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
Subscribe to:
Posts (Atom)