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20 Year Old with UC, Getting J Pouch this Winter, Any Insight?

Introduction:

My name is Kyle and I’m 20 years old. I was diagnosed with ulcerative colitis in early 2010 when I was a senior in high school. I’m a tall, athletic guy who loves to play baseball, racquetball and lift weights. I also enjoy basically any nintendo game, going out to eat with my friends and watching the Red Sox, patriots and Celtics.

My Current Symptoms:

Currently I have moderate symptoms- going to the bathroom around 4-6 times a day, lots of gas and a little discomfort, but no blood as of now. My symptoms and their severity are a result directly due to how much prednisone I am on at the time, which currently is 15 mg.

Getting a J-Pouch

Diagnosed at age 18 in 2010. It all started when I had consumed a large amount of alcohol. The next few days after I began seeing blood in my stool and eventually that’s all there was. The pain in my abdomen was so immense I thought I was going to die, or at least have an alien bust through me like in the movies.

After seeing my physician, I was referred to a GI doctor who set up a colonoscopy appointment for me. I had to wait a few days before I could go in and boy those were the worst days of my life. Blood was coming out like a faucet and the pain was unimaginable. I honestly do not know how I didn’t end up in the hospital. But I made it to the appointment, where my doctor concluded that I had sever ulcerative colitis of my entire colon and that he would put me on 40 mg prednisone and 2 cort enemas a days.

The prednisone provided instant relief and I managed to reach remission in time for baseball season and I was still able to close out my senior year as one of the top hitters in the state, but that achievement was bittersweet as my colitis flared again and again as the year went on. I attended the University of Rhode Island my freshman year, still waning off prednisone only to get down to 5 mg and then flare up again. Not being able to party with my friends and live life the way a normal college kid should, I transferred to Rhode Island College so that I could commute to school and also be able to reach my doctors much easier.

Since then, I have been on numerous courses of prednisone, imuran did not work, asacol did not work, mesalamine did not work and neither is remicade. Prednisone has been the only medication to provide relief. Over this past Summer I saw another GI doctor in Boston for a second opinion. His results were the same, however my doctor in Providence became frustrated and dropped me as a patient, so I am now seeing a different doctor but from that same group. He has been great, but unfortunately after my last sigmoidoscopy he has highly recommended surgery for me. I believe I can handle anything, if that is one positive thing I have taken from getting UC. But surgery was something I really wanted to avoid. I have accepted that I will have it now, and am relieved that I will hopefully be cured.

UC has changed my life in the sense that I know where many more bathrooms are than what I normally would have, haha. I do not go out as much as I would like and I am very hesitant about dating again (I haven’t had a steady girlfriend since my diagnosis). I know that I cannot drink alcohol, not that it matters anyway because I am still underage. I don’t really mind doctors looking at my butt. I know that it’s their job and they were trained to do it. They look at dozens of butts each day, so I am in no way uncomfortable. I feel that I have handled my UC very well for the past 3 years and my only concern now is that when I have surgery, I really do not want to have to take any official time off from school. I am eager to start my life independently and begin my career in medical imaging, move out and begin dating again with the same confidence I once had.

Colitis Medications:

Prednisone has worked the absolute best for me. But I have also taken:

-imuran
-asacol HD
-hydrocortisone enemas
-mesalamine enemas
-and currently taking remicade, but will discontinue after surgery.

supplements- occasionally a whey protein shake if my bowels are ok that day, 600 mg calcium, vitamin C

written by Kyle Thomas

submitted in the colitis venting area



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