After I was discharged from the hospital, my parents took me to our hotel nearby. The ten minute car ride to the hotel was uncomfortable. Every turn, bump, acceleration and stop was a little painful. I wore a nightgown with sneakers and I had a travel catheter strapped to my leg. They dropped me off at the side entrance of the hotel. The walk to the elevator and then to our room felt like the longest walk of my life. The nurse did not strap the catheter properly on my leg. Both catheter straps fell off my leg while I was walking. My mom helped me get to the room. I was exhausted when we finally made it to the room. I had been awake all morning waiting to be discharged and I desperately wanted a nap. My mom switched the travel catheter with one that did not strap to me. Since the catheter had to stay lower than my bladder, we hooked it to a suitcase with wheels. Whenever I got up, my mom rolled the suitcase behind me. My bladder was leashed to the suitcase! It made it difficult to move around, so I didn't walk near as much as I should have walked.
I was almost fully dependent on my mom and dad while we were in the hotel (Thursday-Tuesday). My dad left to go back home on Saturday (12.09.17). I wasn't strong enough to get up without assistance. The suitcase holding the catheter was too heavy for me to pull. I didn't have enough hands to empty my ostomy pouch into a measuring cup to track my output before dumping it down the toilet. We had to measure it for my follow-up appointments. I couldn't bend over to empty my catheter nor could I bend over to put on socks and shoes. I could empty the JP on my own, but I couldn't hold it and shower at the same time. My parents didn't make me leave the hotel, which I appreciated. They went out and brought me back food for each meal. They stepped up to take care of me and I'm thankful for that...even if I am a little worried how my mom will try to hold her good deeds over my head in the future. Throughout my hospital stay and hotel stay, I consistently thanked my mom and dad for everything they were doing for me. No matter how frustrated I got with the nurses, hospital, fevers, my delayed discharge, and comments my mom made, I didn't snap at my mom (or anyone except for the nurse that day in the hospital they wouldn't let me eat or drink when I demanded the nurse to bring me some fucking water). I didn't complain to my mom about any of it. Instead, I slept off my frustrations and I know that even annoyed her at times. I did the best I could and I think she did as well!
The hospital beds were adjustable and I didn't lay flat while in the hospital. The flat hotel beds were hard to get comfortable in. I could only lay on my back because it hurt to lay on my sides. I slept my life away as much as I could with my loud roommates (my parents), the construction in the next room, and the maids. The days kind of all blur together. While I was glad to be out of the hospital, it didn't seem like I made much progress while I was in the hotel. Pretty much all I did was sleep, eat, go to the bathroom, and talk on the phone. Almost every time big sister Lynn called, the maids were vacuuming (lol). I managed to avoid visitors at the hotel. I just didn't have the energy for it. I slept a lot, but I never felt rested.
Around 5am on Sunday morning (12.10.17) the urge to urinate woke me up. I woke my mom up and she helped me out of bed. She wheeled my catheter behind me on the suitcase to the bathroom. I sat on the toilet and peed into the toilet!!! Apparently, I peed around the balloon inside my bladder that was keeping the catheter in place. I freaked out! I messaged my nurse friends to get their input and I called the Cleveland Clinic. At the advice of Cleveland Clinic, I found myself in the ER. My mom was on top of her care giving game because she helped me get ready and get to the ER in a hurry. I was in the ER for two hours. All they did was flush the catheter line. Basically, they injected saline or something into my catheter tube to fill my bladder, which felt absolutely terrible. It really made feel like I had to pee. Somehow the catheter bag started collecting urine again and the feeling to urinate faded, so I guess it worked. The ER nurse gave me additional syringes to flush the line on my own, if needed, and discharged me. Not even 30 minutes after we got back to the hotel, I had the urge to pee again. I peed in the toilet again. I was determined not to go back to the ER. Flushing the line didn't seem to work, so I wasn't going to use the syringes the ER nurse gave me. I peed around the balloon inside my bladder that kept the catheter in place throughout the day on Sunday. It wasn't pleasant. I told myself that I only had to make it one more day with the catheter, so I suffered through it.
On Monday (12.11.17), I had a follow-up appointment for a CT Cystogram. I was excited when the results came back okay because that meant they could remove the catheter. I knew having the catheter was difficult to tolerate; however, it wasn't until it was removed that realized just how awful it was. The nurse told me that I had 6 hours to pee. Little did she know that I was peeing in the toilet throughout the day the day before. I peed soon after getting back to the hotel. It was a lot easier to move around without the damn catheter. I was no longer leashed to the suitcase! On Monday night, I changed my ostomy for the first time by myself. It actually went well!
Tuesday (12.12.17) was my last round of follow-up appointments before I could finally go home. I had the JP drain removed. Perhaps the most pain I experienced during this whole adventure was when the nurse cut one of the stitches holding the JP to my skin. It felt like she sliced my skin. I saw stars! The nurse pulled...and pulled...and pulled the tubing out of my body. The tubing inside me was over a foot long! As the nurse put a bandage over the opening she explained that it's normal to be able to see down into the hole in my body where the drain was until it starts to heal. I was instructed not to put anything into the hole (lol). After the I left the JP nurse, I went to see my ostomy nurses. They examined the pouch I changed myself and said I did a great job. Before I knew, one of the nurses had removed my ostomy (she made it look so much easier than when I did it the night before) and the nurse confirmed that my stoma and surrounding skin looked healthy. The ostomy nurses talked, but I zoned out. I don't know what they said. At this point I was ready to go home. They put a new ostomy pouch on me, asked if I had any questions, and then sent me on my way. After two weeks away, I was finally going home!
My mom drove me home. The three and half hour car ride home didn't pass fast enough. I went straight to my bedroom to put down some stuff and take off my shoes. I had a hat on and must have been looking down because I didn't notice the welcome home decorations, cards, and gifts until I went back into my room after going to the bathroom. A huge shout out to everyone that's supported me through this, thank you! Your phone calls, text messages, sweet cards, well wishes and prayers, gifts, flowers, and donations were more than I could have ever asked for. You guys are all amazing!!! You definitely helped make it easier for me to get through this.
Here's the link to the GoFundMe page my best friend set up: https://www.gofundme.com/laurenfightsback My surgery and hospital stay has been billed at over $100,000! I'm still waiting for that amount to be adjusted for my insurance plan discounts and amounts paid by my plan, but the thought of receiving these bills in the mail is intimidating. Any help would mean the world to me!
I hope my family and friends can count on me, too: https://youtu.be/Yc6T9iY9SOU
Sunday, December 31, 2017
Friday, December 22, 2017
My Eight Day Hospital Stay
If you think this post is long, try staying in the hospital for eight days. After surgery, I was on a clear liquid diet for two days, a GI soft diet for three days, one day of NPO (nothing by mouth), and then regular hospital food thereafter. My appetite was non-existent. The fact that the food and liquids tasted like shit didn't help.
I had a morphine pump for three days after surgery. There was a button I could press whenever I was in pain to activate the morphine through my IV. I could only press it every ten minutes, which wasn't an issue. I only pressed it once and I don't remember when that was. The nurses constantly told me not to be afraid to press the morphine button. I have experienced far more agony than what I felt in the hospital, so it was difficult for me to determine if I needed pain meds or not. I've pushed through much higher pain levels without medication on my own because Crohn's is fucking torture sometimes. In the hospital, I occasionally moaned in pain, but the pain never brought me to tears and the pain didn't feel debilitating. After they unhooked the morphine pump, they offered me Oxycodone for pain. Again, the nurses told me not to be afraid of it. A couple of friends told me not to be a Martyr. Was I really choosing to suffer in pain rather than admit I was in pain and take the meds? I definitely experienced pain in the hospital, but I didn't think it was that bad because I've felt worse before and managed it without any pain meds. I think I accepted Oxy three different times.
I took my first couple of walks on Thursday, the day after surgery. To make matters more complicated, my period started on Thursday. I needed help to sit up. My abs had no strength. It was a process to unhook my compression calf sleeves that plug in and inflate and organize all of the IVs, cords, and tubes so I could walk. Taylor walked with me. Standing up felt weird. I don't know how else to describe it. My belly felt different and sore. Actually, my whole body was sore and stiff. They took out my catheter and my mom helped me out of bed whenever I had to pee. One time, I hollered out of the bathroom to the nurse, "Something is coming out of my butt!" To my surprise, the mucus coming out of my old asshole was normal and expected. I later found out that my new asshole, the loop ileostomy, has two holes. One hole for waste that collects in the ostomy pouch and another hole, which is considered a fistula, to secrete mucus through my lower intestines and out of my old asshole. Yes, I now have two assholes and stuff comes out of both of them. I can't make this shit up. It's a nightmare I didn't know existed. On the positive side, a loop ileostomy is always temporary.
Friday, the doctors realized there was a miscommunication. My catheter should not have been removed, so it needed to be re-inserted. Sure, the nursing student shadowing the nurse can do it. She didn't seem very confident, but she figured it out after asking the nurse to help her. The catheter made one more thing to carry with me on my walks. We tied a glove to the bottom of the IV stand so I could wheel it with me on my walks. Why don't they have a wheeled stand suitable to hold a catheter? I had three visitors on Friday, Badass Doreen, Sas, and Bonnie. They all happened to show up within minutes of each other around 11am. I felt loved and their well wishes lifted my spirits. Sas and Bonnie stayed about an hour. Badass Doreen was awesome and went to lunch with my mom so that I could take a nap. I woke up in the early afternoon moaning in pain. For my entire stay at the hospital, the nurse techs came by every few hours to take my vitals and empty my JP, catheter, and ileostomy. When the nurse tech took my temperature Friday evening, I had a 103 degree fever! I think they gave me Tylenol. My head hurt worse than my stomach at that point. Thankfully, Doreen was there for me and my mom. I think it took a while for my fever to break, but I don't remember when it did. I do know that Doreen left around 9pm and my mom stayed the night with me.
I don't remember much from Saturday and Sunday (I probably slept 85% of the time at the hospital), except that I had a 102.7 degree fever around 8:30pm on Sunday I think they gave me Tylenol again for the fever. I'm not sure when the fever broke. On Monday, I wasn't allowed to eat or drink anything. The nurses even stopped my IVs and stopped giving me the routine meds I was getting because I couldn't have water to swallow them down. The reason they gave me for being NPO was so that they could run tests to figure out what was causing the fevers. I found out later that it was likely in case they needed to take me back into surgery based on the results of the tests. Monday was the hardest day in the hospital. There I was trying to recover from surgery. I was already dehydrated and weak and they wouldn't let me eat or drink anything. I pressed my call button multiple times begging for some water or ice. "Bring me some fucking water!" My mouth felt as dry as a desert. My lips are still cracked at the corners from that day. It took them all day to take me to have two tests done and get blood cultures. The blood cultures came back okay. The first test, a cystogram, was done around 5pm. It was pretty easy since I already had a catheter in. Afterwards, the nurses and my mom wanted me to walk. Ha! I was so thirsty that I refused to walk if they couldn't give me water. Asking me to walk was bullshit. After the cystogram they hooked me up to an IV for antibiotics, but I still wasn't allowed to eat or drink. They took me to get a CT scan with an enema contrast right before midnight. By this point I was pissed, annoyed, thirsty, and hangry. Moving on and off the CT table with only one person helping me was a struggle and it hurt my stomach. When the tech was inserting the enema tip for the barium contrast, I realized that my stricture closest to my rectum was still there. No wonder the ostomy is temporary! I advised the tech of my stricture and the pain the large tip (lol) was causing in my anus. (Don't worry, I've already accepted that anal will never be for me.) I was happy once the CT was over, but disappointed that I had to wait for the results before they would clear me to eat and drink. When I got back to my hospital room after midnight, I slept until morning. I was completely drained. The blood cultures, cystogram, and CT results all came back okay. We never found out what caused the fevers. I think it was just my body trying to heal and recover. It was on overload. Although looking back, I would be curious to know if the fevers were a result of taking the pain meds. Even though I lost it a couple of times on Monday, I tried to hold it together and I was a lot nicer than I wanted to be.
By Tuesday, it started to feel like I would never get out of the hospital. It didn't matter that my appetite increased a little because every time a meal came, the nurse tech decided to come in and empty my JP, catheter, and ileostomy and then suddenly I wasn't hungry anymore. Eventually, I got the bright idea to start asking the nurse tech to wait until I finished eating. Taylor visited me, brought dry shampoo, and did my hair. I love her! I didn't shower the entire time I was in the hospital. They helped me wipe myself down, but that's just not the same as a shower. I walked six times on Tuesday! Yet again, I had another fever Tuesday night. This time it was only 101 degrees and it came down quickly after I took Tylenol. When my doctor and his team made their rounds early Wednesday morning, they let me know that if I can go 24 hours without a fever they will discharge me on Thursday. I walked six times on Wednesday, too.
Around 4:30am Thursday morning, the nurse tech took my temperature with a reading of 100 degrees. Knowing I wouldn't be discharged if I had a fever, I asked the tech to take my temperature again since I didn't feel like I had a fever. The tech immediately took my temperature again with a reading of 98.4 degrees. I don't understand how the thermometer can give those two different readings in a matter of seconds. We went with the second reading. Around 6am, my doctor and his team let me know that I would be discharged! It's a slow process to get discharged. The pharmacy had to fill my prescription, the ostomy nurse had to change my pouch and give me supplies so that I could change it on my own, and my nurse had to get all of the discharge instructions in order. When it was finally time to ditch the hospital around 1pm, my mom helped me change out of my butt flap gown and she put my socks and shoes on me. I was overwhelmed with emotion as I moved from the hospital bed to the wheelchair. I cried a little as the nurse wheeled me down to the car my dad pulled around. Other than that, I didn't cry in the hospital. I left the hospital with the JP and catheter and I had follow-up appointments the following week to have them removed.
I survived my first hospital stay due to Crohn's disease. I've had some terrible Crohn's days in the past fifteen years and it makes me wonder how I managed to avoid the hospital until surgery. The surgery, hospital stay, and staying in a hotel afterwards were the most difficult two weeks of my life. The results of the surgery were better than I expected going into it. Although I shouldn't be surprised it went so well because I had the best surgeon! The support from my family and friends meant the world to me! They are absolutely amazing! They made sure I knew I wasn't going through this alone.
