My name is Eric, and I am a 20 year old college student. I was diagnosed with Ulcerative Colitis in March of 2016, but I had been feeling the effects of it for long before. I finished my 3-stage J-Pouch surgery in February of 2017. My experience was not without hardships, but overall I am incredibly happy with my J-Pouch. This story is a very detailed recounting of my experiences with UC and this surgery. This means there are some graphic pictures of what my body looked like, so approach with caution if that bothers you.

The Diagnosis

As far back as I can remember, I had a “bad stomach”. I used to wake up at 5:30 in my high school years so that I could spend roughly 45 minutes in the bathroom each morning, going up to three times a morning regularly (my apologies to my other 4 family members all getting ready at the same time). I had myself thoroughly convinced that this was normal, and that the chronic and often times debilitating pain was probably just good ‘ole stress.

I don’t know exactly when my GI issues morphed into UC, or if they had always been UC and I just didn’t show typical symptoms. I know most people would hear what I just said and wonder how I didn’t recognize the issue, but it’s pretty impressive how well you can convince yourself it’s all in your head before you SEE an actual issue rather than FEEL pain. Even when I was struck with a severe case of pain and urgency on a plane during my senior class trip to Disney World (I went to the bathroom almost 6 times during a two hour flight), I did not seek help.

In my freshman year of college, I began to see blood in my stool, which forced me to take action. Luckily, I go to school next to one of the best university hospital networks in the country. An ER trip proved useless, and all I got out of it was a few very invasive exams. I followed up with a GI doctor that suspected IBS with possible constipation. I was still having blood show up. A stool sample showed that I had 10x the threshold for a certain marker for inflammation, and a colonoscopy confirmed my diagnosis of indeterminate Inflammatory Bowel Disease. In subsequent doctor visits, it would be all but confirmed it was UC, as opposed to Crohn’s. In the following months, I spent two weeks hospitalized and finally found relief with Remicade IV infusions. They failed within 4 months. Enter August 2016.

The Surgeries-Part 1-Colon Removal & Formation of Ileostomy

My surgeon does J-Pouch surgery in 3 stages. First, the colon is removed and the end of the small intestines is pulled through the stomach. A bag, attached to the skin with adhesive, collects the waste as your body doesn’t have control of the muscles located in your small intestines. This step was done laparoscopically, which means small incisions were made and robots were used to do the work, rather than large open incisions.

I had prepared for this as best as I could. I had met with ostomy nurses in the weeks leading up, I had watched videos on changing the bag, and I had gotten myself used to the sight of seeing human intestines on the outside of the body. Upon waking up after the 2 hour surgery, I quickly became aware of all that was going on. Not going to lie, I was pretty blasted on opioids, but I was aware enough to know that something was different. Recovery for any major surgery like this generally goes the same for the first 24 hours. No water, sucking on ice cubes, calling family members and friends to assure them that you are in fact alive, and a whole lot of heavy drugs to try and mask the fact that a bunch of people just removed one of your organs.

After the initial recovery, things went pretty well for me. I still can’t exactly put to words how different it is to eat and drink without one’s large intestines at first. It just feels different. However, I did pretty well on this stage in terms of pain management. I quickly adjusted to the bag. Since my surgery was laparoscopic, I did not have to deal with staples. However, I will say that the gas the doctors fill you with to perform laparoscopic surgery really built up in my shoulder like they said it would and that honestly hurt the most. Also, I had quite an experience with a catheter that I’d rather not bring back to the forefront of my mind. (It involves retaining for too long, being catheterized while awake, and a stricture in a urethra. This was by far the most traumatic event out of losing my large intestines). Once I got out of the hospital on the third day after surgery, my true recovery began. This initial surgery was fairly easy in terms of at-home recovery. Spoiler alert: that does not remain true throughout the others

At home, the biggest hurdle I faced was living with an ileostomy. It took about two weeks to regain my appetite. I had watched videos on changing ileostomy bags, so I actually adapted quite quickly. My standard procedure was to do it in the shower (another apology to my awesome family for the hour long showers). I ate EXTREMELY large marshmellows in an attempt to slow down the output from ostomy in the shower. This is the best advice I can give on this topic-it’s also important to note what times in the day your ostomy is normally least active. The hardest part in changing the bag for me was taking off the old one. As you can imagine, something that is made to withstand stool and stick to you for many days is not easy to remove. Adhesive removers helped, but it simply came down to buckling down and biting the bullet while I ripped the outer layer of skin and hair out of your stomach. I did my best to clean the area, because no matter how hard you try, waste straight from your ileum will get on your skin and absolutely destroy it. The first few weeks after surgery, as the skin around the stoma healed, were the worst. The best way to avoid this was to use barrier rings and take the time to cut the adhesive to your exact stoma size. I never completely avoid skin irritation, as my skin is extremely sensitive- I actually developed an allergy to my first brand of adhesive and bag.

