17 years
May 5 2022
That is how old I was when I got diagnosed with Ulcerative Colitis (UC) and had my entire colon (large intestine) removed. I started 2005 with a long lasting tummy ache. My regular doctor was able to tell something was making me sick but couldn’t figure out what. In April I went to see a pediatric gastroenterologist who instantly suspected UC. Why pediatric? Because I was only 17. I didn’t even get to go home after the appointment. I was instantly admitted to the children’s hospital that Friday so that they could monitor me over the weekend and schedule me for an early Monday morning procedure. I needed to be fully sedated for this procedure. I remember the anesthesiologist ask me how old I was. I told him I just turned 17 and said something along the lines of today I am 18 because of the knockout drugs they were using were for adults only. I tried to make it far when counting down from 10. I think I made it to 8, maybe 7.
The procedure involved shoving some colonoscopy camera things down my throat and up the butt. Thankfully they found no ulcers when checking me out from the top entrance. Unfortunately my colon was so full of ulcers that they couldn’t scope past the first major bend in the colon. UC confirmed! My doctors said it was one of the most aggressive cases they had ever seen, especially on someone as young as I was at the time. They instantly started me on different drugs that help stabilize the UC symptoms. There were so many different drugs to take at different intervals that my dad had to create an excel spreadsheet printout to help us keep track of what to take when. After 2~3 weeks it was clear the drugs were not working well and I had to make a choice. I could continue to try the drugs, hope we find a good combination, but the outlooks of this life were not good. The other option was to totally remove my colon, which had a small chance of death on the operating table but had a good chance of a decent life after recovery. It didn’t really feel like I had much of a choice and in early May I went in to have my colon removed. This time I was sent to a regular hospital. I instantly went from being one of the oldest patients at the kids hospital to being one of the youngest patients at the regular hospital.
My surgeon let me know the goal was to remove the colon, then attach the end of the small intestine to my anus. A small portion of my small intestine would be cut in half and sewed back up to create a small pouch that will act as a pseudo colon. After the recovery process it means I would poop out the same hole as you normal people, just with a different consistency. The connection needed some time to heal so I was given a temporary ileostomy bag. Basically they cut a small hole on my abdomen and poked a part of my small intestine out. Yup, they gave me a second asshole on my abs. That site is kept clean with some very fancy medical tape thingy and all of my biological waste emptied out into an attached bag. I originally was supposed to have this bag for only a month or 2 but I ended up with some complications which made me keep it until the Fall of that year.
The first big complication was me getting pancreatitis. After I was released from the big surgery I was allowed to eat like a normal person with no real restrictions. My grandparents had come over from France since my illness made us cancel our family’s trip to France. My grandfather was an amazing cook and pastry chef and made me a ton of authentic crepes. I was not a heavy person before my illness and I had lost some weight before and during the surgery so I went to town and downed more crepes than a normal person should. The combination of all those calories plus my recent surgery really angered my pancreas. The best way to treat pancreatitis is to not eat anything orally while the pancreas heals. That’s kind of a problem given my weight loss. They ended up “feeding” me via IV. IVs are only good for 2~3 days before the blood vessel collapses and a new IV location is required. I had gone through so many IVs since my illness started that nearly all of my blood vessels in my arms were no longer IV-able. At one point they had to stick the IV in my hand since that was the last good vein left. This was not sustainable so they installed a PICC line. Basically it is a fancy IV that has a tube going inside the blood vessel and ends close to the heart. These PICC lines can last a month or so which helped lower how many IVs I needed.