When I need motivation, I blast this song: https://youtu.be/8hkmuTvkp_s
I had a morphine pump for three days after surgery. There was a button I could press whenever I was in pain to activate the morphine through my IV. I could only press it every ten minutes, which wasn't an issue. I only pressed it once and I don't remember when that was. The nurses constantly told me not to be afraid to press the morphine button. I have experienced far more agony than what I felt in the hospital, so it was difficult for me to determine if I needed pain meds or not. I've pushed through much higher pain levels without medication on my own because Crohn's is fucking torture sometimes. In the hospital, I occasionally moaned in pain, but the pain never brought me to tears and the pain didn't feel debilitating. After they unhooked the morphine pump, they offered me Oxycodone for pain. Again, the nurses told me not to be afraid of it. A couple of friends told me not to be a Martyr. Was I really choosing to suffer in pain rather than admit I was in pain and take the meds? I definitely experienced pain in the hospital, but I didn't think it was that bad because I've felt worse before and managed it without any pain meds. I think I accepted Oxy three different times.
I took my first couple of walks on Thursday, the day after surgery. To make matters more complicated, my period started on Thursday. I needed help to sit up. My abs had no strength. It was a process to unhook my compression calf sleeves that plug in and inflate and organize all of the IVs, cords, and tubes so I could walk. Taylor walked with me. Standing up felt weird. I don't know how else to describe it. My belly felt different and sore. Actually, my whole body was sore and stiff. They took out my catheter and my mom helped me out of bed whenever I had to pee. One time, I hollered out of the bathroom to the nurse, "Something is coming out of my butt!" To my surprise, the mucus coming out of my old asshole was normal and expected. I later found out that my new asshole, the loop ileostomy, has two holes. One hole for waste that collects in the ostomy pouch and another hole, which is considered a fistula, to secrete mucus through my lower intestines and out of my old asshole. Yes, I now have two assholes and stuff comes out of both of them. I can't make this shit up. It's a nightmare I didn't know existed. On the positive side, a loop ileostomy is always temporary.
Friday, the doctors realized there was a miscommunication. My catheter should not have been removed, so it needed to be re-inserted. Sure, the nursing student shadowing the nurse can do it. She didn't seem very confident, but she figured it out after asking the nurse to help her. The catheter made one more thing to carry with me on my walks. We tied a glove to the bottom of the IV stand so I could wheel it with me on my walks. Why don't they have a wheeled stand suitable to hold a catheter? I had three visitors on Friday, Badass Doreen, Sas, and Bonnie. They all happened to show up within minutes of each other around 11am. I felt loved and their well wishes lifted my spirits. Sas and Bonnie stayed about an hour. Badass Doreen was awesome and went to lunch with my mom so that I could take a nap. I woke up in the early afternoon moaning in pain. For my entire stay at the hospital, the nurse techs came by every few hours to take my vitals and empty my JP, catheter, and ileostomy. When the nurse tech took my temperature Friday evening, I had a 103 degree fever! I think they gave me Tylenol. My head hurt worse than my stomach at that point. Thankfully, Doreen was there for me and my mom. I think it took a while for my fever to break, but I don't remember when it did. I do know that Doreen left around 9pm and my mom stayed the night with me.
I don't remember much from Saturday and Sunday (I probably slept 85% of the time at the hospital), except that I had a 102.7 degree fever around 8:30pm on Sunday I think they gave me Tylenol again for the fever. I'm not sure when the fever broke. On Monday, I wasn't allowed to eat or drink anything. The nurses even stopped my IVs and stopped giving me the routine meds I was getting because I couldn't have water to swallow them down. The reason they gave me for being NPO was so that they could run tests to figure out what was causing the fevers. I found out later that it was likely in case they needed to take me back into surgery based on the results of the tests. Monday was the hardest day in the hospital. There I was trying to recover from surgery. I was already dehydrated and weak and they wouldn't let me eat or drink anything. I pressed my call button multiple times begging for some water or ice. "Bring me some fucking water!" My mouth felt as dry as a desert. My lips are still cracked at the corners from that day. It took them all day to take me to have two tests done and get blood cultures. The blood cultures came back okay. The first test, a cystogram, was done around 5pm. It was pretty easy since I already had a catheter in. Afterwards, the nurses and my mom wanted me to walk. Ha! I was so thirsty that I refused to walk if they couldn't give me water. Asking me to walk was bullshit. After the cystogram they hooked me up to an IV for antibiotics, but I still wasn't allowed to eat or drink. They took me to get a CT scan with an enema contrast right before midnight. By this point I was pissed, annoyed, thirsty, and hangry. Moving on and off the CT table with only one person helping me was a struggle and it hurt my stomach. When the tech was inserting the enema tip for the barium contrast, I realized that my stricture closest to my rectum was still there. No wonder the ostomy is temporary! I advised the tech of my stricture and the pain the large tip (lol) was causing in my anus. (Don't worry, I've already accepted that anal will never be for me.) I was happy once the CT was over, but disappointed that I had to wait for the results before they would clear me to eat and drink. When I got back to my hospital room after midnight, I slept until morning. I was completely drained. The blood cultures, cystogram, and CT results all came back okay. We never found out what caused the fevers. I think it was just my body trying to heal and recover. It was on overload. Although looking back, I would be curious to know if the fevers were a result of taking the pain meds. Even though I lost it a couple of times on Monday, I tried to hold it together and I was a lot nicer than I wanted to be.
By Tuesday, it started to feel like I would never get out of the hospital. It didn't matter that my appetite increased a little because every time a meal came, the nurse tech decided to come in and empty my JP, catheter, and ileostomy and then suddenly I wasn't hungry anymore. Eventually, I got the bright idea to start asking the nurse tech to wait until I finished eating. Taylor visited me, brought dry shampoo, and did my hair. I love her! I didn't shower the entire time I was in the hospital. They helped me wipe myself down, but that's just not the same as a shower. I walked six times on Tuesday! Yet again, I had another fever Tuesday night. This time it was only 101 degrees and it came down quickly after I took Tylenol. When my doctor and his team made their rounds early Wednesday morning, they let me know that if I can go 24 hours without a fever they will discharge me on Thursday. I walked six times on Wednesday, too.
Around 4:30am Thursday morning, the nurse tech took my temperature with a reading of 100 degrees. Knowing I wouldn't be discharged if I had a fever, I asked the tech to take my temperature again since I didn't feel like I had a fever. The tech immediately took my temperature again with a reading of 98.4 degrees. I don't understand how the thermometer can give those two different readings in a matter of seconds. We went with the second reading. Around 6am, my doctor and his team let me know that I would be discharged! It's a slow process to get discharged. The pharmacy had to fill my prescription, the ostomy nurse had to change my pouch and give me supplies so that I could change it on my own, and my nurse had to get all of the discharge instructions in order. When it was finally time to ditch the hospital around 1pm, my mom helped me change out of my butt flap gown and she put my socks and shoes on me. I was overwhelmed with emotion as I moved from the hospital bed to the wheelchair. I cried a little as the nurse wheeled me down to the car my dad pulled around. Other than that, I didn't cry in the hospital. I left the hospital with the JP and catheter and I had follow-up appointments the following week to have them removed.
I survived my first hospital stay due to Crohn's disease. I've had some terrible Crohn's days in the past fifteen years and it makes me wonder how I managed to avoid the hospital until surgery. The surgery, hospital stay, and staying in a hotel afterwards were the most difficult two weeks of my life. The results of the surgery were better than I expected going into it. Although I shouldn't be surprised it went so well because I had the best surgeon! The support from my family and friends meant the world to me! They are absolutely amazing! They made sure I knew I wasn't going through this alone.
When I need motivation, I blast this song: https://youtu.be/8hkmuTvkp_s
Saturday, December 16, 2017
Surgery Day 11.29.17
I woke up surgery morning feeling overwhelmed and relieved. I was overwhelmed about not knowing exactly what was going to happen during surgery and I was relieved that it was finally surgery day. By the time I showered with special pre-op soap and got dressed, everyone else was just about ready to go. I gave instructions to my mom about the bags of gifts in the hotel room. My running friends gave me gifts and numbered them for me to open one everyday while I was in the hospital. I gave Taylor a bag to hold with shit that I might want or need in my hospital room.
Upon checking in at the Cleveland Clinic, Taylor and my parents received visitor stickers. Cleveland Clinic also gave them a pager that my surgery team would send updates to. The waiting room slowly started to fill up with other patients. A short time later, the one check-in lady called my name along with five other names. I didn't hug anyone and I don't know if I said anything. I stood up and followed the leader to my pre-op staging area leaving Taylor and my parents behind in the waiting room.
Nurse Debbie made me pee in a cup to prove I wasn't pregnant. When Debbie asked how much I weighed, I said, "160-ish". She didn't think that was exact enough, so she asked me to step on the scale. I weighed in at 159.4. I told her, "the negative .6 was the ish". I took off all of my clothes, changed into a hospital gown, and got into the hospital bed. The needle of the IV Debbie hooked me to was so big that she had to give me a numbing shot before inserting the needle for the IV. My doctor and his team of fellows and residents stopped by and confirmed that we don't know what's going to happen in surgery until he gets in there. He also inquired about my ability to control my bowels, which I haven't had any issues with since I started Remicade in May of 2016. I signed my life away, Debbie finished getting me ready, and then she paged my support team to come back to see me.
It felt awkward to have Taylor and my parents there as they prepared me to be rolled away to the operating room. I'm sure we had small talk, but I don't remember what anyone said. Taylor snapped the photo below.
It's crazy what you can mask by giving two thumbs up and putting a smile on your face. I don't look terrified. I don't look like I'm mourning my quality of life leading up to surgery. I don't look unsure. I don't look hopeless. I don't look like I'm breaking down. In all fairness, I tried not to let myself lose it openly and it seemed to work (no wonder I have a disease to my gut, huh?). Taylor and my parents hugged me and left. Seconds later I was being wheeled to the operating room.
I lost count how many different people asked for my name, date of birth, and to describe what surgery I was there for. The last one seemed like a trick question because there were so many different possibilities of what could happen during surgery, so I told them the best outcome and mumbled the scary possibilities. The operating room was filled with at least ten people. Machines and equipment I've never seen before surrounded me. The room was cold and white. I had to roll onto the operating table from the hospital bed I was in. I remember someone saying they were about to start the IV. A tear may have found my cheek. I don't remember counting down or anything after that while in the operating room.
Surgery took about five hours. It started around 8:30am and finished around 1:30pm. I was in recovery for about two hours before visitors could visit me one at a time for five minutes each. I remember the nurse kept asking me if I was in pain. In my groggy state, I kept saying no. The nurse seemed concerned that I didn't seem to be in pain, so I asked her if they gave me something in surgery for the pain. After looking it up, she confirmed that I did not receive any pain blockers during surgery. I was in and out of it for a while, not conscious enough to be concerned with asking how surgery went or looking at my belly under the blankets and hospital gown. I heard my mom's voice, which woke me up. When she asked if they told me the news, I said no. That's how I found out I had a temporary ileostomy and it will likely be reversed in three months. I think I went back to sleep after she told me. I remember Taylor visiting me, too! She was excited I was in curtained room number 13. I don't remember my dad visiting me, but I'm sure he did. It's all a blur.
I stayed in the curtained recovery room for about 4-5 hours until they finally had a hospital room open up for me. Thankfully, I had a hospital room all to myself and didn't have to share it with another patient. I don't remember much else from that day. I'm still not entirely sure what they did during surgery. This is how my discharge papers describe the operation:
This song sums up my message to Crohn's disease! https://youtu.be/8fEoWA9Vz3A
Upon checking in at the Cleveland Clinic, Taylor and my parents received visitor stickers. Cleveland Clinic also gave them a pager that my surgery team would send updates to. The waiting room slowly started to fill up with other patients. A short time later, the one check-in lady called my name along with five other names. I didn't hug anyone and I don't know if I said anything. I stood up and followed the leader to my pre-op staging area leaving Taylor and my parents behind in the waiting room.
Nurse Debbie made me pee in a cup to prove I wasn't pregnant. When Debbie asked how much I weighed, I said, "160-ish". She didn't think that was exact enough, so she asked me to step on the scale. I weighed in at 159.4. I told her, "the negative .6 was the ish". I took off all of my clothes, changed into a hospital gown, and got into the hospital bed. The needle of the IV Debbie hooked me to was so big that she had to give me a numbing shot before inserting the needle for the IV. My doctor and his team of fellows and residents stopped by and confirmed that we don't know what's going to happen in surgery until he gets in there. He also inquired about my ability to control my bowels, which I haven't had any issues with since I started Remicade in May of 2016. I signed my life away, Debbie finished getting me ready, and then she paged my support team to come back to see me.
It felt awkward to have Taylor and my parents there as they prepared me to be rolled away to the operating room. I'm sure we had small talk, but I don't remember what anyone said. Taylor snapped the photo below.
It's crazy what you can mask by giving two thumbs up and putting a smile on your face. I don't look terrified. I don't look like I'm mourning my quality of life leading up to surgery. I don't look unsure. I don't look hopeless. I don't look like I'm breaking down. In all fairness, I tried not to let myself lose it openly and it seemed to work (no wonder I have a disease to my gut, huh?). Taylor and my parents hugged me and left. Seconds later I was being wheeled to the operating room.
I lost count how many different people asked for my name, date of birth, and to describe what surgery I was there for. The last one seemed like a trick question because there were so many different possibilities of what could happen during surgery, so I told them the best outcome and mumbled the scary possibilities. The operating room was filled with at least ten people. Machines and equipment I've never seen before surrounded me. The room was cold and white. I had to roll onto the operating table from the hospital bed I was in. I remember someone saying they were about to start the IV. A tear may have found my cheek. I don't remember counting down or anything after that while in the operating room.
Surgery took about five hours. It started around 8:30am and finished around 1:30pm. I was in recovery for about two hours before visitors could visit me one at a time for five minutes each. I remember the nurse kept asking me if I was in pain. In my groggy state, I kept saying no. The nurse seemed concerned that I didn't seem to be in pain, so I asked her if they gave me something in surgery for the pain. After looking it up, she confirmed that I did not receive any pain blockers during surgery. I was in and out of it for a while, not conscious enough to be concerned with asking how surgery went or looking at my belly under the blankets and hospital gown. I heard my mom's voice, which woke me up. When she asked if they told me the news, I said no. That's how I found out I had a temporary ileostomy and it will likely be reversed in three months. I think I went back to sleep after she told me. I remember Taylor visiting me, too! She was excited I was in curtained room number 13. I don't remember my dad visiting me, but I'm sure he did. It's all a blur.
