Hi everyone, my name is Alex and I'm suffering from ulcerative proctitis for a few years now.
I think that everything started around 5 years ago after large amounts of antibiotics I took. The symptoms were very minor, just a bit of bleeding and burning/itching, and I didn't pay any attention to them. The doctors told me I had hemorrhoids and that was it.
2 years ago, I took accutane... That's when the worst part started. 3 months in, I developed pain around my belly button and bloody diarrhea. I was on 80mg of accutane. After the symptoms appeared, I stopped the accutane and got some relief. Bloody diharrea was gone and the pain was mostly gone as well. The c-scope and biopsies showed acute colitis with inflamed crypts in the right colon and quiescent/patchy active indeterminate colitis with some ulcers in my rectum. The surgeon who scoped me, sent me home with Pentasa pills. I never got better on them, just developed more pain in the same place. I finished all the pills, 1x1g 30days and started looking into diets/quackery.
Present time. My new c-scope only found 10 cm of inflammation in the rectum with some ulcers(did that quackery work??). The doc also mentioned about
small evidence of my past acute colitis present in the biopsies, I think some structural changes, not sure. I was prescribed 1g of salofalk supp. daily and a follow-up in a month. The minor bleeding I had stopped after the first supp. However, I developed some increased urgency and burning after bms.
During the follow-up I reported all of the aforementioned and got Pentasa pills on top of salofalk. It's been almost a month of them and I'm getting even worse in terms of urgency.
I never had diharrea or pains after stopping accutane. No-one in my family has IBD/IBS.
My current symptoms: urgency, some weird soft stool sometimes with flat sides as if something was squeezing it, and lots of gas. Some days I feel like I'm the first human-gas factory
However, I didn't have this much urgency before! My morning routine is as follows: try to have a BM x5 times, some small amount of it comes out. Eventually I need to go to work I put my cloths on, swear out loud and step outside. 5 minutes after or immediately, I get such a strong urge, sometimes with pain, that I almost need to run for my life lol. Now I just had a 12h total flight with lay-overs, I must admit it was quite challenging... But hey, I always liked challenges lol.
Should I stop taking the pills? Has anyone been in a similar situation?
Best regards to all of you. I'm sorry that you have to suffer from IBD. It's a deceptive thing. Invisible on the outside but so awful on the inside.
I apologise if I made any mistakes. English is not my first nor the second language.
-alex