I moved away to school about two weeks after my initial surgery. Luckily I only live about 30 minutes away so I could frequently come home to change my bag. By the time I was settled into school, I was changing my bag once a week. This is much longer than any doctor suggested. However, it would stay on throughout the night all week and work fine, and I hated changing them so this was good for me. The first few weeks at school were tough, from trying to avoid showing my bag (I would tuck it into my pants) and my body still adjusting. My roommates were all understanding and aware of my situation so I was lucky enough to never have to worry about that. In the first surgery, the surgeon leaves a stump of your rectum still in. This “rectal stump” still creates mucus just like your other intestines, so I had to go to the bathroom once a day or so to pass this mucus. Often times it was just blood. This was because this last piece of rectum that wasn’t being used was literally falling apart and I was passing it. Though my large intestines was no longer with me, I still had a phantom urge to go to the bathroom like it still was. Some of this was due to mucus I just mentioned, but part of it was just my body being confused (almost like phantom limb in amputees, but on a much smaller scale). This was actually a cause of stress for me. The discomfort of feeling the need to go combined with the inability to go, the knowledge I could not go, and the blood loss from my rectum all created an at time overwhelming anxiety. The best way I coped with this was to distract myself with something else- TV, movies, video games, and the like.

The time between surgeries was great for me. I only had my bag come off once during the night in this time. That was NOT great. Once again I have to thank my family for coming to literally clean up my shit. The constant fear of having that happen again was the only real hardship in the 3 months between my surgeries, after my initial recovery. The best way to combat that was to avoid eating past 8-9 pm. However, some nights my bag unexplainably filled with enough gas to kill a horse and I still don’t know why. That’s one thing I haven’t mentioned yet- the bags with “filters” on them to let your gas out never work past a day. This is because as you sleep your output will get on the filters and block them. Gas was the biggest factor I faced in having to empty my bag. My bag was almost never filled all the way with waste. Gas was always in there to some extent. Overall, this was the first time in my life I was in good health (if you can overlook my intestines chilling on top of my stomach).

The Surgeries-Part 2-Removal of Rectum and Formation of J-Pouch

On December 21st, I got my second surgery. This surgery removed the rectal stump and formed my jpouch. The jpouch was then stapled to my anus. In this surgery, the doctor went farther up on my small intestines and pulled a “loop” of it through my old ostomy hole and then sliced it open. This is called a loop ileostomy. In the first surgery, the end of my small intestines, the ileum, was used for my ostomy. That was now being used to create my internal “pouch”, so this is why the loop ileostomy was necessary. The loop allowed waste to leave through it into my bag so everything with my pouch could heal for the next two months. This surgery was much more invasive, and I was prepared for it. This one required a full old school incision. Doing anything around the rectum is very risky and delicate because of its location. Any error could lead to infertility and a wide variety of health issues down there.

Waking up from this surgery was much different than the first. The pain cut right through the morphine. I was immediately aware of the incision on my stomach. It was a full day before I could get up on this one. The doctors were unhappy with this, so they changed my pain meds to dilaudid and increased the dosing. This worked well for me. I had an intense amount of exterior pain on this surgery, make no mistake. I was prepared for it though. I couldn’t stand straight for weeks, and everything hurt. One thing I was not prepared for was the interior pain. I cannot accurately describe it, but the inside of my body ached in the weirdest way for quite a while after this surgery. For me, it was very anxiety-inducing. It was like discomfort so bad that it was painful. No sharp pains-just discomfort. If you are reading this after your second surgery, I assure you it is normal and goes away. It does not mean something is wrong. However, if you do suspect something is wrong, always contact your surgeon.

My hospital stay on this one lasted much longer. I came home the day after Christmas, but my family did a great job on making my hospital Christmas as good as possible. It was about 3 days before I could eat at all. The problem after each of these surgeries is that you never know how long it will take for your bowels to wake up. I was getting dreadfully sick the first few days after this one because my bowels were just so confused and adapting to their new formation. For the first four days, the output from loop ileostomy was just blood mixed with intestinal fluids. Don’t ask about the smell, it still haunts me. I had staples in for my incision which were quite bothersome given my sensitive skin. I also had a drain in my abdomen. I was unaware of this before my surgery. Basically it was just a 2-foot tube going into my abdomen to drain any excess fluid to avoid an abscess. The removal of that felt like how I imagine it feels to be stabbed in reverse. I let out and audible “what the F***” as the nurse pulled it out, and he said that was a very common sentiment. Eventually I was eating marginally more than a bird and generally feeling better, so I was released to go home.

I was very happy to be home. It is much easier to recover at home than the hospital, but it was still pretty tough. I couldn’t do more than a few minutes of standing and walking for the first two weeks. I was in a tremendous amount of pain, especially laying down, so sleeping was tough. I have to thank my awesome girlfriend for sleeping over every night and keeping me company through that. Once again with this surgery, I had to pass mucus frequently. My pouch was all hooked up and working, so it produced mucus that I had to pass. This false urgency combined with the internal pain I detailed above created pretty extreme discomfort. Time was the only thing that could heal that. I was still on dilaudid, but I tried not to take it. However, this was a bad idea, as it allowed the pain to get a little out of hand. I got back to taking it for about a week. Once the pain subsided a bit, I stopped cold turkey because I was well aware of the addictive nature of these heavy pain meds. It was a little hard to sleep for a few days, as I had formed a minor dependence, but it was worthwhile once this subsided.