I stayed in the curtained recovery room for about 4-5 hours until they finally had a hospital room open up for me. Thankfully, I had a hospital room all to myself and didn't have to share it with another patient. I don't remember much else from that day. I'm still not entirely sure what they did during surgery. This is how my discharge papers describe the operation:
- Laparoscopic sigmoid colectomy with laparoscopic mobilization of splenic flexure, takedown of colovesical fistula, colorectal anastomosis, laparoscopic mobilization of splenic flexure, intraoperative flexible sigmoidoscopy, intraoperative rigid proctoscopy, and laparoscopic ileocolic resection with anastomosis with loop ileostomy.
This song sums up my message to Crohn's disease! https://youtu.be/8fEoWA9Vz3A
Friday, December 15, 2017
The Day Before Surgery
I have plenty of time on my hands, so I am going to start from the beginning
My parents and I made our way down to the Cleveland Clinic for my stoma marking appointment at 1pm on Tuesday, November 28, 2017. Little did I know that I would not be alone again for two weeks. One of my Team Challenge friends gave me an ostomy bag to wear on the trip down so that I could have a better idea of where to guide the nurse to make the marks. Before my appointment, we stopped at Chick-fil-a. Even though I was on a clear liquid diet, my parents wanted me to come inside and sit with them as they ate lunch. Since we were just getting started, I didn't want to rock the boat. I sat there and watched them eat while I sipped on some water. Whatever, as long as they are comforted during this difficult time.
I took off the ostomy pouch I was wearing after they ate lunch. Although it felt weird, it was a good reality check for me to literally visualize it on me. Once we arrived at the Cleveland Clinic, my parents took a seat in the waiting room while I checked-in. After checking-in, my mom inquired if I wanted them to come back with me. I shook my head because I wanted to tackle the appointment by myself. Soon, I found myself in a patient room with two ostomy nurses. One nurse typed in notes on the computer as the other nurse placed both thumbs on my hips and both index fingers at a diagonal on both sides of my belly button. These were the spots we marked for the stoma. My left side would be for a possible colostomy (from large intestine) and my right side would be for a possible ileostomy (from small intestine).
My parents and I made our way down to the Cleveland Clinic for my stoma marking appointment at 1pm on Tuesday, November 28, 2017. Little did I know that I would not be alone again for two weeks. One of my Team Challenge friends gave me an ostomy bag to wear on the trip down so that I could have a better idea of where to guide the nurse to make the marks. Before my appointment, we stopped at Chick-fil-a. Even though I was on a clear liquid diet, my parents wanted me to come inside and sit with them as they ate lunch. Since we were just getting started, I didn't want to rock the boat. I sat there and watched them eat while I sipped on some water. Whatever, as long as they are comforted during this difficult time.
I took off the ostomy pouch I was wearing after they ate lunch. Although it felt weird, it was a good reality check for me to literally visualize it on me. Once we arrived at the Cleveland Clinic, my parents took a seat in the waiting room while I checked-in. After checking-in, my mom inquired if I wanted them to come back with me. I shook my head because I wanted to tackle the appointment by myself. Soon, I found myself in a patient room with two ostomy nurses. One nurse typed in notes on the computer as the other nurse placed both thumbs on my hips and both index fingers at a diagonal on both sides of my belly button. These were the spots we marked for the stoma. My left side would be for a possible colostomy (from large intestine) and my right side would be for a possible ileostomy (from small intestine).
 |
| My belly does not look like this anymore. |
I thought I would get to give more input about the location of the marks, but according to the nurse my belly was a textbook mark since it was flat with no creases. If the marks had interfered with my pant line, we would have had a discussion. Honestly, the one mark was almost exactly where I had placed the practice one on my trip down, so I felt okay about it. The one nurse had me stand in front of the mirror and lift my shirt. She then proceeded to hold an ostomy pouch at one mark and then switched to hold it at the other mark. She didn't know I had already visualized it and she seemed shocked about my calm acceptance of it. The nurses let me know that if I end up with an ostomy, they will be visiting me in the hospital after surgery. Okay, I hope I never see you again.
We checked-in at the hotel and I started my laxative preps. I also tried to take a nap. My mind was racing and the maid was vacuuming what must have been the biggest fucking room next to ours because the vacuum just kept going and going. I couldn't sleep. Taylor arrived at dinner time and my parents went out to eat while she stayed with me. I was in the middle of my second round of laxatives, but we found time to open the gifts she brought me and have a pillow fight! To my surprise, the laxatives actually worked! It was a lot easier than both of the preps I did for my colonoscopy. I was up going to the bathroom multiple times throughout the night. I wanted to lie in bed and cry, but I couldn't cry with my parents and Taylor in the room. I couldn't even bring myself to cry in the bathroom by myself because I knew they were all in the other room. I held it together and that was that.
This chorus:
https://youtu.be/HzTot2OZI0s
This chorus:
https://youtu.be/HzTot2OZI0s
Wednesday, November 22, 2017
Details for the Big Day
By this time next week, the surgery will be complete and I will be in recovery. I am scared of the unknown. We don't know what the results are going to be. I won't know the results until I wake up from surgery. My gut is telling me the results are not going to be the results I want. My gut is a bastard though. The anticipation becomes heavier with each passing day.
I had a pre-op phone call with my nurse at the Cleveland Clinic today to work out all of the details for the big day. This is what I know:
Tuesday, November 28, 2017
I had a pre-op phone call with my nurse at the Cleveland Clinic today to work out all of the details for the big day. This is what I know:
Tuesday, November 28, 2017
- CLEAR LIQUID DIET ALL DAY
- 1pm: Stoma marking appointment at the Cleveland Clinic.
- While I'm at the Cleveland Clinic for the stoma marking I also have to get blood typing done.
- 2pm: Take the first of two rounds of antibiotics
- 3pm: Take 3 Dulcoax tablets.
- 5pm: Mix 238 grams of Miralax with 64oz. of Gatorade. Drink 8oz. every 15 minutes.
- 10pm: Take last round of antibiotics.
- NOTHING TO EAT OR DRINK AFTER MIDNIGHT
Wednesday, November 29, 2017
- NOTHING TO EAT OR DRINK
- Shower using regular soap.
- Shower using Hibiclens (an antiseptic skin cleanser) from head to toe spending at least five minutes on my torso area before rinsing off.
- 5:30am: Check-in at Cleveland Clinic hospital, unless they call me and reschedule the time.
Surgery is estimated to take about 5 hours. It's going to be a laparoscopic sigmoid colectomy and they will insert a catheter and place ureteral stents during surgery and the stents will be removed before surgery is complete. Possibly sub-total colectomy. Possibly open surgery. Possibly temporary or permanent ileostomy or possibly temporary or permanent colostomy.
- Once surgery is complete they will talk with my posse in the waiting room.
- Expected to be in an intensive recovery room for about an hour and a half after surgery before they move me to the room I'll be staying in for the remainder of stay.
- Estimated to be in the hospital for 5-7 days and the Dr. might advise me to stay in town for a period of time after I'm released before I can travel home.
- The catheter will be removed a few days after surgery.
- I'll have a pain pump to squeeze and control my pain medicine after surgery.
- I'll have to do deep inhalation breathing exercises after surgery.
Monday, November 13, 2017
My Unscarred Belly's Reflection
I find myself lifting up my shirt more frequently when I'm standing in front of the bathroom mirror to look at my unscarred belly's reflection. When I get dressed and undressed, I glance down and stare at my bare stomach. How can it appear deceivingly healthy on the outside when it is a disastrous mess on the inside? Suddenly, I have this weird fascination with constantly stealing glimpses of my gut.
When I'm in bed, I place my hands on my abdomen to feel my belly. It's smooth and it doesn't hurt to touch. I don't feel foreign material, scar tissue, or tenderness. Sometime last week, I started looking at my belly whenever I wake up... envisioning and preparing for the worst case scenario when I first wake up from surgery. My eyes flutter open and then close. As I take a breath I slide the blanket off and lift my shirt to reveal my stomach. I tilt my head down and as I let the breath out I open my eyes. I cry every time I open my eyes. I imagine a lengthy incision held together with ugly staples. I picture a shit bag attached to a new asshole. I hear the sobs of my mom and Taylor only to realize the sound is coming from me, not them.
Despite the fun and distractions I have thanks to my friends, it's getting more difficult to stop thinking about the surgery, the outcome, and the recovery that awaits me. I look at the photo above and I think that's not me, that's not the me I'm going to be in a couple of weeks at least. And so it goes, another day passes, another tear falls.
 |
| I took this when I woke up from my nap yesterday. |
It likely won't look like this for much longer.
Despite the fun and distractions I have thanks to my friends, it's getting more difficult to stop thinking about the surgery, the outcome, and the recovery that awaits me. I look at the photo above and I think that's not me, that's not the me I'm going to be in a couple of weeks at least. And so it goes, another day passes, another tear falls.
Sunday, November 12, 2017
My Ass Cannot Catch a Break
Last week, I had a chest x-ray scheduled on Tuesday. When the nurse checked my vitals, she informed me that my doc was going to be sending me to an imaging center to get my chest x-rayed so that a radiologist could view the images and conclude the findings. We decided to do the other pre-op clearance stuff instead. I had eaten prior to my appointment that morning, so we couldn't do the required pre-op lab work. At least we were able to do the EKG. For the EKG, my pants stayed on! It was a nice change from most appointments. My doc couldn't retrieve the EKG results while I was there because their system was down. According to my doc, my blood pressure is equivalent to blood pressure of fourteen year olds (amazing!). He also raved about how happy he is to see me weigh in at 160lbs! 160lbs feels awesome to me, too! Of the many things I'm worried about post-surgery, weight loss is one of them. Right now, I feel strong physically as well as mentally. In the past, losing weight had a way of fucking up that strength for me.
On Wednesday, I met my friend, Brittany, for breakfast in Clermont prior to my cystoscopy appointment with my urologist. I stand corrected, Clermont is neither podunk, nor bumfuck (lol that correction is for you, Britt). It was great to catch up with her at breakfast and be distracted from my forthcoming doctor appointment. We arrived at my appointment at 9:30am so that I could get a shot of antibiotics an hour before the procedure at 10:30am. Britt waited in the waiting room while I went in the back. As my nurse mixed the antibiotics in a syringe with some kind of numbing agent, I let her know that my friend would be coming back with me for the procedure. My nurse seemed concerned and wanted me to make sure my friend knew that I would be exposed (umm, how else are you going to stick a scope up my urethra?) Once she was done shaking the syringe, I rolled up my shirt sleeve. To my surprise, she said, "I have to give this to you in your buttock". So, I dropped my pants and underwear. Apparently, it's painful and the butt check offers the biggest muscle to inject it into. I smiled and laughed to myself as I walked back out to the waiting room to join Brittany. I let her know what happened. My ass cannot catch a break!
Before I got into position, the nurse said it won't hurt and would only take two minutes. Soon enough, I found myself sitting on the exam table with my feet in the stirrups and nothing but a modesty paper covering me below the waist. The nurse rubbed me with something to numb the subject area. I can only describe what I felt next as a shot in my pee hole! WHAT THE FUCK! I do not know what caused that pain (was it a needle to numb me further or something else like a clamp to hold my urethra in position?). I didn't ask either. Just thinking about it again makes me short of breath. Brittany let me hold her hand and I know her presence helped me endure the craziness of a cystoscopy. The nurse told me not to get off the table while she went to get the doctor (haha). Once the doctor put the scope in me, we were able to see my bladder on the screen. They pumped sterile water into my bladder. There was notable abnormal inflammation and lines he said indicate that I strain to urinate (I don't think I do). We did not find the fistula. The scope was super uncomfortable and he let it drop out when they stopped pumping the water, so then he re-inserted it back in which seemed awkward. Normally, I don't seek company at my appointments, but this is one I am fortunate Brittany was there to help me through it! Thank you, Britt!!!
This week I will finish all of my pre-op testing on Tuesday by getting lab work, a chest x-ray and a cystogram. Hopefully, a cystogram will be nothing compared to a cystoscopy. After that, the only appointments left before surgery are my call with a Cleveland Clinic pre-op nurse on November 22nd and my stoma marking appointment at the Cleveland Clinic on November 28th.
On Wednesday, I met my friend, Brittany, for breakfast in Clermont prior to my cystoscopy appointment with my urologist. I stand corrected, Clermont is neither podunk, nor bumfuck (lol that correction is for you, Britt). It was great to catch up with her at breakfast and be distracted from my forthcoming doctor appointment. We arrived at my appointment at 9:30am so that I could get a shot of antibiotics an hour before the procedure at 10:30am. Britt waited in the waiting room while I went in the back. As my nurse mixed the antibiotics in a syringe with some kind of numbing agent, I let her know that my friend would be coming back with me for the procedure. My nurse seemed concerned and wanted me to make sure my friend knew that I would be exposed (umm, how else are you going to stick a scope up my urethra?) Once she was done shaking the syringe, I rolled up my shirt sleeve. To my surprise, she said, "I have to give this to you in your buttock". So, I dropped my pants and underwear. Apparently, it's painful and the butt check offers the biggest muscle to inject it into. I smiled and laughed to myself as I walked back out to the waiting room to join Brittany. I let her know what happened. My ass cannot catch a break!
Before I got into position, the nurse said it won't hurt and would only take two minutes. Soon enough, I found myself sitting on the exam table with my feet in the stirrups and nothing but a modesty paper covering me below the waist. The nurse rubbed me with something to numb the subject area. I can only describe what I felt next as a shot in my pee hole! WHAT THE FUCK! I do not know what caused that pain (was it a needle to numb me further or something else like a clamp to hold my urethra in position?). I didn't ask either. Just thinking about it again makes me short of breath. Brittany let me hold her hand and I know her presence helped me endure the craziness of a cystoscopy. The nurse told me not to get off the table while she went to get the doctor (haha). Once the doctor put the scope in me, we were able to see my bladder on the screen. They pumped sterile water into my bladder. There was notable abnormal inflammation and lines he said indicate that I strain to urinate (I don't think I do). We did not find the fistula. The scope was super uncomfortable and he let it drop out when they stopped pumping the water, so then he re-inserted it back in which seemed awkward. Normally, I don't seek company at my appointments, but this is one I am fortunate Brittany was there to help me through it! Thank you, Britt!!!
This week I will finish all of my pre-op testing on Tuesday by getting lab work, a chest x-ray and a cystogram. Hopefully, a cystogram will be nothing compared to a cystoscopy. After that, the only appointments left before surgery are my call with a Cleveland Clinic pre-op nurse on November 22nd and my stoma marking appointment at the Cleveland Clinic on November 28th.