Unfortunately my PICC line feeding caused my second big complication, jaundice. I remember that I was about to head out on July 3rd to grab some fireworks. As I was about to head out the doors my mom stops me and became worried. My eyes and skin were turning yellow. Back to the hospital I go! I remember having some issues when I got admitted where they had difficulties getting an IV in me. I had a good 3~4 different nurses try, each with their own trick, yet none succeeded. Even the nurse who goes out on emergency helicopter calls and is used to put IVs in people who are almost dead failed to IV me. It took an anesthesiologist to work his magic on my trusty hand vein to get an IV in. This time around my liver was starting to give out. The PICC line feedings were getting too much for it. This complicated things since my pancreatitis was still flaring up and needed more time to heal. The solution was to shove a tube up my nose, snake it into my stomach and keep going into the small intestine so the output is past the pancreas. I can easily say having that tube shoved up my nose is one of the top 5 worst experiences from my entire UC saga. Thankfully though it worked! I had that tube in long enough that I still had it on when I started my Senior year of HS and almost made it into my senior yearbook picture. I was very worried when it came to its removal. It was very uncomfortable any time the tube moved a little in my nose. On the day of the removal I asked my nurse if I could remove it myself, in the hopes I could mitigate the discomfort and pain. After a few second of struggling the nurse told me she could do it a lot faster and I wouldn’t feel a thing. I agreed and before I could comprehend what was happening she had grabbed the end of the tube and yanked like if she was starting a lawn mower. In less than a second the tube was removed from my nose and to the nurse’s credit I did not feel a thing.
The third main complication happened in parallel to the above 2. When I had my colon removed and the ileostomy bag added I only weight something like 80lbs. As I recovered I started putting on weight, but this made the little bit of small intestine that was sticking out of my abdomen retreat under the surface of the skin. This wasn’t a huge deal at first since I was only supposed to have this bag for a few weeks, but as the other 2 complications pushed the bag removal surgery father out this sunken small intestine thing grew troublesome. My stomach acids started eating away the skin by the incision where my small intestine was supposed to stick out. Let me tell you this is not a pleasant feeling and is another one of my top 5 worst experiences from this saga.
Given my recent luck I was worried some new complication would pop up after the bag removal surgery. To my pleasant surprise the only thing that happened is I didn’t pee for 2 days. My surgeon told me on the second day that if I didn’t pee on my own by the end of the day they would insert a catheter. They had inserted a catheter during my first surgery, but I was unconscious when they put it in. I was unfortunately conscious when they removed it a few days after the first surgery and that experience is another top 5 worst for this saga. Needless to say I did not want another catheter so I mind-over-matter’ed my bladder into releasing its contents. I was now officially “cured” of my UC and the never ending healing process could continue. My love for crappy puns and shitty jokes also greatly grew out of this experience.
To summarize, in less than 9 months I went from fine to kinda sick to very sick, then removed my colon (turns out it’s not needed), started to heal only to have complications which slowly healed, and finally end with me looking fairly normal but with a few new scars.
17 years is also how long is has been since this terrible summer. That is now half of my life. I can happily say that I have had no real complications since that summer. I do not have any real eating restrictions, but there are some foods that “work” better than others and some which I try to stay away since they can act as a sort of lubricant for my insides. I’ve found the best foods are those that seem to absorb water with the worst being some oils, fats, and already liquid foods. Sorry soups I didn’t like you before and now I have a reason to stay away. I know you’ve also likely been wondering how I go to the restroom. I got just you would. Ladies, rejoice as I always sit down and close the lid when I’m done! Without getting into details lets just say that I am rarely able to just pee (no #2) while standing up, with many things needing to go just right before I can achieve a standing pee. It took me a few years before I was successful at this task. I’ve also forgotten what a normal poop feels like. The small intestine is able to start sucking up the water out of what you eat but it isn’t anywhere near as good as the colon. This leaves me in a state where I doubt I will ever be constipated again in my lifetime, though if I do it would likely be a serious problem. This is probably TMI but I’ve had one almost-normal poop these last 17 years. It happened during the African Safari I went to in 2018. I was on some heavy doses of Imodium twice a day and the local food served agreed with my gut in just the right way. I was not quite ready for this foreign yet strangely familiar sensation.
17 years ago I wasn’t sure I would live into my 30s but I made it. If I ask that same question today I am still unsure if I will make it another 17 years. That doesn’t mean I am going to stop living my life, my way, at least one day a at a time. Who knows what the future will bring, it is impossible to predict. What I do know is that nurses make the hospitals work and I had a few nurses who were angels and supported me through my ordeal.
