Full of Shit on the Fourth

Inquiring minds want to know how my bowel movements have been, so I decided to write my Shit Horoscope.  My pooping habits haven't been regular lately. Constipation has been ruling my zone with occasional diarrhea increasing the unpleasant atmosphere in my colon. There are either too many poo vibes or not enough. Advice from others is not likely to be helpful, but fresh perspectives could change my outlook. Being full of shit is essential before the moon will allow waves in the bowl.

In all seriousness, constipation has been an issue for the past month or two. I'm shitting once every three to four days. While diarrhea is a huge relief from the constipation it still sucks! Constipation drags me down and diarrhea wipes me out.  Before the surgery, I pooped three to four times a day. When I go one day without taking a crap, my stomach  starts to feel uncomfortable. Each day of constipation adds to the pressure in my gut. I get the sensation of having to poop, and then I sit on the toilet for hours with no success. The feeling wakes me up in the middle of the night. 

On July 4th, I ran a four mile race with Lynn. I had not pooped in four days and being full of all the shit slowed me down. It wasn't until I arrived at the race that I realized how terrible I felt. My stomach didn't feel well. I had the urge to poop, but I knew I wouldn't be able to so I didn't even try. I walked a lot.  It was hard to run with the uneasy feeling. My average pace was 11 minutes per mile, which was slower than my first race back after surgery. I was definitely disappointed in my performance because my training runs leading up to the race were significantly better. 

I can turn off nearly every thought except my thoughts about the state of my bowels. When will I poop again? When will I stop pooping? What if I shit myself at work? Can you tell I'm constipated right now by looking at my face? If I poop before my run, it will be an amazing run! I am bearing down too hard. I'm going to give myself hemorrhoids. What if I have a blockage?  I sweated more sitting on the toilet trying to push out a tiny dip n' dot turd than I did when I ran the four mile race. I just want a beautiful bowel movement every day. I will be grateful for my good shits even though they don't occur as frequently as I would like.

 

Fart in a Bottle

Kim has been in town for the past week and she leaves to go home tomorrow. I wish we had more time to spend together. At dinner tonight with my family, I reminisced about the meltdown I had the last time she was in town and how far I have come since then. During Kim's last visit, I was just about a month into recovery from my first surgery. When she hugged me before she left to go to the airport, I lost it. I sobbed about how overwhelmed I felt with the stoma and ostomy. I cried because recovery was hard and it sucked. Tears also found my face-cheeks because I knew I was going to miss her. I was a mess. I felt defeated even though surgery went better than expected.

My family was shocked to learn that I had been overwhelmed and emotional about the surgery and ostomy. Is that a testament to my ability to keep things bottled up?  They couldn't have known I struggled coping with my new reality if I didn't tell them. For having uncontrollable bowels at times, I sure know how to keep shit to myself. My instincts were to avoid feelings, bury them, and hope they went away. For the most part, it worked. My emotional maturity is questionable. I don't know what it was about that moment with Kim that cracked the bottle with the things. Once she left, I collected myself and put the things back in the proverbial bottle.

I hugged Kim goodbye tonight and I didn't have a meltdown. There weren't any feelings I was suppressing either. I am a lot stronger emotionally and physically than I was a few months ago. I can't wait to see her in August!!!

I think if I trapped a fart in a bottle and I left it in there long enough, eventually it would not stink when I opened the bottle. I also think if I bottle up feelings long enough, eventually they will lose their potency when/if the bottle gets cracked. I could probably afford to get better at expressing myself. But then again, I think my "fart in a bottle" analogy is pretty fucking expressive. It could also be absolute bullshit.

Hello from the Other Side

I fell a little behind (haha "behind") on blogging. I had my post-op follow-up appointment at the Cleveland Clinic on April 9, 2018. They lifted all of my physical and dietary restrictions and I do not have to go back unless I have major issues! The wound where Scarlett used to be has completely scared over. I finished all three of my Remicade loading doses and I am officially on the eight week schedule. According to my gastro, we no longer have to monitor the stricture I had closest to my rectum because it's not there anymore! That means fewer rectal exams!!! For the most part, I am doing well. Shitty days are to be expected and thankfully they have been few and far between. 

This is What I Wanted

The ostomy reversal surgery took about an hour and half on Wednesday, February 28, 2018. It went well and I'm glad to finally have it behind me. My mom went down to the Cleveland Clinic with me to help me again. Even though I hate needing her help, I am grateful for her support.  Taylor was there on surgery day and visited me again the day after surgery. She told me about all of her upcoming plans and it was a good escape for me. My Team Challenge friend, Bonnie, stopped by to visit me the day after surgery, too.

