I’m a 21-year old senior at Rutgers University. I started to have UC symptoms late 2009 and prior to the actual diagnosis, like many others, thought it was something I ate and that it would go away. In a few months the symptoms escalated as did the colitis and in early 2010 got my first colonoscopy and found out I had pan-colitis. In 18 short months of failed medicines/attempted diets/lifestyles, it was time to have surgery and remove my colon. I had two surgeries, the first to remove the colon and make the J-pouch and ileostomy – and the second takedown surgery to reverse the ileostomy. I enjoy staying active and busy and UC has certainly put a hamper on that.
Technically no more UC because the colon is gone. However, I’m still adjusting to the j-pouch lifestyle and on a good day will go to the bathroom only 8-10 times.
I had just turned 18, just started my freshman year in college – excited, ambitious, invincible. Two months in, I had a weird bug in my stomach that didn’t seem to go away. I found myself going to the bathroom very often but of course thought nothing of it (it’d pass obviously). Finals time came around and it became a distraction from studying how often I was using the restroom, having to stay at my dorm rather than joining others at the library. My parents were convinced I was simply stressing myself out too much and was forced to sit around and relax all winter break….was not complaining. Second semester started and I was completely fine again. Then of course when midterm time rolled around I had started to feel uneasy again. Although I am not entirely convinced stress caused this ‘no-known-cause’ disease, it certainly aggravated symptoms. I finally agreed to see a local GI and get a colonoscopy and in my half dazed waking up sta te he told me I have mild Ulcerative Colitis.
“Uhm, okay? Whatever that is….Can I go back to school now?” I asked him. I did so but not before starting on my first 5-ASA drug, Lialda.
Again things improved and I began to feel somewhat normal again. Then one Sunday night at a friends apartment I had terrible cramps, feeling helpless and was taken back to my dorm. I could not fall asleep as the cramps became worse and a friend took me to the ER at 3 in the morning. I figured I’d wait until 5:30 to call my early rising mother and let her know. The parentals were not happy that I had waited. Oddly enough, a very similar experience happened the very next Sunday while at home – I had ended up in the ER once again. Fast-forward another two weeks and my mild UC had turned into terrible pancolitis and I had spent a horrible 7 days in the hospital. The most frustrating things about that experience were both being stuck in a hospital bed while my friends were out enjoying their freshman year and falling so far behind in classes and missing exams.
I managed to get through that semester with mostly good grades with the help of close friends and understanding professors.
That summer I ended up spending my 19th birthday in the same hospital due to what they called ‘idiosyncratic pancreatitis’ – basically pancreatitis for no seemingly no reason. Within days that cleared up.
Long story short for the next two years:
I tried Asacol, Colazol, countless bouts of prednisone, Remicade, Humira, Prograf, 6-MP, and probably a few others I can’t remember. With the exception of prednisone, which I seemed to become dependent upon, all others failed miserably. It got to a point where I had no hope of a medication working and would agree to try anything for symptoms to improve.
In the summer of 2011 my symptoms and UC got so bad that I agreed to meet with a surgeon at Mt. Sinai and after his promising words of a better life after surgery, I agreed and set up surgery for the next month. In August I had my first surgery (removal of colon and creation of j-pouch). For the first time in a LONG time I did not feel sick. However, living with an ileostomy for 4 months, though got easier with time, was not fun especially for a junior in college. In December, I had my second surgery, got rid of the ileostomy and now poop ‘normally’. VICTORY!
I am still trying to wrap my head around of the ridiculous changes that have happened in the last two-years. Not only that, how quickly things have changed. I had entered college hardly ever getting sick; even a cough/cold for me was rare. Now I wonder what feeling ‘normal’ feels like.
Here are my thoughts and trinkets of wisdom on the matter:
- Don’t be afraid to voice any concerns no matter how socially embarrassing (bleeding from your butt isn’t exactly a conversation starter…)
- Find a group of friends you can be open with about how you’re feeling and that would do anything to help you get through school during your flares. Justin, Mayank, and Maurolino…here’s to you pulling me through.
- For those type A personalities such as myself, it’s OKAY not to be the best at everything. I thought I had to do everything to get as close to a 4.0 grade point average to stand out. Breathe. Go to class and enjoy your time (as best you can with this debilitating disease – it’s hard I know). Quite frankly, with that attitude you’ll learn more anyway.
- Lastly, don’t be afraid to tell your professors that you have this disease (no need to be specific) and may need to leave class or even not attend from time to time. Some of my greatest relationships with professors began with that sort of conversation.
Good luck to everyone and know that with the help of others, you are strong enough to get through whatever it is you want to (school, work, etc). I’ll be graduating next May accomplishing everything academically I had set out to do. That’s not to say taking time off to take care of your condition/disease is a bad option – it’s just something I did not want to do.
For those of you that have had the j-pouch surgery, how long did it take for your ‘new normal’ to settle in? In other words, am I doomed to be going to the bathroom around 10 times a day, or can I expect more improvement (I’m almost 10 months after takedown).
Where I’d like to be in 1 year:
I am still on antibiotics for pouchitis that will not go away and going to the bathroom at least 10 times a day. In a year I’d like to be off antibiotics and going much less often. Also hope to be an employed member of society!
Unfortunately for me, nothing but prednisone worked. As many of you know, it’s not a drug you necessarily want to be on for a long period of time.
written by Amit
submitted in the colitis venting area
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