Wednesday, November 8, 2017
T-Minus Three Weeks!!
I'm still processing my cystoscopy experience this morning, so I'm going to save that post for next time and post about running and recovery instead. I plan to run four more times before surgery (November 11th, 18th, 21st and 26th). These last few runs will be treasured. I will take note of the strength my body possesses to power forward. My opportunities to run before surgery are numbered and the inevitable break-up is fast approaching. Surgery is three weeks away!
Despite all of my excuses, running charms me and casts a magical spell over my mentality. I think the fact that I keep showing up to run while I'm facing bowel resection explains it well. One of the benefits of the spell is having the fortitude necessary to handle this shit storm better than I thought I would. I will not take these last few runs before surgery for granted. I will let each run remind me that I am more incredible than I give myself credit for.
The thought of recovery being hellish scares me. If I struggle during recovery, I am going to read this paragraph. I am determined to recover successfully! In order to have a successful recovery, I will follow the doctor's orders as reasonably required, fight through the pain, take naps, and accept the results of the surgery as my new "normal" no matter what. I will allow myself a healthy amount of time to mourn my old "normal". I will ask for help when I need it. I will not give up. I will attempt to get other aspects of my life back to the state they were in during the months before surgery. I will not intentionally shut people out. I will be brave enough to be somebody's role model. How's that for commitment for you?
Despite all of my excuses, running charms me and casts a magical spell over my mentality. I think the fact that I keep showing up to run while I'm facing bowel resection explains it well. One of the benefits of the spell is having the fortitude necessary to handle this shit storm better than I thought I would. I will not take these last few runs before surgery for granted. I will let each run remind me that I am more incredible than I give myself credit for.
The thought of recovery being hellish scares me. If I struggle during recovery, I am going to read this paragraph. I am determined to recover successfully! In order to have a successful recovery, I will follow the doctor's orders as reasonably required, fight through the pain, take naps, and accept the results of the surgery as my new "normal" no matter what. I will allow myself a healthy amount of time to mourn my old "normal". I will ask for help when I need it. I will not give up. I will attempt to get other aspects of my life back to the state they were in during the months before surgery. I will not intentionally shut people out. I will be brave enough to be somebody's role model. How's that for commitment for you?
Tuesday, November 7, 2017
2017 Wine and Dine Weekend
I joined three other running divas for a weekend at Disney's Wine and Dine 10k and half marathon (19.3 miles). We met at Epcot around 4AM on Saturday to take a bus to the Magic Kingdom parking lot for the start of the 10K. Badass Doreen made us coordinating costumes for each race. For the 10k, we represented different countries in Epcot (America, Germany, Italy, and Mexico). The 6.2 miles flew by as we chatted, told stories about being drunk, enjoyed the on-course entertainment, and posed for pictures!
After the 10k, we went straight to Animal Kingdom to explore Pandora - The World of Avatar! The Avatar Flight of Passage ride was out of this world! It felt like I was actually riding a Banshee! The effects were super cool. It's like as a futuristic version of Soarin' only you're on a Banshee in Pandora. We rode other rides and took advantage of photo-ops with characters. By 4:45PM we went to get our cars at Epcot before checking into the hotel.
The shower at the hotel was amazing! I started a pillow fight and jumped on all three beds (its my hotel tradition). Two of the divas went on a two hour adventure to pick-up dinner. I took a nap while they were on their adventure. Once they returned, we ate dinner and had a funny conversation about their dinner adventure among other topics that exhausted runners find amusing(basically everything was funny at this point). After dinner, we went to bed.
On Sunday, we caught the bus from our hotel at 4AM to the Magic Kingdom parking lot for the start of the half marathon. Our costume theme was Beauty and the Beast (Beast, Belle, Gaston, and Lumiere). The fellow runners and volunteers loved our ensemble! I video called my sister, Kim, and we sang "Happy Birthday" to her. I also video called Taylor, which was fun even though I woke her up (sorry, Taylor). I got into character as Gaston and boasted about my charm, beauty, and muscles throughout the race. I was arrogant and narcissistic! Whenever anyone cheered, I acted as if they only came to the race to cheer me on. It was a blast! We focused on having fun and stopped for photos along the course. Another running diva was handing out cold towels at the finish line, so we found her and took a selfie together! After her volunteer shift, we all went to lunch.
Most of us took a nap after lunch to rest up for the after party at Epcot Sunday night. We washed our outfits so that we could wear them to the after party. The running divas even made doing laundry fun! Cindy and I explored the hotel. We played ping-pong, went down slides, enjoyed a bedtime story, and learned how to draw Nemo. The after party started at 8PM and ended at 1AM. We entered Epcot around 8:30pm and we left around 1:15PM. We rode rides, ate and drank at the food and wine festival vendors, and took advantage of more photo-ops with characters. In one of the lines, a guy was excited to see Belle (Cindy), until he saw Gaston (me) and then he wanted nothing to do with Belle. He asked me if we could take a picture together and inquired if I could flex for the photo. He handed Belle his phone and before Belle took our picture, he felt my muscle. I told him it was real! lol After taking our picture, Belle proceeded to take a selfie of her and the Beast. It was absolutely hilarious!
By the time we got back to the hotel early Monday morning, it was almost 2AM. Despite not feeling my best, I kept up with the divas all weekend! I experienced stomach pain this weekend. I gave vague answers when I was asked how I was feeling. My plan was not to acknowledge the pain. The pain wasn't constant. However, when it hit me, it took effort not to hunch over, moan from the torment, and wrap my arms around my belly until it went away. Speaking of pain, the bottom of my left foot also hurt. Was it really hurting though, or was it ghost pain? Whether real or not, pain probably slowed me down a little, but it didn't stop me (story of my life). this weekend was the break from reality I needed! I laughed so much that my face cheeks hurt, too!
After the 10k, we went straight to Animal Kingdom to explore Pandora - The World of Avatar! The Avatar Flight of Passage ride was out of this world! It felt like I was actually riding a Banshee! The effects were super cool. It's like as a futuristic version of Soarin' only you're on a Banshee in Pandora. We rode other rides and took advantage of photo-ops with characters. By 4:45PM we went to get our cars at Epcot before checking into the hotel.
The shower at the hotel was amazing! I started a pillow fight and jumped on all three beds (its my hotel tradition). Two of the divas went on a two hour adventure to pick-up dinner. I took a nap while they were on their adventure. Once they returned, we ate dinner and had a funny conversation about their dinner adventure among other topics that exhausted runners find amusing(basically everything was funny at this point). After dinner, we went to bed.
On Sunday, we caught the bus from our hotel at 4AM to the Magic Kingdom parking lot for the start of the half marathon. Our costume theme was Beauty and the Beast (Beast, Belle, Gaston, and Lumiere). The fellow runners and volunteers loved our ensemble! I video called my sister, Kim, and we sang "Happy Birthday" to her. I also video called Taylor, which was fun even though I woke her up (sorry, Taylor). I got into character as Gaston and boasted about my charm, beauty, and muscles throughout the race. I was arrogant and narcissistic! Whenever anyone cheered, I acted as if they only came to the race to cheer me on. It was a blast! We focused on having fun and stopped for photos along the course. Another running diva was handing out cold towels at the finish line, so we found her and took a selfie together! After her volunteer shift, we all went to lunch.
Most of us took a nap after lunch to rest up for the after party at Epcot Sunday night. We washed our outfits so that we could wear them to the after party. The running divas even made doing laundry fun! Cindy and I explored the hotel. We played ping-pong, went down slides, enjoyed a bedtime story, and learned how to draw Nemo. The after party started at 8PM and ended at 1AM. We entered Epcot around 8:30pm and we left around 1:15PM. We rode rides, ate and drank at the food and wine festival vendors, and took advantage of more photo-ops with characters. In one of the lines, a guy was excited to see Belle (Cindy), until he saw Gaston (me) and then he wanted nothing to do with Belle. He asked me if we could take a picture together and inquired if I could flex for the photo. He handed Belle his phone and before Belle took our picture, he felt my muscle. I told him it was real! lol After taking our picture, Belle proceeded to take a selfie of her and the Beast. It was absolutely hilarious!
By the time we got back to the hotel early Monday morning, it was almost 2AM. Despite not feeling my best, I kept up with the divas all weekend! I experienced stomach pain this weekend. I gave vague answers when I was asked how I was feeling. My plan was not to acknowledge the pain. The pain wasn't constant. However, when it hit me, it took effort not to hunch over, moan from the torment, and wrap my arms around my belly until it went away. Speaking of pain, the bottom of my left foot also hurt. Was it really hurting though, or was it ghost pain? Whether real or not, pain probably slowed me down a little, but it didn't stop me (story of my life). this weekend was the break from reality I needed! I laughed so much that my face cheeks hurt, too!
Wednesday, November 1, 2017
A Seemingly Qualified Urologist
I had my new patient appointment with a urologist today. When the nice nurse lady asked why I was there, I explained I was there to schedule pre-op tests ordered by my colorectal surgeon. The doctor didn't try to offer a different course of treatment, he accepted the pre-determined course and asked if he could call my surgeon to verify exactly what images/results we are looking to take away from the tests. My urologist used his cell phone to call my surgeon on the spot. After he left a message for my surgeon, he explained that he prefers calling to get answers rather than e-mailing or writing letters. I went into the appointment thinking I was going to some podunk urologist in Clermont, but at this point I was seriously impressed and thrilled to have found a seemingly qualified urologist.
We discussed the two tests (cystoscopy and cystogram) I was there to schedule. Both tests put me at risk of getting blood infections due to the colovesical fistula. He mentioned that he and every urologist in the country would not perform the tests without putting me on antibiotics to reduce the risk of infection. I voiced my uncertainty about being allowed to take antibiotics this close to surgery. I countered that if the risks are pretty high, should we even consider moving forward with the tests. Blood infections are nothing to take lightly. Once my uncle got a blood infection, it ruined his chances at surviving what ailed him before getting the infection (he died). My doc assertively recalled that I work in risk management, and said the risk should be analyzed. Without antibiotics, the risk of getting a blood infection is about 40%; whereas with antibiotics, the risk is only about 5%. When my surgeon calls him back, he will confirm that it's okay for me to be on antibiotics. I also called the Cleveland Clinic and they confirmed that I can take the antibiotics my urologist prescribes.
The best part about the whole appointment was that I only had to drop my pants to pee in a cup! It made me wonder why gastros and colorectals don't collect stool samples at every visit.
We discussed the two tests (cystoscopy and cystogram) I was there to schedule. Both tests put me at risk of getting blood infections due to the colovesical fistula. He mentioned that he and every urologist in the country would not perform the tests without putting me on antibiotics to reduce the risk of infection. I voiced my uncertainty about being allowed to take antibiotics this close to surgery. I countered that if the risks are pretty high, should we even consider moving forward with the tests. Blood infections are nothing to take lightly. Once my uncle got a blood infection, it ruined his chances at surviving what ailed him before getting the infection (he died). My doc assertively recalled that I work in risk management, and said the risk should be analyzed. Without antibiotics, the risk of getting a blood infection is about 40%; whereas with antibiotics, the risk is only about 5%. When my surgeon calls him back, he will confirm that it's okay for me to be on antibiotics. I also called the Cleveland Clinic and they confirmed that I can take the antibiotics my urologist prescribes.
- My cystoscopy is scheduled for Wednesday, November 8th. I have to arrive at 9:30am to receive a shot of antibiotics and the procedure will start at 10:30am.
- I have to call SimonMed or an Orlando Health radiology facility to schedule my cystogram. I've already picked up antibiotics from the pharmacy and will take them the day before, the day of, and the day after my procedure.
The best part about the whole appointment was that I only had to drop my pants to pee in a cup! It made me wonder why gastros and colorectals don't collect stool samples at every visit.
Monday, October 30, 2017
Apparently, We Need Some Time Apart
My new gastro as well as my new surgeon ordered me to stop Remicade to allow time for the Remicade levels to decrease in my body before surgery. The reason for stopping it is because Remicade weakens my immune system and the doctors said it would slow down the healing process. I was supposed to have my next Remicade infusion on October 31, 2017. Even though I won't likely experience a literal withdraw from missing my regularly scheduled dose, I'm freaking out a little. They have taken away the one thing that helped me have pain free days, formed stool, control of my bottom end pipes, and regular bowel movements. Imagine my concern over the fact that I will not be getting my medicine and my stomach and bowel movements have not gotten back to how they were before my colonoscopy last week. The drug was designed to intentionally weaken my immune system because my immune system is fucked up when left alone. Without Remicade, I'm worried my immune system will fuck up the current state of my health before surgery.
No matter how poorly surgery goes or how many complications I experience due to surgery, I don't think I will regret the decision to have surgery. How could I allow myself to regret the only solution that was presented to me by multiple doctors? The choice I may regret would be the decision to stop Remicade at my new doctors' request. I could make one phone call tomorrow and go back to my old gastro. His nurse would give me Remicade in heartbeat. I would like to maintain my current health for four more weeks, which would just about get me to surgery day. I would also like my body not to build antibodies towards Remicade while I'm off the medication.
Remicade, it's not you, it's my doctors. You gave me better health than I experienced in over a decade. Apparently, we need some time apart though. Thank you for the amazing days you gave me! I really hope you'll wait for me until after surgery because I don't want to say goodbye forever. I just have to say goodbye right now.
No matter how poorly surgery goes or how many complications I experience due to surgery, I don't think I will regret the decision to have surgery. How could I allow myself to regret the only solution that was presented to me by multiple doctors? The choice I may regret would be the decision to stop Remicade at my new doctors' request. I could make one phone call tomorrow and go back to my old gastro. His nurse would give me Remicade in heartbeat. I would like to maintain my current health for four more weeks, which would just about get me to surgery day. I would also like my body not to build antibodies towards Remicade while I'm off the medication.
Remicade, it's not you, it's my doctors. You gave me better health than I experienced in over a decade. Apparently, we need some time apart though. Thank you for the amazing days you gave me! I really hope you'll wait for me until after surgery because I don't want to say goodbye forever. I just have to say goodbye right now.
