Hello, I am new to the forum. I was dx'd with IBS and UC well over 20 years ago, don't actually remember when. I am a 62 year old woman. Originally I was on azulfidine & for many years it worked, then went to Acacol, then Lialda and now on Apriso 4 tabs daily for over a year. As each one failed I was changed to another. My last colonoscopy last spring was negative which shocked even my doctor and for a good 7-8 months I was doing really well with minimal diarrhea and semi formed stools. My Dr. had been doing them once a year for the past couple years on me since I was so up and down.
Three days before Thanksgiving I just went to bed one night and the next morning woke up with horrendous diarrhea and from that point forward was going 10-15 times a day, even waking up in the middle of the night having to run, and it was all water. Plus the second I ate it went right thru. I couldn't leave the house for weeks because I had no idea when it would just come out so the couple times I HAD to go out I just didn't eat anything from the night before and after my morning explosions and nothing being left I would venture out petrified I would poop my pants somewhere. This is a horrible way to live!! It was so draining and I was feeling very fatigued as well, although I was very careful to drink a lot of water with electrolytes added. I work from home so luckily was able to continue to work during all this. After a couple weeks I called my GI doc who told me to take 2 Imodium twice a day and 2 tablespoons of Metamucil two times a day, but the only thing I got out of that was that eventually it slowed down to like 6-8 times a day. I began to worry that I had some kind of parasite or something, or even salmonella (because I have water turtles) so he had me do all kinds of tests (but telling me that he didn't think I had anything) but it was all negative so it is obvious it was a huge flare. He put me on three weeks of prednisone (thank the Lord!) and it got me to my baseline of about 5-6 times a day. BUT, when I went to see him last week he said that he was pretty positive that as I came off the prednisone it would all come back again which is not what I wanted to hear. He has been telling me for some time that I am most likely going to go on the "big guns" fairly soon and so when I had the remission period I was incredibly relieved. Well, I guess I am there now though. He wants to put me on Imuran and quite frankly this stuff, as well as Humira and all the other ones scare the living daylights out of me. I have a very strong medical background which may not be to my advantage because it means I look at the side effects way too close. MY GI doc is wonderful, patient and understanding, spends a lot of time with me, and knows that I am petrified of going to the next level but is insisting that I am not going to have a choice as not treating the symptoms I am having is more dangerous. And he was right, coming off the Prednisone the diarrhea is returning as is the frequency although not as bad as before because I still take the Imodium and fiber. I have what is called "Autoimmune Syndrome" with multiple subsets of auto immune disorders as well but they are all relatively under control and actually the prednisone course made EVERYTHING feel better. But, I will not go on long term steroids. This whole thing sucks and it is nice to find a place where when I say all this other people understand. My son (34) is freaking out about my taking the Imuran and doesn't want me to, and my daughter 42 is in the midst of her own poop crisis currently being evaluated by my doctor for the same issues.
So how many of you have been on Imuran and how many of you have had side effects?
How many of you refused to take any of these kind of meds and if so what did you do instead? Also, I read some stuff about probiotics but no one has told me I should be on them, should I?
Post Edited (Have4Paws) : 1/4/2016 12:42:54 PM (GMT-7)