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.