Sunday, October 29, 2017
One Month Away
Bowel resection surgery is one month away from today! It's getting harder and harder to stop thinking about it. I am amazed by the support of everyone around me! They have every angle covered! One of my Team Challenge friends is going to give me some supplies so that I can test run the pouch and wafer before surgery in order to prepare for a possible ostomy. My supervisor, co-workers, and HR department have almost eliminated the stress I had about potentially missing up to eight weeks of work. I couldn't ask for a better team at work! My supervisor is extremely understanding and tells me that my health comes before work. My cube neighbor even sat me down to inquire how I was handling it. She let me know that the people around me at work care and she volunteered to carry the weight of my shit if it gets too heavy or if I need a break from acting like everything is okay(Please don't ruin my performance. It's as much for me as it is for you.). My best friend has my back every step of the way and will be taking off work to be with me in the hospital. My Running Divas are with me through this, too. I've only known most of these ladies for about a year and others less, yet they show their incredible support through genuine acts of friendship. They're encouraging and offer valuable insight. One pledged to take the money we are going to be reimbursing her for for making our running costumes and donate it to Crohn's disease research. They offer comedic relief! They have a caring scale that is off the charts. One has taken it upon herself to be my big sister. My Team Challenge friends from south Florida have already asked if they can visit me in the hospital, and I approved. My mom will be with me the whole time and my dad will be with me most of the time, too. Two of my sisters will be with me when I return home after surgery and one of my sisters will fly into town three weeks after my surgery. Other friends and family have voiced their support and let me know they are here for me as well!
How did I get lucky enough to have all of these people in my life? I am overwhelmed by everyone's support! I didn't expect it. Yes, I tend to underestimate relationships. I'm not sure I deserve these awesome people in my life because I'm not sure I'd be that great of a friend if I was in their shoes. I don't like being held accountable for others' expectations, so I try not to put expectations on others. To give my lack of expectation more perspective, I'll tell you what happened today when I expected something. I ran a two miler and five miler today. My mom, dad, and Kelly walked the two miler, but I ran with a Running Diva because I had to finish in time to start the five miler. The five miler started before they finished the two miler. My family rarely goes to my races let alone enters to race. As I was approaching the five mile finish line I searched the crowd for my family. They weren't there. They weren't there because they went back to sit in the car to wait for me when they were done rather than cheer me on. Perhaps it's my fault I was disappointed because I didn't ask them to cheer me on at the finish line. Little things like that are why I try not to have expectations and it's also why the amount of support I'm receiving feels a little strange to me...like I'm not entirely certain what to do with it. I am more grateful for it than I can put into words though!!! One day I'll get better at showing my appreciation. Saying "thank you" doesn't seem like enough!!
How did I get lucky enough to have all of these people in my life? I am overwhelmed by everyone's support! I didn't expect it. Yes, I tend to underestimate relationships. I'm not sure I deserve these awesome people in my life because I'm not sure I'd be that great of a friend if I was in their shoes. I don't like being held accountable for others' expectations, so I try not to put expectations on others. To give my lack of expectation more perspective, I'll tell you what happened today when I expected something. I ran a two miler and five miler today. My mom, dad, and Kelly walked the two miler, but I ran with a Running Diva because I had to finish in time to start the five miler. The five miler started before they finished the two miler. My family rarely goes to my races let alone enters to race. As I was approaching the five mile finish line I searched the crowd for my family. They weren't there. They weren't there because they went back to sit in the car to wait for me when they were done rather than cheer me on. Perhaps it's my fault I was disappointed because I didn't ask them to cheer me on at the finish line. Little things like that are why I try not to have expectations and it's also why the amount of support I'm receiving feels a little strange to me...like I'm not entirely certain what to do with it. I am more grateful for it than I can put into words though!!! One day I'll get better at showing my appreciation. Saying "thank you" doesn't seem like enough!!
Wednesday, October 25, 2017
A Colonoscopy and a Fistula Sighting!
My colonoscopy was originally scheduled for Tuesday, October 24th. After being on a clear liquid diet and drinking a gallon of prescription laxatives (GoLytely) on the 23rd, my bowels were not cleaned out. I only pooped a handful of times. My doc had me go in to see if they could proceed with the colonoscopy. We couldn't do the colonoscopy, so we rescheduled for today, the 25th. They sent me home with a different laxative (Prepopkit) that I did yesterday, the 24th. The prep still didn't clean me out like it should have, but they decided to proceed with the colonoscopy today anyway.
The first prep, the gallon from Hell, made me nauseous, yet somehow I managed to only vomit once throughout the course of the night. Even when I mixed it with Crystal Light, it was still absolutely disgusting. It was supposed to make me shit my brains out, but I only had about 4 or 5 bowel movements. None of which broke the water line. It was supposed to make me have three watery and clear bowel movements. It only turned my turds into what I call dip n dots (my nurse calls them rabbit turds). My poop was still formed, still brown, and still not falling out of my ass at the correct rate. My belly felt bloated and sore.
The second prep was a lot easier. I drank one 5oz. shot of laxatives at 5PM and another 5oz. shot of laxatives at 10:30PM. Before, during, and after, I guzzled lots of water. This one gave me a lot of gas and gas cramps. I had about 8 bowel movements, but each of them contained very little stool. The dip n dots lost a little form with each movement. My poop was still very brown and still not falling out of my ass at the correct rate. When I woke up this morning, my stomach was in knots. By this point, the last time I had solid food was on Sunday. I was hungry, irritable, and frustrated.
When I had my colonoscopy in 2012, I remember that I was not a very nice patient. I was also younger, weaker, and sicker back then. Not being able to pee in cup was a huge issue before my colonoscopy in 2012. I yelled at my nurse in 2012 about not having to go. This time around, my nurse gave me the option to sign a waiver as soon as she took me back stating I wasn't pregnant in lieu of peeing in a cup! It was a huge relief! Another issue in 2012 was that I yelled at my nurse when she couldn't start my IV. When my nurse could not start my IV today, I did not yell at her. I politely asked if there was someone else that could try. Diego, a fit, Hawaiian suffer looking nurse came to start my IV. He got it on his first try! Later, Kelly and I laughed about the fact that I remembered his name, but I didn't remember the name of the nurse that failed to start my IV (her name was Carol, btw). My hand still fucking hurts where she missed my vein.
I have come a long way since 2012. I did not yell at anyone today. I did not curse at anyone today. I think I am mentally and physically stronger than I was in 2012. Sure, the double prep wasn't any fun, but I managed not to lose my temper. Despite my strictures, fistula, and my upcoming bowel resection surgery, I think I am healthier today than I was back then! It's weird, but that's how well I feel compared to how I've felt in the past.
Our theory as to why the prep didn't work properly is that stool could not pass through one of my strictures, so it was being retained at that point. My doc was able to get the scope through my first stricture in my rectosigmoid junction. However, above the first stricture, my doc encountered an inflamed sigmoid area that would not allow the scope to pass. This is where my second stricture is located. A small fistula was seen in this area. Yes, we finally had a visual of the fistula! We even got a picture of it! My doc changed to a smaller scope, but it still could not pass without risking further intestinal damage. The colonoscopy was aborted at that point. (My old gastro also had to abort my colonoscopy in 2012 because he could not pass the second strictured area either.) Biopsies were taken and the results will be sent to my surgeon. My gastro mentioned that he did not see any active disease!!! This is huge in confirming that I really have been feeling well aside from the other issues. The strictures appear to be scar tissue.
I feel like shit, but I'm glad this part of my pre-op do-to list is behind me!
The first prep, the gallon from Hell, made me nauseous, yet somehow I managed to only vomit once throughout the course of the night. Even when I mixed it with Crystal Light, it was still absolutely disgusting. It was supposed to make me shit my brains out, but I only had about 4 or 5 bowel movements. None of which broke the water line. It was supposed to make me have three watery and clear bowel movements. It only turned my turds into what I call dip n dots (my nurse calls them rabbit turds). My poop was still formed, still brown, and still not falling out of my ass at the correct rate. My belly felt bloated and sore.
The second prep was a lot easier. I drank one 5oz. shot of laxatives at 5PM and another 5oz. shot of laxatives at 10:30PM. Before, during, and after, I guzzled lots of water. This one gave me a lot of gas and gas cramps. I had about 8 bowel movements, but each of them contained very little stool. The dip n dots lost a little form with each movement. My poop was still very brown and still not falling out of my ass at the correct rate. When I woke up this morning, my stomach was in knots. By this point, the last time I had solid food was on Sunday. I was hungry, irritable, and frustrated.
When I had my colonoscopy in 2012, I remember that I was not a very nice patient. I was also younger, weaker, and sicker back then. Not being able to pee in cup was a huge issue before my colonoscopy in 2012. I yelled at my nurse in 2012 about not having to go. This time around, my nurse gave me the option to sign a waiver as soon as she took me back stating I wasn't pregnant in lieu of peeing in a cup! It was a huge relief! Another issue in 2012 was that I yelled at my nurse when she couldn't start my IV. When my nurse could not start my IV today, I did not yell at her. I politely asked if there was someone else that could try. Diego, a fit, Hawaiian suffer looking nurse came to start my IV. He got it on his first try! Later, Kelly and I laughed about the fact that I remembered his name, but I didn't remember the name of the nurse that failed to start my IV (her name was Carol, btw). My hand still fucking hurts where she missed my vein.
I have come a long way since 2012. I did not yell at anyone today. I did not curse at anyone today. I think I am mentally and physically stronger than I was in 2012. Sure, the double prep wasn't any fun, but I managed not to lose my temper. Despite my strictures, fistula, and my upcoming bowel resection surgery, I think I am healthier today than I was back then! It's weird, but that's how well I feel compared to how I've felt in the past.
Our theory as to why the prep didn't work properly is that stool could not pass through one of my strictures, so it was being retained at that point. My doc was able to get the scope through my first stricture in my rectosigmoid junction. However, above the first stricture, my doc encountered an inflamed sigmoid area that would not allow the scope to pass. This is where my second stricture is located. A small fistula was seen in this area. Yes, we finally had a visual of the fistula! We even got a picture of it! My doc changed to a smaller scope, but it still could not pass without risking further intestinal damage. The colonoscopy was aborted at that point. (My old gastro also had to abort my colonoscopy in 2012 because he could not pass the second strictured area either.) Biopsies were taken and the results will be sent to my surgeon. My gastro mentioned that he did not see any active disease!!! This is huge in confirming that I really have been feeling well aside from the other issues. The strictures appear to be scar tissue.
I feel like shit, but I'm glad this part of my pre-op do-to list is behind me!
Thursday, October 19, 2017
Bowel Resection Surgery Scheduled at the Cleveland Clinic 11.29.2017
I found myself alone in the car with my mom for three and a half hours on Sunday. [The remaining part of this paragraph has been redacted.]
We met Taylor for dinner on Sunday and even though dinner sucked, it was great to see her! I felt obviously distracted. I was there, but my mind was somewhere else. [Portions of this paragraph have been redacted and/or revised]
Sunday night and even Monday morning, I felt overwhelmed just thinking about the appointment. It was tempting to cry myself to sleep. I hate crying and I especially hate being vulnerable in front of my mom. I'm somewhat of a pro at suffering in silence. No wonder I have a disease to my gut. No wonder this disease is considered invisible. Hell, even I was surprised how many people stood up when the speaker at the Crohn's and Colitis Foundation's Crystal Ball asked everyone in the room with IBD to stand up. Most people just see the parts we want them to see, the strength, the bravery, the perseverance to keep moving forward, the appearance of being as normal as possible. We make it too easy for others to think it's going to be okay for us. Personally, I don't like talking out loud about the struggles and I use jokes as a twisted coping mechanism. It is what it is and life is a comedic tragedy.
When a mom expressed to her son that she would take on this disease if it meant he wouldn't have it anymore, the son knew his mom wasn't strong enough to endure it. That's a true story I heard at lunch on Monday with my Team Challenge friend, Bonnie. After lunch, I did my series of enemas in the hotel room to prep for my appointment at the Cleveland Clinic. Before I knew it, it was time to head to my appointment.
Upon climbing the stairs to the second floor of the Cleveland Clinic, we were greeted by the sign above that stood as tall as me. I checked in and we were called back on time. Before Dr. Second Opinion became my new current colorectal, I spoke with three nurses to give them my medical records and talk about my history with Crohn's disease. In the process, I learned that one of the nurses has Crohn's and another nurse's brother has Crohn's. Next, the Fellow, aka Follower, came in the room and reviewed my records and asked more detailed questions about my current symptoms and most recent procedures.
The moment we've all been waiting for: Dr. Wexner came into the room. After a brief conversation, I dropped my pants and he performed a sigmoidoscopy. He was able to see my strictures and diseased ass! He did a lot of talking when I had my pants down and that made it difficult to concentrate and remember what all he said...especially with the scope up my ass. He mentioned that he reviewed my records and MRI results. He said my other Dr. stopped ordering tests and jumped straight to scheduling surgery. While he agreed that surgery is indeed required, he explained that he wants me to get a colonoscopy, cystoscopy, ECG, e-rays, pre-op clearance, stoma marking, and lab work prior to surgery because he wants to know the most he can about the area requiring surgery before I'm on the operating table and he wants to confirm that I'm fit for surgery. Why didn't the other Dr. think of that? The other qualifying factor was that he was more optimistic in that if an ostomy is required it'd more likely be temporary.
I didn't even have to tell him he was hired. I had just finished buttoning my pants when he pulled out his calendar to start discussing surgery dates. I scheduled surgery for Wednesday, November 29, 2017 at the Cleveland Clinic in Weston, Florida. And, just like that he became my new colorectal!
The appointments I have scheduled currently are:
We met Taylor for dinner on Sunday and even though dinner sucked, it was great to see her! I felt obviously distracted. I was there, but my mind was somewhere else. [Portions of this paragraph have been redacted and/or revised]
Sunday night and even Monday morning, I felt overwhelmed just thinking about the appointment. It was tempting to cry myself to sleep. I hate crying and I especially hate being vulnerable in front of my mom. I'm somewhat of a pro at suffering in silence. No wonder I have a disease to my gut. No wonder this disease is considered invisible. Hell, even I was surprised how many people stood up when the speaker at the Crohn's and Colitis Foundation's Crystal Ball asked everyone in the room with IBD to stand up. Most people just see the parts we want them to see, the strength, the bravery, the perseverance to keep moving forward, the appearance of being as normal as possible. We make it too easy for others to think it's going to be okay for us. Personally, I don't like talking out loud about the struggles and I use jokes as a twisted coping mechanism. It is what it is and life is a comedic tragedy.
