I am 41 years old and was diagnosed with UC 7 years ago. It was triggered, I believe, from the loss of my mother and having year old twin boys on my own. Husband was working 70 hours a week at the time. They are the loves of my life, but as babies and toddlers, they almost killed me.
I tried Asacol, Pentasa, then was hospitalized for a week from dehydration, being severly anemic, malnourished, etc. Went on high dose IV Pred, then went to oral Pred. Tapered off the Pred overr a few months with 6mp, tapered off 6mp over a couple months and have maintained my remission for about 4 years. I've maintained with Asacol all this time. Well, over the past year, I basically flaked on the Asacol and went off (stupid stupid stupid). I'm having a flare. I have IBS as well.
I'll give you my gross history. My UC (I think) is a little different in that I don't really have diarrhea. The first time and now during a flare, I have major urgency, on a bad day run to the bathroom 10+ times, but mostly only get some mucous and blood along with gas, very little formed stool except for every 2 or 3 days when it's hard and hurts. I guess that's the constipation part of the IBS? I actually don't have diarrhea, except that when a flare is bad like now, I am passing yellow, foul smelling liquid with a little blood. For a couple days at a time, when I'm not having any bm's (I know, not the goal here) I feel fine. I'm drinking a lot of water, eating fruits and veg, but definitely could do more. Fiber bulking/psyllium stuff seems to just irritate my UC. The only time I ever had tons of daily, bad diarrhea was coming off high doses of IV Pred to the oral kind.
Anyway, the Asacol and Pentasa doesn't appear to be doing anything. I'm also on the probiotic VSL#3, nothing. I was so excited to be taking Florodix thinking I was heading off the anemia. It made me feel like a million bucks--good energy, etc. Then about two weeks into it, I've taken a turn toward the worse. I have since learned that iron can agitate UC, even liquid form. (wrote a previous post about that.)
I'm having a colonoscopy on the 8th, and would do any anything to not do Pred. Along with all the other evil side effects, I have worked so hard and lost 50lb.'s in the past year the healthy way, 30 of it the Pred weight from years ago. I battle chronic anxiety and depression, so the Pred just thrashes me.
So, the advice: has anyone had this kind of IBS/constipation(ish) UC? Has any kind of diet worked? SCD? Any supplements? Accupuncture? Has any of the other meds gotten you from flare to remission without the evil Pred?? Remicade infusions? Imuran? 6mp? My GI doc is a close family friend, very knowledgeable and caring. He already said we could try Remicade on its own first. If he had it his way, I'd be on Pred now, but I think he'd be open to a suggestion and other options.
Any advice would be greatly appreciated. Only other IBD sufferers understand. I wish I saw this board the first time. Thank you in advance!