I basically just stayed in the hospital until I pooped. I pooped late on Friday, March 2nd and I was discharged Saturday, March 3rd. When I pooped for the first time out of my original asshole after surgery, I cried. Okay, I sobbed like crazy in the hospital room by myself.  It was the most emotional and happiest shit I have ever taken in my life. It may have been the least impressive shit in the history of mankind, but it was beautiful to me.

Recovery is going well for the most part. Things are progressing nicely. I've been experiencing occasional stomach aches, but they haven't been lasting for too long.  I can sit up from my bed without pushing myself up using my arms. I can bend over and tie my own shoes. I've been walking and working out on an elliptical. I even jogged today for the first time in nearly four months! At times my bowel movements are erratic, unpredictable, and uncontrollable. I've shit my pants more times in the past few weeks than I have in the past couple of years. Of course, the struggles fuck with me sometimes. When it's hard, I remind myself that this is what I wanted. I didn't want a permanent ostomy. I want to poop out of my first ass even if that means it's messy and I can't trust my bowels sometimes. Should I wear depends when I leave the house or should I risk shitting my pants in public?  I think about bathrooms, flatulence, and bowel movements all the time.  At first, the pain took my breath away whenever I sat up or stood up and walked. Thankfully, the pain has decreased significantly over the past few weeks and I'm able to move pain free now. I think I experienced more severe pain from the ostomy reversal surgery than I did from the bowel resection surgery. Since pain medicine causes constipation, I avoided pain meds after surgery day because I knew I couldn't be discharged unless I pooped. I chose to be in pain to give myself a better chance to poop and get out of there.

The past few months feel like they were an out of body experience and it feels weird to be on the other side both surgeries. As if I've detached myself from it in a way. I've been waiting for this battle with Crohn's to break me physically, mentally, or otherwise. I've been waiting for it to change who I am. It hasn't really broken me or changed me this time though. I've somehow managed to bounce back quickly whenever the current struggles fuck with me. My battle with Crohn's in 2012 seemed more difficult to deal with and definitely broke and changed me more than this current battle. Hell, even my battle with Crohn's in 2014/2015 seemed to break me and change me more than this one and it's likely because I have felt a lot sicker in the past than I have recently. I knew going into the first surgery that if I had to pick a time in my life for this to happen, this is it. I think being in shape and somewhat healthy leading into it as well as having the support of my family, friends, and employer helped me get through this as well as I have.

I had my first infusion back on Remicade on Thursday, March 15, 2018. They pre-medicated me with Benadryl and steroids because the risk of an allergic reaction is higher since I was off of Remicade for over six months. When the Benadryl hit my veins, I took a nap.  Now that I'm in full recovery mode and back on the magic juice, I'm going to start making my comeback!

One Less Asshole

I have finally been cleared for ostomy reversal surgery at the Cleveland Clinic on Wednesday, February 28, 2018. The colonoscopy and biopsy results came back showing mildly active Crohn's disease in my rectum and throughout my colon.The active inflammation won't keep me from moving forward with surgery though. It sucks to be told Crohn's is active again. I haven't had a dose of Remicade since September 5, 2017.  My gastro thinks it's best to wait to start back on Remicade two weeks to a month after surgery.

At my pre-op clearance appointment with my primary care doctor, I had lab work and a urinary analysis (UA) done.  The UA came back showing a urinary tract infection (UTI). I'm skeptical that it was really an infection because I had zero symptoms.  They prescribed Cipro, an antibiotic, and asked me to come back in to get another UA. The second UA also came back showing a UTI even though I had taken Cipro.They prescribed me a different antibiotic (Sulfamethoxazole-TMP). I can't bring myself to believe that the alleged UTI was really an infection as I had not experienced any symptoms. I considered not taking the second antibiotic at all. However, after I spoke with one of my nurse friends, I decided to only take the second antibiotic for three days instead of the prescribed five days.

Surgery is only three days away! I changed my ostomy appliance for the last time today. I'm still trying to wrap my head around it.  In just a few days, Scarlett will be gone and I will be shitting out of my original asshole again! The world will soon have one less asshole in it. This makes me happy! I went into the first surgery expecting to have an ostomy for the rest of my life. Three months later, I find myself going into the second surgery to reverse the ostomy. It's mind boggling! Recovery will have its challenges, but I am ready to get through another surgery. I can't wait to put this behind me.

Surgery time is to be determined on February 28th. They expect surgery to take about two hours and they expect me to be in the hospital for two to four days.

My Ordinary Reality

If you endure something long enough, it will slowly become your new normal. This post is about my new normal. The forthcoming sentences and pictures have strangely become my ordinary reality during the past few months. It may be disgusting. I can't close my browser to stop being repulsed by my new reality though. I have to deal with this shit no matter how nauseating it is at times. It sucks, but I'm getting better at it.