When a mom expressed to her son that she would take on this disease if it meant he wouldn't have it anymore, the son knew his mom wasn't strong enough to endure it. That's a true story I heard at lunch on Monday with my Team Challenge friend, Bonnie. After lunch, I did my series of enemas in the hotel room to prep for my appointment at the Cleveland Clinic. Before I knew it, it was time to head to my appointment.
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The moment we've all been waiting for: Dr. Wexner came into the room. After a brief conversation, I dropped my pants and he performed a sigmoidoscopy. He was able to see my strictures and diseased ass! He did a lot of talking when I had my pants down and that made it difficult to concentrate and remember what all he said...especially with the scope up my ass. He mentioned that he reviewed my records and MRI results. He said my other Dr. stopped ordering tests and jumped straight to scheduling surgery. While he agreed that surgery is indeed required, he explained that he wants me to get a colonoscopy, cystoscopy, ECG, e-rays, pre-op clearance, stoma marking, and lab work prior to surgery because he wants to know the most he can about the area requiring surgery before I'm on the operating table and he wants to confirm that I'm fit for surgery. Why didn't the other Dr. think of that? The other qualifying factor was that he was more optimistic in that if an ostomy is required it'd more likely be temporary.
I didn't even have to tell him he was hired. I had just finished buttoning my pants when he pulled out his calendar to start discussing surgery dates. I scheduled surgery for Wednesday, November 29, 2017 at the Cleveland Clinic in Weston, Florida. And, just like that he became my new colorectal!
The appointments I have scheduled currently are:
- Prep for Colonoscopy - Monday, October 23, 2017 (awaiting prep instructions)
- Colonoscopy - Tuesday, October 24, 2017 at 12:30PM (I'm still traumatized from the last one)
- Chest X-ray - Tuesday, November 7, 2017 at 10:30AM
- Pre-op Clearance (ECG, lab work, and other testing) - Tuesday, November 14, 2017 at 8:15AM
- Pre- op Stoma Marking at the Cleveland Clinic - Tuesday, November 28, 2017 at 1PM
- Bowel Resection Surgery at the Cleveland Clinic Hospital - Wednesday, November 29, 2017
Tuesday, October 10, 2017
Playing the Field
Even though I am waiting to see what Dr. Second Opinion has to say, I am still taking steps forward to schedule surgery with my current colorectal. I am playing the field, the medical field. My current colorectal confirmed Wednesday, December 6, 2017 as my surgery date for bowel resection. Now, that date is only tentative on my end because I might cancel it depending on how my appointment goes with Dr. Second Opinion.
I finally received my current colorectal's notes from my appointment on August 22, 2017. I underlined the words and phrases that scare me the most.
When I read the notes, my heart sank. Despite already knowing everything in the notes, reading them took my breath away. This is real. This is really happening. When I see feces in my urine and pass gas through my urethra, I want to fix it. Would it be gross if I posted a picture on here? Do you understand what I'm dealing with? It's annoying and frustrating. On the flip side, when I have bowel movements (which have been easy and beautiful), I wonder if the times I shit out of my ass are numbered, and then my desire to fix the problem diminishes. Soon, I could be shitting in a bag, which fucking sucks because my bowel movements have been amazing since I started Remicade in May of 2016. Today it was hard to accept and harder days are coming. Unless Dr. Second Opinion has drastically different insight and results, my current colorectal plans are below:
I finally received my current colorectal's notes from my appointment on August 22, 2017. I underlined the words and phrases that scare me the most.
- 8/22/17 Barium enema and MR enterography reviewed with patient. The BE did not show evidence of a fistulous tract, but the MR enterography did show evidence of a potential fistulous connection. Given the persistent clinical symptoms of enterovesical fistula and the MR findings, surgical options were discussed. She will discuss the findings with her GI physician and will possibly proceed to a laparoscopic, possible open low anterior resection and repair of colovesical fistula. The risks of surgery including a need for an ostomy which might be permanent were discussed. In addition the concern is that as she has a known anal stricture as well as rectal stricture, that her rectum may be diseased enough that an anastomosis may not be feasible.
When I read the notes, my heart sank. Despite already knowing everything in the notes, reading them took my breath away. This is real. This is really happening. When I see feces in my urine and pass gas through my urethra, I want to fix it. Would it be gross if I posted a picture on here? Do you understand what I'm dealing with? It's annoying and frustrating. On the flip side, when I have bowel movements (which have been easy and beautiful), I wonder if the times I shit out of my ass are numbered, and then my desire to fix the problem diminishes. Soon, I could be shitting in a bag, which fucking sucks because my bowel movements have been amazing since I started Remicade in May of 2016. Today it was hard to accept and harder days are coming. Unless Dr. Second Opinion has drastically different insight and results, my current colorectal plans are below:
- On Wednesday, November 29, 2017 at 1:00pm, I have a pre-op appointment with a urologist.
- On Thursday, November 30, 2017 at 9:45am, I have a pre-op appointment with my current colorectal, which may be followed by testing.
- I am awaiting a call to schedule my "tummy marking". I think it's where they tattoo dots on my belly to guide the doctor to the right spot...or maybe it's like a surgical version of connect the dots.
- On Wednesday, December 6, 2017, I have to arrive at 5am for surgery to start at 7:30am.
Sunday, October 8, 2017
My Upcoming Appointment at the Cleveland Clinic
Next Sunday, I'll be heading down to south Florida to stay the night before my appointment at the Cleveland Clinic on Monday, October 16th. Before I received an appointment reminder in the mail from the Cleveland Clinic, I was just going through the motions. This was just another appointment for me to waste time before actually having to pull the trigger and schedule surgery. Yes, I know I already did that tentatively. I wasn't expecting a different/valuable recommendation. I wasn't expecting to like the Cleveland Clinic better than my current colorectal (I'm sure you can read why in a previous post). However, the doctor listed on my appointment reminder is not the same doctor on the referral order my new gastro gave me. Go ahead, click on the links and be sure to read the first sentence under the About Steven Wexner, MD Section. I now have an appointment with the "Director of the Digestive Disease Center at Cleveland Clinic Florida and Chairman of the Department of Colorectal Surgery"!
I'm not sure if I should be concerned that my appointment is not with the doctor my gastro referred me to, or if it even matters. Is my prognosis so terrible that they switched me to Dr. Wexner, the Director and Chairman? I do know that I find myself having more expectations for the appointment than I did previously. Now, I'm expecting an extremely valuable recommendation. Dr. Wexner is at the top of his field! I'm actually excited about this appointment. I don't think I'm going to call my new gastro to inquire about why I'm seeing a different doctor than the one he referred me to. After October 16th, I hope to have full confidence in whichever medical/surgical path I choose to take.
I'm not sure if I should be concerned that my appointment is not with the doctor my gastro referred me to, or if it even matters. Is my prognosis so terrible that they switched me to Dr. Wexner, the Director and Chairman? I do know that I find myself having more expectations for the appointment than I did previously. Now, I'm expecting an extremely valuable recommendation. Dr. Wexner is at the top of his field! I'm actually excited about this appointment. I don't think I'm going to call my new gastro to inquire about why I'm seeing a different doctor than the one he referred me to. After October 16th, I hope to have full confidence in whichever medical/surgical path I choose to take.
E. Pluribus Unum
On Friday, I had the opportunity to attend the 2018 FIFA World Cup Qualifier - U.S. Men's National Team v Panama. My employer gave single tickets to select employees and somehow I made the list! I sat with six co-workers. It was an absolutely incredible experience! With all of the shit going on in our county, it was an inspiring event to witness! It gave me hope that we can still be one nation...at least we can be at a soccer match, which could be insignificant in the grand scheme of things.
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| Typically, I would only see something like this on T.V. |
To kick things off, both national anthems played and the crowd around me showed respect to both anthems.
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"This is an optimistic piece for trying times. A celebration of strength in diversity that is
the United States at its best. Both the patterns on the scarves and the players on the team come from
diverse backgrounds but work towards a common ideal. We can succeed if and only if we work
together towards the greater good. E. pluribus Unum! Join or Die! I believe that we will win!"
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USA won 4 to 0. Every goal brought an adrenaline rush and another round of beer! I imagine attending the Olympics would feel something like this! I have a lot of people to thank at work tomorrow for that ticket!
Friday, September 29, 2017
I Tentatively Set a Date
I finally received the results from the drug level and antibody test. My levels were great and no antibodies were detected, which was a huge relief! Remicade has changed my life and I'm thrilled the results correlated with how well I've felt since I started taking it.
My second opinion appointment at the Cleveland Clinic in Weston, FL is scheduled for Monday, October 16th. I'm not sure what to expect, but I do know I'm not very optimistic about it.
Now, for the biggest announcement of this post: My bowel resection surgery has been tentatively scheduled for Wednesday, December 6th with my current colorectal. Since it's easier to cancel an appointment than it is to schedule one, I wanted to start the scheduling process so that I have a date to plan around. Even though it's highly unlikely, I might cancel the surgery date if I decide to have the second opinion colorectal operate on me instead. Currently, I'm awaiting confirmation that the urologist and my current colorectal can coordinate their schedules for that date.
The reality of surgery is slowly starting to sink in. No matter how much I hate that this is happening, there isn't anything I can do to change it. I'm stuck in this slow dance with Crohn's disease and the song will not end. As December 6th approaches, I'm sure it will get more difficult to accept. It's already harder to accept today than it was yesterday, but that is likely because I set a date.
My second opinion appointment at the Cleveland Clinic in Weston, FL is scheduled for Monday, October 16th. I'm not sure what to expect, but I do know I'm not very optimistic about it.
Now, for the biggest announcement of this post: My bowel resection surgery has been tentatively scheduled for Wednesday, December 6th with my current colorectal. Since it's easier to cancel an appointment than it is to schedule one, I wanted to start the scheduling process so that I have a date to plan around. Even though it's highly unlikely, I might cancel the surgery date if I decide to have the second opinion colorectal operate on me instead. Currently, I'm awaiting confirmation that the urologist and my current colorectal can coordinate their schedules for that date.
The reality of surgery is slowly starting to sink in. No matter how much I hate that this is happening, there isn't anything I can do to change it. I'm stuck in this slow dance with Crohn's disease and the song will not end. As December 6th approaches, I'm sure it will get more difficult to accept. It's already harder to accept today than it was yesterday, but that is likely because I set a date.
Monday, September 18, 2017
I Couldn't Answer It
I have a confession: I may have been a coward today. Even though I have been expecting a call for 27 days from my colorectal specialist to schedule my bowel resection surgery , I did not have the courage to answer my phone when the scheduling lady called me. When I looked at the caller ID, my heart sank and my hands started to shake. I couldn't answer it.
Sure, I'm still waiting on a prior authorization from my insurance to get a second surgical opinion with the guy my new gastro referred me to. That sounds like a good plan to waste more time. Plus, I'm still waiting on the results from the drug level and antibody test. I can't schedule surgery without knowing how much time I have to let Remicade evacuate my body so that no medicine is in my system at the time of surgery. I mean, I know my target surgery dates are far enough out for it not to matter yet, but they don't know that.
A part of me wants to call my colorectal office back to schedule the surgery and get it over with. BOOM. DONE. It would be a lot easier than having to wait around for the prior authorization that might never come or driving down to the Cleveland Clinic for a second opinion and possibly even surgery. It would simplify things by not giving me any more options to weigh. If I scheduled surgery with my current colorectal and did not get a second surgical opinion, I wouldn't have to contemplate my options any longer. I think a lot of people would judge me for not getting a second surgical opinion. I also might regret not getting a second surgical opinion, and that's why I'm still moving forward to get one. When I schedule surgery for bowel resection, I want to be as confident as I can be about it.
I haven't cried about needing a bowel resection since the first 48 hours I got the news. As hard as I took the news I have somehow accepted it. Don't let my brave face fool you, it still scares the shit out of me! But, there's no way I believe I'm a coward.
Sure, I'm still waiting on a prior authorization from my insurance to get a second surgical opinion with the guy my new gastro referred me to. That sounds like a good plan to waste more time. Plus, I'm still waiting on the results from the drug level and antibody test. I can't schedule surgery without knowing how much time I have to let Remicade evacuate my body so that no medicine is in my system at the time of surgery. I mean, I know my target surgery dates are far enough out for it not to matter yet, but they don't know that.
A part of me wants to call my colorectal office back to schedule the surgery and get it over with. BOOM. DONE. It would be a lot easier than having to wait around for the prior authorization that might never come or driving down to the Cleveland Clinic for a second opinion and possibly even surgery. It would simplify things by not giving me any more options to weigh. If I scheduled surgery with my current colorectal and did not get a second surgical opinion, I wouldn't have to contemplate my options any longer. I think a lot of people would judge me for not getting a second surgical opinion. I also might regret not getting a second surgical opinion, and that's why I'm still moving forward to get one. When I schedule surgery for bowel resection, I want to be as confident as I can be about it.
I haven't cried about needing a bowel resection since the first 48 hours I got the news. As hard as I took the news I have somehow accepted it. Don't let my brave face fool you, it still scares the shit out of me! But, there's no way I believe I'm a coward.
Sunday, September 17, 2017
That Bitch, Irma
By the time I got back into town after Labor Day weekend and went to the store to see what I could get to prepare for that bitch, Irma, the selves where the non-perishables belonged were already empty. One of the few benefits of living with my parents is that they prepared well enough for the hurricane so that all I had to do was basically just show up at their house for shelter. I know it's not very adult of me, but my preparations only included:
- Helping board up my parents house
- Parking my car at my uncle's warehouse
- Packing my duffle in case shit got real
- Charging my phone and back up batteries
- Charging my electric toothbrush
- Putting batteries in flashlights
- Buying bread, green beans, and chips
I probably should have been more concerned than I was, but I did not allow everyone else's stress and worry get to me before the storm. We lost power around 8PM Sunday, September 10th, so we were without power and A/C early on. It didn't take long for the house to get fucking hot! By 9PM, I was asleep on the tile floor in the kitchen with my pillow, sleep mask, and Beat headphones blaring music. The tile was the coolest spot inside and I couldn't hear the storm with my headphones on. I woke up briefly abound 5:30AM and moved to my bed for about two hours until the heat was too much to bare. So yeah, I slept through hurricane Irma.
It was still very windy Monday morning, but I helped clean the yard and move debris to the road. Although the neighborhood lost a lot of trees, the houses didn't have any major damage. The lake was up to the fence in the backyard and all of the docks were under water. As soon as our county lifted the curfew at 6PM on Monday, I went to my uncle's warehouse to get my car. We had gotten a generator and everyone claimed a spot in front of the fan without any room for me, so I slept on a patio chair on the porch with the noise of our neighbor's generator on one side and the noise of our generator on the other. Again, I used my sleep mask, and beat headphones to get to REM.
