I am a 26 year old male diagnosed with UC and PSC in 1996. Growing up with this combination has been both a struggle and has helped me to appreciate every day.
Some more about me:
I have always been quite active despite living in a constant state of active UC. I played sports in school and would strive to be the best despite my clear disadvantage. I also have played in several bands touring in various parts of the country…you can imagine how that would go with UC.
Current Colitis Symptoms:
mild to severe flare
Is it J-Pouch Time
This past week has been a doozie. After much research on Low Dose Naltrexone, I finally convinced my Dr to prescribe it for me. However, he wanted me to have a colonoscopy to set a baseline to see if it was actually helping. Literally 10 minutes after picking up what I thought would be my ticket to remission, I received a phone call from his office nurse. Several of my biopsies had come back as abnormal (precancerous) from the lab and he wanted me to have surgery ASAP. To make matters worse, the combo of the prep and the procedure itself had thrown me into a full blown flare up.
I was diagnosed with UC and PSC in 1996 when I was 12 years old. As most kids wouldn’t, I had no idea what this meant and I just got used to crapping my brains out regularly. I ate like a normal kid and was on prednisone for years at a time. I got used to the blood draws and colonoscopies and other procedures. I would end up in the ER at least once a year for one thing or another. This continued into my late teens and early 20’s. Finally at age 24, I decided to try eating better and cut soda, red bull and other various things from my diet. I noticed a small improvement and continued that way until a flare up nearly put me in the hospital. Then I decided to go further. I went gluten and dairy free, eating mostly organic and drinking goats milk kefir for probiotics. That was the point in my life where I seemed to be almost in remission for a year.
Well this past July, I took a job that moved me to an area where my diet was extremely difficult to stick to. I began eating fast food and drinking soda…no surprise, I am losing weight and seem to be in a downward spiral.
I am looking for some support feedback on my current decision. I am very apprehensive about J-Pouch procedure, but with pre-cancerous indicators, do I have any choice?
written by Tired (Tired of Being Tired)
submitted in the colitis venting area