My preferred way to empty the shit in my pouch into the toilet is to lift the toilet seat and get on my knees to get closer to the water line so that I decrease the amount of splash caused by dumping the shit into the toilet.  This is hard on my knees and troublesome when the floor is wet.  Before I got the ostomy, I would never touch a toilet seat outside of my house. I'm great at squatting and hovering. lol  Now, I find myself touching the toilet seat with my hand in every bathroom I use.  There is nothing neat about dumping the shit into the toilet. Even though I reduce splatter, I do not eliminate it. It is common for shitty toilet water to splash back up onto the toilet rim, my hands, arms, and/or clothes. I use wipes and/or toilet paper to clean the opening of my ostomy before rolling it to close it and sometimes my finger pokes a hole in the wipe/toilet paper causing my finger to make direct contact with shit.

I also come in direct contact with my shit on change days. Scarlett is almost always producing output while I change the ostomy appliance. I inevitably end up getting shit on me during the process. I recorded Scarlett shitting on me this morning, but due to technical difficulties I could not upload the video on here. You'll have to settle for pictures instead.

My stoma is now 7/8", which is just slightly smaller than a quarter.

I set out my ostomy supplies to prepare for change day. 

Oh no, Scarlett is about to blow!

She always thinks it's a good time to shit when she's free. She's a non-stop asshole like that. I'm 30 years old and still shitting myself regularly.  

The feeling of victory when she behaves long enough for me to clean and dry the area, and prepare and apply the adhesive parts of the appliance.

Bring it on, Crohn's Just kidding, please leave me alone.

This photo shows that I am okay. I am making it through this. I am pretty fucking amazing!

Progress

On January 15th, I had my post-op follow-up appointments at the Cleveland Clinic. Before my appointment with my surgeon, I had a gastro-graphic enema. During the procedure, they put a considerable amount of liquid contrast up my butt (my original butt) as they took x-rays of my intestines. They warned me that the contrast would cause discomfort and pain, but I felt okay during the procedure while I was on the table. Afterwards, they pulled the tube out of my butt and helped me off the x-ray table. Some of the contrast had leaked out of my butt onto the table causing the paper to stick to my ass when I stood up. I waddled to the bathroom connected to the x-ray room with the paper stuck to my butt. Once I peeled the paper off and put it in the trash, I sat on the toilet to let some of the contrast out of my bowel. I was in such a hurry to get out of there that I put my pants on backwards when I got dressed. It wasn't until I was in the chick-fil-a parking lot struggling to put my phone in my pocket that I realized I had put my pants on wrong. The contrast left over in my bowel caused multiple sensations of and actual uncontrollable bowel movements. It wasn't regular shit coming out of my butt. Rather, it was a combination of mucus and contrast.

At my appointment with my surgeon, the sigmoidoscopy showed possible signs of active Crohn's disease. The sigmoidoscopy was painful due to the remaining stricture close to my rectum. Blood dripped out of my ass onto my pants and floor. I was already wearing my spare change of pants so we just wiped it clean as best as we could. I scheduled a tentative date for the surgery to take down my ileostomy, February 28, 2018. My surgeon gave me orders to schedule a colonoscopy with biopsies with my gastroenterologist. As long as my gastro agrees that I'm ready for the ostomy to be reversed, we will move forward with surgery on February 28th. My nurse was shocked when I told her my troubles with showering and keeping the ostomy appliance dry.  She is a fellow ostomate and she informed me that I do not have to cover it with Press and Seal or anything else it keep it dry because it is allowed to get wet. Apparently, I could swim with an ostomy and not have to worry about keeping it dry. It has made showering easier, but I still dread taking showers.

The drive home from the Cleveland Clinic was absolute Hell! Between the contrast in my bowel from the enema and the air in my bowel from the sigmoidoscopy, my stomach was in wicked pain. In fact, I think it was worse pain than the pain I experienced in the hospital after surgery. I felt like I was going to shit myself the whole way home. It was not fun and it made me wonder how difficult it will be to regain control of my bowels once they turn the pipes back on during the reversal surgery. How much time in my next recovery am I going to spend shitting myself?

At my office visit with my gastro on Friday, my gastro said he was very impressed with the operative notes from surgery and he is pleased to see how well I've recovered. I scheduled my colonoscopy on the first Monday in February. They had two openings this week, but they were both in the mid-afternoon. I chose the appointment on the fifth because it was the first morning appointment available. After we get the results of the colonoscopy and biopsies, we will know whether or not surgery on February 28th is approved. My gastro and I will also discuss starting Remicade again once we have the results and determine if it's best to start Remicade before or after the next surgery based on the current state of my bowels.