Tuesday morning I went over to my uncle's house to help him clean up his yard and the mess that was left behind after his sun room roof blew off. I went into work at 2PM and left around 5PM. At home, we had more fans plugged into the generator on Tuesday night! It was still too fucking hot to get comfortable though and I found myself sleeping on the porch for the second night in a row with the annoying generators.
Irma taught me that I am higher to maintain than I realized. I need air conditioning! Please, spare me the whole "it could have been worse speech". Plus, it's difficult to get ready in the dark with a flashlight and cold showers are not my cup of tea. I wasn't stressed before the storm, but I was certainly stressed and uncomfortable after the storm. My bowels were proof with irregular BM's and some stomach pain. Thankfully, running friends with power offered to let me stay with them! I ended up staying two nights (Wednesday and Thursday) with Badass Doreen and her family. Her kindness is overwhelmingly amazing and I owe her big time! It was great getting to know her and her family better.
I went back home after work on Friday because our power came on. Things are slowing getting back to normal...whatever that is.
Sunday, September 10, 2017
Second Long Story: New Gastro
It has been a long time coming for me to switch from Dr. V. to a different gastro. I went from my pediatric gastro to Dr. V., so I've been his patient for over a decade. During that time, I have always had frustrations with the office staff and his numerous nurses over the years. They rarely return message and they often ignore requests (refills, prior authorizations, etc.) Their Patient Portal has made communication with them a little easier and kept them more accountable, but I'm still shocked whenever they get back to me. Recently, my nurse left for the day when she knew I was on my way to the office to get a test kit from her.
To make matters worse, Dr. V. has not been the Dr. I have needed. His style of care is probably the reason I have very little faith in health care. Most of the time, I don't think they can help me, I don't have the energy it takes to cut through all their bullshit to get answers, and I'd rather suffer than waste my time. When I am unwell, he pretty much will just lists medications and ask me what I want to do. I've been blindly throwing darts at the wall and that is not a very good strategy to manage Crohn's disease. Especially, when I am facing bowel resection surgery.
Thanks to a few family and friends that pushed me, I decided to get a second gastro opinion before I schedule surgery. My plan was that if I like the doctor that gave me the second opinion, I would switch to his practice as a new patient. Essentially, using the second opinion as an interview for a new gastro. Numerous people recommended different gastros. I narrowed my search to one practice because I was recommended to three different doctors within that practice.
A policy at this new practice in order to make an appointment for a second opinion required the doctor's approval to give a second opinion. After a few phone calls back and forth with the new practice and waiting around for responses, the first doctor on my list denied to give me a second opinion. Therefore, I could not make an appointment with him. It really pissed me off when the first doctor on my list denied me! Sure, there are two sides to every story, but the side I'm on makes him look like he lacks confidence in his specialty and only wants easy patients that come to him healthy. The second doctor on my list was booked out through October, so I didn't even try to get his approval. I was told the last doctor on my list does not typically approve second opinion appointments. The scheduling lady was very helpful and suggested that since this is time sensitive and I didn't want to wait a couple of months for an appointment, I seek approval from their newest gastro in the practice whom I've heard nothing about from friends. The scheduling lady told me he has approved every second opinion request she has brought to him. I agreed and Dr. K. approved me to make an appointment to see him. In my search, I learned a valuable lesson. Next time, I would not mention I was seeking a second opinion. Rather, I would just try to transfer as a new patient.
My appointment with Dr. K. was on Thursday, September 7th at 5:30PM. I was only on the second page of the paperwork they gave me to fill out when the nurse called me back at exactly 5:30PM. She weighed me (164 lbs.) and showed me to the room. I sent a quick text to Badass Doreen to let her know I was in the back already. Dr. K. came in the room at 5:32PM!!!! My first thought was that this guy wants to make a really good first impression. I let him know my friend was stuck in traffic, but would be there soon. We went ahead and got started by going through my history with Crohn's disease. Thankfully, Doreen didn't miss much. Dr. K. blew me away with his knowledge of the different medicines available and the science behind how they work. He really educated me and made sure I understood by answering our questions. He even stepped out of the room to consult his colleague to verify he was giving me the most accurate information he could. The bar was low going into this appointment, but Dr. K. significantly exceeded my expectations!
Dr. K. did confirm that no medicine available will heal the fistula and surgical correction is the only way to fix it. Based on his explanations, I believe him. My treatment regimen moving forward depends greatly on the results of the Remicade drug level and antibody test I had done on September 4th. Basically, if I have any antibodies towards Remicade, there is little we can do. We could try to hit the antibodies with 6MP or something similar to attempt to knock down the antibodies. The down side with that is that being on Remicade and 6MP or something similar increases my risk of getting cancer.
Before surgery, Dr. K. would pull me off Remicade anyway because Remicade would slow down the healing process and could complicate surgery. This actually surprised me. If I didn't have antibodies or had very few, I could stay on Remicade. However, by getting off Remicade for a period of time before, during, and after surgery, I could have an adverse reaction when/if I try to go back on it after surgery. By now, you know my sentiments towards Remicade. I am going to be shocked if I have antibodies. I just don't think I have antibodies because of how well I feel. If that's the case, I would be willing to try to go back on Remicade after surgery. Dr. K. mentioned that we could do the free blood test again if that's the case to get a better idea of whether or not I would have an adverse reaction.
If I do have antibodies, I will be disappointed and I will most likely have to decide to say goodbye to Remicade. In which case, I would probably have to get surgery sooner than I wanted to while I'm still relatively well. I wouldn't try new meds before surgery because these drugs are not something you can start and stop and start again on a whim. The meds fuck with my immune system that is already fucked up, so reactions are somewhat unpredictable. Considering that I have two solid medication options after Remicade, I cannot be blowing through them. I do not want to get to the point where I am waiting for different meds to be developed because I've tried and failed all of the ones currently available.
Dr. K. also questioned how I feel about my current colorectal specialist. I told him I had confidence in her. In case I want to get a second surgical opinion, he wrote me a referral anyway to a colorectal specialist that Dr. K. said specializes in surgeries on Crohn's patients at the Cleveland Clinic in South Florida. I was pretty confused by this referral. My one constant was my current colorectal specialist, but I don't know if I can ignore this recommendation to get a second opinion. I can at least see what this guy at the Cleveland Clinic has to say so that I can weigh all of my options before scheduling surgery.
I had no uneasy feelings leaving my old gastro behind (haha). I feel differently about the idea of ditching my current colorectal specialist though. She knows me, my ass, my bowels, and my fucking stricture better than anyone. She has seen it every few months since 2012. This new guy might be more specialized with more experience, but he does not know me like she does. My bottom is a disaster according to my current colorectal. She doesn't understand how I am doing so well or how I am able to control my bowels, but she knows I am doing well and that I control my bowels. The scariest thing going into surgery is the possibility of coming out of it with a stoma. My current colorectal said that she won't know if I need a stoma until she gets in there and sees how it looks. I don't think she will underestimate me and what my body can do because she has seen it do amazing things despite it being a disaster. For that reason, I believe I have a better chance coming out surgery without stoma with her as my surgeon. Whereas this new guy might see the disaster that my bottom is and underestimate my body because he doesn't know it was well as my current colorectal.
There are pros and cons to each decision. I'm really confused even though I have strong feelings about which route I am leaning towards. Currently, I'm awaiting the results of my drug and antibody levels. Dr. K.'s office is working on getting a prior authorization from my insurance, and then will have the Cleveland Clinic call me to schedule an appointment.
Now we wait!
To make matters worse, Dr. V. has not been the Dr. I have needed. His style of care is probably the reason I have very little faith in health care. Most of the time, I don't think they can help me, I don't have the energy it takes to cut through all their bullshit to get answers, and I'd rather suffer than waste my time. When I am unwell, he pretty much will just lists medications and ask me what I want to do. I've been blindly throwing darts at the wall and that is not a very good strategy to manage Crohn's disease. Especially, when I am facing bowel resection surgery.
Thanks to a few family and friends that pushed me, I decided to get a second gastro opinion before I schedule surgery. My plan was that if I like the doctor that gave me the second opinion, I would switch to his practice as a new patient. Essentially, using the second opinion as an interview for a new gastro. Numerous people recommended different gastros. I narrowed my search to one practice because I was recommended to three different doctors within that practice.
A policy at this new practice in order to make an appointment for a second opinion required the doctor's approval to give a second opinion. After a few phone calls back and forth with the new practice and waiting around for responses, the first doctor on my list denied to give me a second opinion. Therefore, I could not make an appointment with him. It really pissed me off when the first doctor on my list denied me! Sure, there are two sides to every story, but the side I'm on makes him look like he lacks confidence in his specialty and only wants easy patients that come to him healthy. The second doctor on my list was booked out through October, so I didn't even try to get his approval. I was told the last doctor on my list does not typically approve second opinion appointments. The scheduling lady was very helpful and suggested that since this is time sensitive and I didn't want to wait a couple of months for an appointment, I seek approval from their newest gastro in the practice whom I've heard nothing about from friends. The scheduling lady told me he has approved every second opinion request she has brought to him. I agreed and Dr. K. approved me to make an appointment to see him. In my search, I learned a valuable lesson. Next time, I would not mention I was seeking a second opinion. Rather, I would just try to transfer as a new patient.
My appointment with Dr. K. was on Thursday, September 7th at 5:30PM. I was only on the second page of the paperwork they gave me to fill out when the nurse called me back at exactly 5:30PM. She weighed me (164 lbs.) and showed me to the room. I sent a quick text to Badass Doreen to let her know I was in the back already. Dr. K. came in the room at 5:32PM!!!! My first thought was that this guy wants to make a really good first impression. I let him know my friend was stuck in traffic, but would be there soon. We went ahead and got started by going through my history with Crohn's disease. Thankfully, Doreen didn't miss much. Dr. K. blew me away with his knowledge of the different medicines available and the science behind how they work. He really educated me and made sure I understood by answering our questions. He even stepped out of the room to consult his colleague to verify he was giving me the most accurate information he could. The bar was low going into this appointment, but Dr. K. significantly exceeded my expectations!
Dr. K. did confirm that no medicine available will heal the fistula and surgical correction is the only way to fix it. Based on his explanations, I believe him. My treatment regimen moving forward depends greatly on the results of the Remicade drug level and antibody test I had done on September 4th. Basically, if I have any antibodies towards Remicade, there is little we can do. We could try to hit the antibodies with 6MP or something similar to attempt to knock down the antibodies. The down side with that is that being on Remicade and 6MP or something similar increases my risk of getting cancer.
Before surgery, Dr. K. would pull me off Remicade anyway because Remicade would slow down the healing process and could complicate surgery. This actually surprised me. If I didn't have antibodies or had very few, I could stay on Remicade. However, by getting off Remicade for a period of time before, during, and after surgery, I could have an adverse reaction when/if I try to go back on it after surgery. By now, you know my sentiments towards Remicade. I am going to be shocked if I have antibodies. I just don't think I have antibodies because of how well I feel. If that's the case, I would be willing to try to go back on Remicade after surgery. Dr. K. mentioned that we could do the free blood test again if that's the case to get a better idea of whether or not I would have an adverse reaction.
If I do have antibodies, I will be disappointed and I will most likely have to decide to say goodbye to Remicade. In which case, I would probably have to get surgery sooner than I wanted to while I'm still relatively well. I wouldn't try new meds before surgery because these drugs are not something you can start and stop and start again on a whim. The meds fuck with my immune system that is already fucked up, so reactions are somewhat unpredictable. Considering that I have two solid medication options after Remicade, I cannot be blowing through them. I do not want to get to the point where I am waiting for different meds to be developed because I've tried and failed all of the ones currently available.
Dr. K. also questioned how I feel about my current colorectal specialist. I told him I had confidence in her. In case I want to get a second surgical opinion, he wrote me a referral anyway to a colorectal specialist that Dr. K. said specializes in surgeries on Crohn's patients at the Cleveland Clinic in South Florida. I was pretty confused by this referral. My one constant was my current colorectal specialist, but I don't know if I can ignore this recommendation to get a second opinion. I can at least see what this guy at the Cleveland Clinic has to say so that I can weigh all of my options before scheduling surgery.
I had no uneasy feelings leaving my old gastro behind (haha). I feel differently about the idea of ditching my current colorectal specialist though. She knows me, my ass, my bowels, and my fucking stricture better than anyone. She has seen it every few months since 2012. This new guy might be more specialized with more experience, but he does not know me like she does. My bottom is a disaster according to my current colorectal. She doesn't understand how I am doing so well or how I am able to control my bowels, but she knows I am doing well and that I control my bowels. The scariest thing going into surgery is the possibility of coming out of it with a stoma. My current colorectal said that she won't know if I need a stoma until she gets in there and sees how it looks. I don't think she will underestimate me and what my body can do because she has seen it do amazing things despite it being a disaster. For that reason, I believe I have a better chance coming out surgery without stoma with her as my surgeon. Whereas this new guy might see the disaster that my bottom is and underestimate my body because he doesn't know it was well as my current colorectal.
There are pros and cons to each decision. I'm really confused even though I have strong feelings about which route I am leaning towards. Currently, I'm awaiting the results of my drug and antibody levels. Dr. K.'s office is working on getting a prior authorization from my insurance, and then will have the Cleveland Clinic call me to schedule an appointment.
Now we wait!
First Long Story: Free Remicade Drug Level and Antibody Test
I could make a couple of long stories short by just posting about the outcomes, but I have some time to kill while hurricane Irma does her thing. Plus, a story is incomplete without conflict and struggle.
First Long Story:
As you know I was supposed to get a blood test done that measures drug levels and antibodies with a Prometheus test kit before my Remicade appointment on Tuesday, September 5th. Lynn, the bigger sister I never knew I needed, is one of the newest additions to my arsenal of friends. Most of the time, I don't have the energy or the will power to give a shit. Basically, I'm lazy because I'd rather take a nap. Thankfully, Big Sister Lynn gives lots of shits. She stepped up and scheduled a conference call with one of her other friends with IBD on Wednesday, July 30th. While on the call it was suggested that I verify that my insurance will cover the $2,500 cost of the Prometheus test as well as to look into finding the free test Remicade will pay for twice a year.
