Hi, I'm a newbie (suffering from Proctitis)

Hello all,

I stumbled onto this forum while doing research on Asacol. I thought I'd join and say hello.

I was diagnosed with Ulcerative Proctitis when I was 15. I saw a proctologist, who put me on Asacol and a prescription suppository whose name escapes me at the moment. When I was 16, going on 17, it went into remission and I discontinued the medications. When I was 18, and just starting college, the symptoms returned, this time far more severe. I'd run to the bathroom six or seven times a day, feeling like I was about to have a severe bout of Diarrhea, then...nothing but a lot of loud gas. I went back on Asacol, going up from 6 to 8 pills a day, along with a prescription enema that I had to retain overnight (what a pain in the ass). When I was about 21, almost 22, the symptoms started to subside a bit. I think what helped was an unrelated injury that left me hospitalized for a week. I was bed ridden, and consequently, had no need to move my bowels. I can't really prove it, but I think that gave the last six inches of my intestines a change to heal a little. I was able to discontinue use of the enemas, but remained on the Asacol, cutting back to 6 pills a day. I also was able to cut back my doctor's appts. from every six weeks to twice a year, and then once a year. By 2005, he gave me permission to start cutting back on my Asacol dosage. I think I was about 23-24 when I stopped taking it completely.

I have considered myself in remission since about 2005. I'm 27 now, and in the last month or so, I have suffered a flare up. I'm not really sure why it flared up all of a sudden. I know most medical experts think that diet and lifestyle have nothing to do with it, but I don't agree. I was drinking a beer or two a day, along with taking blood thinners like extra strength aspirin and prescription ibuprofen have had an effect. I was also eating pretty much whatever I wanted. I'm lactose intolerant, but that usually only keeps me away from milk and ice cream. I used to be able to eat cheese and yogurt. I was also eating a lot of spicy and/or exotic food.

I have since stopped drinking alcohol, carbonated and caffeine products, lactaid, and have stopped eating anything with cheese or spicy ingredients. I tried switching to Tylenol, but that upset my proctitis too, so I'm not taking any kind of painkillers at the moment. If I get a bad headache or joint ache, I just grit my teeth and bear it. I've also started using benefiber, although I'm not sure how effective this really is yet. I don't have any sort of medical coverage anymore, so even if I wanted to see my proctologist (which I don't) I couldn't afford it. The last couple times I saw him, he had nothing new to tell me, and we also had a heated discussion on whether or not diet helped or hurt. I insisted that staying away from things like soda and dark green vegetables helped. He looked at me like I was crazy. My plan now is to try and get in touch with my family doctor, shelling out the money for an appt., to see if he'll write me a prescription for Asacol that I can use to order it from Canada.

So there's my story. I know my problems are not severe as most on this board, but any advise would be most appreciated. Thanks for reading!

I think fruitgirl is right - if only you'd stayed on the Asacol, even a smaller dose of it......! It's important not to go off it completely. And - I once went into a full-fledged bloody flare from taking Advil. That's one of the possible side effects of NSAIDs - even people without these Ulcerative P. or C. diseases can have bloody D!

I hope the resource guide has some helpful info for you!

Do you have a GI doc? If so, I'd go see him for another opinion. I agree with fruitgirl about the meds being a long term thing than until you are feeling better.