I’m 26 and I live in Portland, OR. I was diagnosed with UC when I was 16. I am currently in school for my MSW degree and working part time as a counselor.
I’m having mild symptoms at the moment: consistent diarrhea, some joint pain, some cramping, always bloating, some urgency and lots of fatigue. No blood…yet.
I had my first flare at 16. I was living in Alaska, in a town with few GI specialists. I spent 6 months feeling awful and not knowing why. At 16, I was ashamed of my symptoms and shared my experience with very few people.
Immediately after my diagnosis, I was put on prednisone in order to get the symptoms under control. Every time I tapered off, the symptoms came back. I tried sulfasalazine with no success. Tried remicade with no success (and severe side effects). Finally, over a year later, a specialist in Seattle prescribed Asacol and it kept me in remission for 10 years. I’ve been pretty lucky until recently.
When I made the decision to go back to school 1.5 yrs ago, I no longer had insurance that would cover Asacol. Foolishly, I went off the med completely without consulting a GI doctor (after ten yrs of remission, I didn’t even have a GI doctor to consult with).
A year later, my symptoms came back and landed me in the hospital. I got back on prednisone and completely tapered off about a month ago. I’m back on Sulfasalazine because I still can’t afford Asacol. I’ve applied to a medication assistance program, but my application is still processing. I can tell that my symptoms are coming back and in no time, I’m sure I’ll have another flare.
It’s been 3 months since I left the hospital and all of a sudden I’m a complete mess over this. In the past, I’ve tried not to think about UC and how it affects my life because it creates feelings of panic, fear, and hopelessness. During my 10 years of remission I tried my best to repress all of those memories of my adolescence and the 1.5 year period when my life revolved around extreme stomach pain, severe blood loss and the shame of going to the bathroom more than 10 times a day. As my symptoms gradually increase and I head into my second flare of 2012, I’m starting to feel like I’ll never get better.
I have a supportive partner and supportive friends, but they usually try to minimize my feelings of distress, probably because they don’t understand how awful it really is. My parents are a nightmare: when ever I talk to them about UC they become hysterical.
My partner and I are going to try SCD very soon. I’m keeping my fingers crossed that it might help.
I’m feeling very low and trapped by this disease. I feel hopeless about my future, like there is no way out. I worry about colon cancer, which runs in my family.
I hate the thought of losing my colon.
I guess what I’m really needing right now is some words of hope and encouragement. Please lend them if you have them.
I also have a few questions that I’d love to get some thoughts on:
What do others know about colon cancer, it’s prevalence in UC patients, and other related info?
How do people manage the cost of UC? I find that I’m constantly struggling to manage my many medical bills. Anyone know about some helpful resources?
Do you have any advice about starting SCD?
How do other people manage alcohol? I’m not a heavy drinker, but I do like to have a wild night here and there. Any ideas about how to drink without causing harm?
How have others overcome the sadness of living with this disease?
How do others deal with fatigue?