I had planned to return to school after this surgery, but by the time school came around I was still hardly able to walk for more than 10 minutes without being completely drained. I took the winter term off to recover and get my final surgery. For the first few weeks of this break, I was still recovering. By mid-January I was able to go out and walk around and have some sense of normalcy. Throughout these surgeries, I lost a lot of weight. At this point I was able 30 lbs down from August. I had very little energy for a few months after the procedure. By February, I was as close to normal that I’d get during this period between surgeries.

The loop ileostomy was very different from the first “end” ileostomy I had. Because it was farther up my intestines, I was going to the bathroom far more frequently. Also, it was mainly just liquid. I took Immodium every day to combat this, but it didn’t do much. Many times, I would get sick at night because my ostomy would put out about a liter of waste in under an hour. This would lead to dehydration and nausea. About 4 times a week, this would happen. The procedure for bag changes was the same, but it was definitely messier and harder due to the increased output. My appetite returned, but I wasn’t absorbing much nutrition. Overall, this 2 month-ish span between this surgery and the final surgery was very tough and often times I was sick or in pain, but I was still able to have a life. This period was definitely worth the result.

The Surgeries-Part 3-Takedown of Ileostomy

February 22nd was the date of my final surgery. It was much easier to prepare for this one, as the past months had been hard. I could not wait to get rid of my bag and be done with surgery. This surgery simply took down the loop ileostomy so that my pouch could be used as a reservoir for my stool. This surgery would be done from my ostomy site, so no new incisions. The doctor knew it was a good time to do it because a few prior I had gotten a test done to test my pouch. My pouch was filled with dye (don’t ask from which end…but I didn’t drink the dye) and xrayed. It confirmed that my pouch had no leaks or flaws. If you are reading this and preparing for that test, don’t let the technician inject you with anything to slow down your bowels. They did that to me and it shut down my bowels for hours, which made me VERY sick.

After this surgery, I was pretty coherent. I didn’t have any drains or a catheter in. One thing about this surgery that is a bit tough is the wound where the ostomy was. It must be left open since it is not sterile (stool had been passing through and near it for months). If it was closed during surgery via staples, I would have had an extremely high risk of infection. During surgery, it was packed and covered. I was lucky that my bowels woke up pretty fast after this final surgery. The only tough part of this hospital visit was the unpacking of the wound… I have a profound fear of needles and things like that, but I was forced to overcome that with this disease. However, having a nurse pull a seemingly endless amount of gauze from a hole my stomach was quite an experience. But I also went to the bathroom like a normal person for the first time in 6 months before I left the hospital! Talk about a milestone.

One of the biggest things associated with a J-Pouch is butt burn. This is a condition where your butt feels like you ate an entire Taco Bell with a bottle of hot sauce to help it go down. That is not an exaggeration. The month after surgery is pretty bad in terms of butt burn. I was going to much because my body was still adjusting, and the stool coming out is straight from the small intestines. This means all of the enzymes for digesting food are in it, which spells disaster for the skin down there. Combine this with not going to the bathroom in 6 months, and you have a pretty fun experience to say the least. My best combat for this was getting a bidet. Also, I was in charge of unpacking and packing my open wound at home. The first time I unpacked it in the shower, it was quite painful. All of the nerve ending are exposed and active, so the peeling and pulling is felt. I left it unpacked that night, so a nurse could come repack it for me the next day. Overnight, the wound closed almost completely, so packing was no longer necessary as it went from 3 inches or so deep to .5 inches deep. I don’t know how that happened, and is probably due to my young age, but I thank my lucky stars I never had to experience wound packing after that.

I know it seems like it was really hard after my third surgery, but it was not. Yes, butt burn was tough. Yes, the wound was tough. But beyond that, it was great. I regained strength and health. I started to eat more. I eventually started a full time internship through school. Slowly but surely the amount of times I went a day went down. Right now, I’m going about 2-4 times a day on average, and it’s been a year since this whole journey started. Before my surgery, I could not remember a day ever where I went to the bathroom once or twice a day. Now that’s happening weekly. I just got over my first bout of pouchitis, which is where my J-Pouch gets inflamed and has similar symptoms to Ulcerative Colitis. A week of antibiotics cleared it right up.

Overall, I am incredibly happy with the results from these surgeries. I am currently doing very well. I’ve managed to gain about 5 pounds and my appetite is pretty normal. I know I talked a lot about the difficulties but even in the hardest times this surgery did wonders for me. During this time, I got a girlfriend, I got a full time internship, I went to concerts, I took a vacation, I took long car rides, and much more. I grew so much from this experience. After it all, I am grateful for everything that happened to me because it is much easier than being bitter. My experience was and is very positive. I do not know what the future with my pouch holds, but I know that right now I’ve never been healthier. My life may be a little different without a large intestines, but for me it’s endlessly better than being sick with Ulcerative Colitis. I hope that I have been able to accomplish whatever it is that brought you here.