When I called Prometheus, it was estimated that my insurance would bring my co-pay down to $500. Even though that meant I would save $2,000, $500 seemed like a lot to spend on lab work. Since I have saved over $100,000 by using co-pay assistance programs in the past, I asked if Prometheus had a co-pay assistance program. Prometheus has a financial assistance program. Contingent upon being approved for the financial assistance program, it would bring the co-pay down to $175. I received the financial assistance application, but I didn't fill it out.
Labor Day weekend was fast approaching, which didn't give me much time to figure this out before my Remicade appointment on Tuesday. On Thursday, July 31st, I had left a voicemail and messaged my Remicade nurse to inquire about the free test that Remicade will pay for. Desperate without a response from my Remicade nurse, I messaged my gastro and his nurse to inquire about it on Friday. To my surprise, my gastro nurse called me within fifteen minutes. Unfortunately, she did not know anything about Remicade paying for the test. My gastro nurse surprised me again when she called back to say she consulted Mr. Google and found that Miraca Life Sciences is the lab that apparently partnered with Janssen (Remicade's pharmaceutical company) and she had Micaca Life Sciences test kit in the office because it's the same kit they use to measure drug levels for Cimzia patients. She let me know that the office would close at noon and I told her I was on my way. I got off the phone with her at 10:40am, spoke with my supervisor, and I was in my car at 10:45am to go pick up that fucking kit. I arrived at the office a little before 11:30am to find that my gastro nurse had already left for the day even though she knew I was on my way. Thankfully, the people at the front desk helped me find the test kit I thought I needed.
After I picked up the kit, I had an appointment with my primary care doctor and I took my mom to one of her doctor appointments. It was 4pm on Friday by the time I could do my own research. I wanted to confirm I picked up the right test kit. First I called my insurance company. It took three people a total of an hour and a half to tell me that the Prometheus test and the Miraca Life Sciences test are out of network and would not be covered. I explained that I am not going to pay $2,500 for the test and asked them what my options were to make it more affordable. The only thing I could do is have my doctor call in to request a "Gap Exception", which would provide full coverage; however, the Gap Exception is contingent upon the insurance company's approval. Insurance could not confirm that the Gap Exception would be approved, nor could they explain factors that could cause it to be denied. At this point, there was no way I could get the Gap Exception, even if it was approved, in time for Tuesday. Insurance did not know anything about Remicade paying for this test.
My next call was to Prometheus because I wanted to inquire if the financial assistance, that was contingent upon the application that I never filled out being approved, would be based on a percentage of the estimated co-pay since my insurance will not bring it down the $500 they originally estimated (would that percentage now be based on the full $2,500), or if the $175 was a fixed co-pay amount for anyone approved. As expected Prometheus had already closed for the holiday weekend.
I have a RemiStart co-pay assistance card for Remicade, so I called the number on the back of the card. RemiStart is affiliated with Janssen, Remicade's pharmaceutical company, but no one there knew of the free test I inquired about. They were able to confirm the only "insurance code" the card applies to is Remicade and I cross referenced the code they gave me with the codes I had for the drug level and antibody test. They didn't match, which meant they were right. Afterwards, I tried calling Janssen directly, but I got an automated machine letting me know they would be back on Tuesday and to call 911 if it was a medical emergency.
My last and most promising call was to Miraca Life Sciences. Thankfully, I was able to speak with someone. He didn't know about Miraca's partnership with Janssen or the free test, but he e-mail three of his colleagues that would know about the free test and would have one of them contact me on Tuesday because they had all left for the holiday weekend.
At a loss for what I should do, I pretty much decided that I was not going to spend $2,500 to measure the Remicade drug levels and antibodies in my system because I am still fairly certain Remicade is working. I expressed my frustration with friends. When I returned home from my run on Saturday, September 2nd, my mom let me know that my Remicade nurse left a message on the house phone. She told me she had the kit for the free test at her office and she can draw my blood before she starts my Remicade infusion on Tuesday. All of that headache for it to be as simple as my Remicade nurse already having the right kit to get the test for free.
The kit she had was an entirely different kit from the two kits I had (Prometheus and Miraca Life Sciences). Her kit actually had Janssen's and Miraca Life Science's name on the box. My Remicade nurse confirmed that she has gotten the test for free for other Remicade patients and assured me that I would not have to pay $2,500. I gave her a guilt trip as to why my gastro and his nurse did not know about the kit for the free test. She plans to discuss it with them and switch out their kits to the kits that allow you to get the test for free. Miraca Life Science did call me after I had already gotten the free test on Tuesday, so I let the call go to voicemail.
Now we wait for the results!
First Long Story:
As you know I was supposed to get a blood test done that measures drug levels and antibodies with a Prometheus test kit before my Remicade appointment on Tuesday, September 5th. Lynn, the bigger sister I never knew I needed, is one of the newest additions to my arsenal of friends. Most of the time, I don't have the energy or the will power to give a shit. Basically, I'm lazy because I'd rather take a nap. Thankfully, Big Sister Lynn gives lots of shits. She stepped up and scheduled a conference call with one of her other friends with IBD on Wednesday, July 30th. While on the call it was suggested that I verify that my insurance will cover the $2,500 cost of the Prometheus test as well as to look into finding the free test Remicade will pay for twice a year.
When I called Prometheus, it was estimated that my insurance would bring my co-pay down to $500. Even though that meant I would save $2,000, $500 seemed like a lot to spend on lab work. Since I have saved over $100,000 by using co-pay assistance programs in the past, I asked if Prometheus had a co-pay assistance program. Prometheus has a financial assistance program. Contingent upon being approved for the financial assistance program, it would bring the co-pay down to $175. I received the financial assistance application, but I didn't fill it out.
Labor Day weekend was fast approaching, which didn't give me much time to figure this out before my Remicade appointment on Tuesday. On Thursday, July 31st, I had left a voicemail and messaged my Remicade nurse to inquire about the free test that Remicade will pay for. Desperate without a response from my Remicade nurse, I messaged my gastro and his nurse to inquire about it on Friday. To my surprise, my gastro nurse called me within fifteen minutes. Unfortunately, she did not know anything about Remicade paying for the test. My gastro nurse surprised me again when she called back to say she consulted Mr. Google and found that Miraca Life Sciences is the lab that apparently partnered with Janssen (Remicade's pharmaceutical company) and she had Micaca Life Sciences test kit in the office because it's the same kit they use to measure drug levels for Cimzia patients. She let me know that the office would close at noon and I told her I was on my way. I got off the phone with her at 10:40am, spoke with my supervisor, and I was in my car at 10:45am to go pick up that fucking kit. I arrived at the office a little before 11:30am to find that my gastro nurse had already left for the day even though she knew I was on my way. Thankfully, the people at the front desk helped me find the test kit I thought I needed.
After I picked up the kit, I had an appointment with my primary care doctor and I took my mom to one of her doctor appointments. It was 4pm on Friday by the time I could do my own research. I wanted to confirm I picked up the right test kit. First I called my insurance company. It took three people a total of an hour and a half to tell me that the Prometheus test and the Miraca Life Sciences test are out of network and would not be covered. I explained that I am not going to pay $2,500 for the test and asked them what my options were to make it more affordable. The only thing I could do is have my doctor call in to request a "Gap Exception", which would provide full coverage; however, the Gap Exception is contingent upon the insurance company's approval. Insurance could not confirm that the Gap Exception would be approved, nor could they explain factors that could cause it to be denied. At this point, there was no way I could get the Gap Exception, even if it was approved, in time for Tuesday. Insurance did not know anything about Remicade paying for this test.
My next call was to Prometheus because I wanted to inquire if the financial assistance, that was contingent upon the application that I never filled out being approved, would be based on a percentage of the estimated co-pay since my insurance will not bring it down the $500 they originally estimated (would that percentage now be based on the full $2,500), or if the $175 was a fixed co-pay amount for anyone approved. As expected Prometheus had already closed for the holiday weekend.
I have a RemiStart co-pay assistance card for Remicade, so I called the number on the back of the card. RemiStart is affiliated with Janssen, Remicade's pharmaceutical company, but no one there knew of the free test I inquired about. They were able to confirm the only "insurance code" the card applies to is Remicade and I cross referenced the code they gave me with the codes I had for the drug level and antibody test. They didn't match, which meant they were right. Afterwards, I tried calling Janssen directly, but I got an automated machine letting me know they would be back on Tuesday and to call 911 if it was a medical emergency.
My last and most promising call was to Miraca Life Sciences. Thankfully, I was able to speak with someone. He didn't know about Miraca's partnership with Janssen or the free test, but he e-mail three of his colleagues that would know about the free test and would have one of them contact me on Tuesday because they had all left for the holiday weekend.
At a loss for what I should do, I pretty much decided that I was not going to spend $2,500 to measure the Remicade drug levels and antibodies in my system because I am still fairly certain Remicade is working. I expressed my frustration with friends. When I returned home from my run on Saturday, September 2nd, my mom let me know that my Remicade nurse left a message on the house phone. She told me she had the kit for the free test at her office and she can draw my blood before she starts my Remicade infusion on Tuesday. All of that headache for it to be as simple as my Remicade nurse already having the right kit to get the test for free.
The kit she had was an entirely different kit from the two kits I had (Prometheus and Miraca Life Sciences). Her kit actually had Janssen's and Miraca Life Science's name on the box. My Remicade nurse confirmed that she has gotten the test for free for other Remicade patients and assured me that I would not have to pay $2,500. I gave her a guilt trip as to why my gastro and his nurse did not know about the kit for the free test. She plans to discuss it with them and switch out their kits to the kits that allow you to get the test for free. Miraca Life Science did call me after I had already gotten the free test on Tuesday, so I let the call go to voicemail.
Now we wait for the results!
Sunday, August 27, 2017
Is Remicade Working?
I've had time to grieve the loss of my good health. It makes me unhappy and I've thrown pity parties for myself. It also confuses me because I don't feel as sick as I'm being told that I am. I still feel significantly better than I did prior to starting Remicade on May 3, 2016.
Am I going to stay on Remicade? I'm going to be getting the stool test and lab work done that I mentioned previously because my doctors don't believe that Remicade is working. However, Remicade absolutely changed my life by giving me my life back. Even though I still get tired and take naps, I'm not sleeping my life away. My memory isn't perfect and sometimes I'm still forgetful. The brain fog has cleared a lot though. I haven't had much pain while on Remicade that compares to the level of pain I dealt with consistently beforehand. My bowel movements are incredibly beautiful and picture perfect, for me. I don't feel like I'm going to die from shitting my brains out on the toilet. Sure, I've had a few rough days and weeks here and there, but I am remarkably healthier than I was in my pre-Remicade days. My primary symptoms are feces and gas passing through my urethra as well as fatigue.
My gastro has a patient portal app to communicate with him and my nurse directly. I inquired when I should make my follow-up appointment with him and whether or not treating the fistula with medicine is an alternative to surgery. In his response, he doesn't believe that medical treatment will fix my current problem with the fistula and he believes that I will need surgical correction. I'm extremely skeptical that medicine can fix this, too. I am also getting intel that other gastroenterologists may believe otherwise. I'm in the process of making an appointment with a different gastro to get a second opinion.
I don't yet agree with the idea of dismissing Remicade. In general, I'm afraid of switching medications. It took me far too long to ditch Cimzia when it wasn't benefiting me at all. As medicine goes, nothing is guaranteed. I could switch meds for the chance it could "fix" the fistula. It may or may not work and I can accept that. My concern is that if I change meds, there is a possibility that I will not feel as well as I'm feeling right now and that is more difficult to accept. The switch could leave me tired with brain fog, in wicked pain, and feeling like I'm going to die on the toilet with shitty bowel movements. I owe it to myself to get a second opinion. I'm willing to listen to a doctor with an opinion that medical treatment could fix the fistula.
The report from my MRI on November 13, 2015 stated that a "fistula [is] suspected". I looked at the MRI images to try to compare them to my most recent MRI, but I have no idea what I'm looking at. It seems possible that it could be the same fistula I'm having issues with now. In that case, Remicade is working, it's just not working to fix the fistula. On the other hand, the fistula I have now could be different than the one mentioned before. In that case, perhaps Remicade isn't working. I know what I think, but I'm not a medical expert. I'll likely be making a tough medical decision in the coming months and I do not feel qualified.
Am I going to stay on Remicade? I'm going to be getting the stool test and lab work done that I mentioned previously because my doctors don't believe that Remicade is working. However, Remicade absolutely changed my life by giving me my life back. Even though I still get tired and take naps, I'm not sleeping my life away. My memory isn't perfect and sometimes I'm still forgetful. The brain fog has cleared a lot though. I haven't had much pain while on Remicade that compares to the level of pain I dealt with consistently beforehand. My bowel movements are incredibly beautiful and picture perfect, for me. I don't feel like I'm going to die from shitting my brains out on the toilet. Sure, I've had a few rough days and weeks here and there, but I am remarkably healthier than I was in my pre-Remicade days. My primary symptoms are feces and gas passing through my urethra as well as fatigue.
My gastro has a patient portal app to communicate with him and my nurse directly. I inquired when I should make my follow-up appointment with him and whether or not treating the fistula with medicine is an alternative to surgery. In his response, he doesn't believe that medical treatment will fix my current problem with the fistula and he believes that I will need surgical correction. I'm extremely skeptical that medicine can fix this, too. I am also getting intel that other gastroenterologists may believe otherwise. I'm in the process of making an appointment with a different gastro to get a second opinion.
I don't yet agree with the idea of dismissing Remicade. In general, I'm afraid of switching medications. It took me far too long to ditch Cimzia when it wasn't benefiting me at all. As medicine goes, nothing is guaranteed. I could switch meds for the chance it could "fix" the fistula. It may or may not work and I can accept that. My concern is that if I change meds, there is a possibility that I will not feel as well as I'm feeling right now and that is more difficult to accept. The switch could leave me tired with brain fog, in wicked pain, and feeling like I'm going to die on the toilet with shitty bowel movements. I owe it to myself to get a second opinion. I'm willing to listen to a doctor with an opinion that medical treatment could fix the fistula.
The report from my MRI on November 13, 2015 stated that a "fistula [is] suspected". I looked at the MRI images to try to compare them to my most recent MRI, but I have no idea what I'm looking at. It seems possible that it could be the same fistula I'm having issues with now. In that case, Remicade is working, it's just not working to fix the fistula. On the other hand, the fistula I have now could be different than the one mentioned before. In that case, perhaps Remicade isn't working. I know what I think, but I'm not a medical expert. I'll likely be making a tough medical decision in the coming months and I do not feel qualified.
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