Introduction to the Artist Jim:
I was diagnosed this past June with Ulcerative Pan-colitis. Suffered a major flare all summer long. Started feeling better at the end of august and was able to return to school. 3 months into school and finally in complete remission after being on Immuran for 4 months.
Jim’s Incredible UC Story:
Hello fellow sufferers. I’m writing this to try and bring hope to all of you people who really need it right now, I’ve been there. This is especially geared towards people new to the disease and feeling pretty much hopeless, I want to remind you that theres a life outside of this disease and you will get back to it. My names jim, im in my second year of graduate school studying architecture, and 4 months ago i never thought id still be here. If your on this site and reading this you’re probably looking for a bit of hope, tired of uncontrollable runs to the bathroom, late nights, taking medication that doesn’t seem to do anything but make you feel worse, etc. This is how I found this site and god did it make things a bit easier to deal with, but the fact is i was still having to deal with it, which SUCKED. So i’ll tell you my story but the truth is I’m sure it’s very similar to a lot of yours so I’ll run through it as quick as I can, I know it can be relieving to hear others stories.
After being diagnosed I was immediately placed on a high dosage of prednisone and Asacol. I was still going to my summer job, trying to make things appear as normal as possible. The Asacol was making it worse (more blood, more urgency) so I was then put on Lialda which I had an immediate allergic reaction too. I finally quit my summer jobs after i couldn’t even walk up the stairs to my office anymore and was violently using the bathroom every hour, 24 hours a day. In total i spent about a month on these drugs which did nothing but make things much worse. Throughout this process i found this site and started the SCD diet. I was on it for a month and found that it didn’t work, i was also dangerously under weight (99lbs instead of the usual 140) and needed to get some back, which is really hard to do on the diet. I was reallllly disappointed it didn’t work. Adam was really helpful in providing information to me about his experience with the diet and i have to say i really had high hopes for it. But it just doesn’t work for everyone and I had to accept it, which was difficult.
I was finally put on Immuran which i was skeptical/worried about. By this time the prednisone was in full effect and i was getting “better” (steroids are a temporary, yet magical fix) and was able to return to school, after spending my entire summer in my bed.
So things kept getting better and now I am 100%-ish in remmission (enthusiastic “yay”).
The doctor says the next step is to try the Asocol one more time, and try to get me off the Immuran because its a much safer drug long term. So thats my story but back to my point.
I just want to make sure you all know that flares end.
I’m also aware that 4 months can be a short flare compared to some iv read about on here but i do think it gives me a license to instill hope, mainly because i had lost it during my flare. All of it. I ended a fantastic relationship because i was too embarrassed to talk about it and am now dealing with some repercussions of that, which has me thinking a lot of what I went through.
So here’s a metaphor I’ve been working on and I’m sorry if it offends anyone for any reason:
Colitis is an abusive spouse, it marries itself to you, kicks the crap out of you, and then it leaves you flat on your ass only to think about what it did to you. So here’s my advice. Make it so that you can eventually look back on it (which you will be able to) and know you handled it the best you could, that YOU kicked ITS ass. Eat healthy, do yoga, TALK TO FRIENDS, make potty jokes, whatever. Try and stay positive, easier said than done. Stay in touch with your doctor. If you don’t think a drug is working, call his/her ass up and tell them to do something about it. Try diets. It should be your mission to beat the shit out of your UC.
Good luck to everyone.
And a thanks goes out to Adam for starting this interweb commune of toilet abusers.
Some sort of Rectal foam
Submitted by “Jim” in the Colitis Venting Area