Scarlett

The anticipation of surgery is over. The results are in and it turned out better than expected. It wasn't an open surgery, it was laparoscopic. The ileostomy is not permanent, it's temporary and it will hopefully be taken down by early March. I went back to work on January 3, 2018 after being off for only five weeks. Since being discharged from the hospital, the pain has been manageable without pain meds. Everything seemed to fall into place and the best case scenarios prevailed. Even though things have been going better than expected, it doesn't mean that it's been easy.

It's common among ostomates to name the ostomy, also known as a stoma. After many suggestions and much consideration, I named mine Scarlett. She's my second butt, my front butt. She's an asshole. I love that her name has a double "t" like the word "butt". My stoma is a red-ish color and once it's reversed it will leave a scar. Scarlett is not well behaved. She farts and shits at will. Is it okay that I don't like her?

People told me that an ostomy would give me my life back; however, I don't think my life was far enough gone for me to have the same sentiment. Yes, Scarlett is serving her purpose for me to get back to normal one day. I don't see it happening while she's functioning as my second asshole though. If Scarlett was permanent, how would my future look? Right now, I'm just waiting for her to leave so that I can move on with my life.

I have this unexplained, constant fear.  I bring spare clothes with me to leave in the car wherever I go in case she leaks. I carry spare ostomy supplies with me in my purse and I keep spare supplies at work in case the unimaginable happens. What if she leaks? Will I figure out how to minimize the mess and patch the leak? Or, will I have to change the whole fucking thing while she's still shitting? I am still abiding by the dietary restrictions. The fear of a blockage and subsequent emergency surgery has been instilled in me. Is everyone looking at my stomach? Can they see the bag filling with shit through my shirt? Shut up, Scarlett, we are not making friends today. I don't want to go anywhere. I don't want to do anything.

I change my ostomy appliance every three days. Scarlett is supposed to be less active in the morning, but she shits whenever she wants. The changes are the hardest when Scarlett is constantly shitting during the change. I use adhesive remover to remove the bag and clean off the leftover adhesive residue from my skin around the stoma. I use wet paper towels soaked in baby soap to clean the stoma and surrounding skin and I follow that by wiping it down with wet paper towels to remove any soap left behind.  At first, I would measure my stoma and then cut the barrier opening of the two piece appliance at this point.

Barrier Opening. I cut in between the 1" and 1 1/4". This

is the side that sticks to the barrier ring and my skin.

Barrier Opening. This is the side Scarlett peeks through

on and also the side the two piece drainable pouch

connects to.

Now that I know the size of my stoma is slightly over one inch, I cut the barrier opening before removing the bag because Scarlett is an asshole and she can't be trusted in the open. I use skin protective spray and wipes on my skin around Scarlett and as it dries I make sure the barrier opening is cut to the right size making necessary minor adjustments. Next, I open the ring barrier protector (super sticky ring shaped thing that goes around my stoma first), cut it, and stretch it so that it will fit around my stoma. 

Ring Barrier Protector. This is the first thing that

goes on my skin around my stoma.

Cutting it was not advised by most of my nurses, but it allows me to get a perfect fit around my stoma by overlapping a bit of it. Otherwise, it's easy to overstretch the ring and then it won't fit correctly. I do make sure to overlap it at the top and not the bottom since shit is not immune to gravity. I figured if the overlap crack is at the top it will be less likely to leak.  Once the ring barrier protector is around the stoma, I put the barrier opening of the two piece appliance on top by peeling a few layers to reveal the adhesive and putting Scarlett through the hole I previously cut.

After the barrier opening is in place, I connect the drainable pouch. The plastic ring on the bag (drainable pouch) in the picture to the left connects to the barrier opening. The bottom of the bag is rolled up three times and held in place with Velcro as shown in the photo on the right. Once the bag fills with shit, I use the Velcro opening to empty it into the toilet (more on that in an upcoming post). The bags the hospital provided were clear. I hated being able to see my shit through the bag, so I'm glad my prescription bags are opaque. An ostomy is actually considered to be a prosthetic.

Once the bag is off, it's difficult to keep the area clean and dry while doing all of the steps above at the same time Scarlett is shitting. Some changes are harder than others. I am getting better at handling it each time. I recently discovered that Huggies Wipes are amazing when it comes to keeping it clean during high output change days.

My belly definitely looks different than it did before. It's been tough, but I've been tougher!

Recovery in the Hotel

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

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

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:

• 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.

I haven't yet dissected the meaning of all of the fancy medical words.

This song sums up my message to Crohn's disease!  https://youtu.be/8fEoWA9Vz3A

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 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

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

• 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.

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.

I took this when I woke up from my nap yesterday.

 It likely won't look like this for much longer. 

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.

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.

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?

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.

• 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.

Before I left, my urologist asked me how I found his practice. I told him that I called numerous urology groups and his offered the soonest new patient appointment.  Perhaps he was disappointed I didn't select him for his reputation or qualifications.

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.

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.

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!!

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!