I’m writing this because my brother has been suffering with Ulcerative Colitis for 17 years on and off. He’s had a really bad year and been really sick since they end of 2010. He is married with 3 kids 4,2, and 10 months old. He got progressively worse after the baby was born and in August decided to try fecal enemas, he did it himself and not under the care of a doctor but by November the bleeding stopped. But because of this disease he’s had such bad anxiety, depression, insomnia that the doctors have put him on all kinds of psych drugs and sleeping aids. He wasn’t getting the care he needed from our home state of NY so we thought it would be best to try to go to another state. Cleveland Clinic opened their doors to him and ran all the necessary tests he needed, cat scans, blood work, MRIs, upper GI and lower GI. From the tests there everything actually came out great, his colon actually looks really good and he had been on the SCD diet and obviously something worked because he is no longer in a flare.
My Brother Has Ulcerative Colitis:
The problem now is when he was at Cleveland after they did a colonoscopy on him they decided to put him in the mood disorder unit to get him off Zoloft and Xanax which was good because they really were messing with him. Great! But then they put him on Seroquel, Klonopin(which he was already on) Ambien, and like 10 other medications.
He went in on 9 medications and came out on 13!!!
What pisses me off is they released him and then say he’s fine to take care of the kids(she works full time) when he’s been put on all these drugs that leave him barely functioning. They had him on 300 mg of Seroquel in the hospital, which made him hear voices which never happened before to him so it freaked him out. We really needed to get him home they only were pushing more drugs on him to sleep because he’s only been getting 2 to 3 hours of sleep a night and this has been going on for months and months. We went to get him Wednesday, brought him home, but now what? I think he may have stopped taking the Ambien and downed his dose of Seroquel to maybe 200 mg not sure but it’s still enough to knock a horse down with what he’s taking. Like I said he’s been on the SCD diet but is very limited to what he can eat on it because fruit seems to give him gas, heck everything seems to give him gas. So his weight is down from 165 to 127, I think from being on steroids in the hospital he left at 135. He’s 5 feet 10 so this is dangerously thin. Not sure why the fruit is giving him such trouble still.
He also is still on 12 Asacol which I also would like to know why he is still having to take this? Can he go off it? I hate the words maintenance drug. If he’s not in a flare and not bleeding why still take this? Could it be why he still has such bloating? He still isn’t having great poops they are still coming out he describes it like pushing everything through a pencil. So he can’t eat a lot at once cause his colon isn’t opening up enough to get it through. Again not sure why he’s on at least two different enemas plus the asacol. He does believe now that the fecal enemas must have something to do with him not bleeding anymore and things healing plus the SCD diet. They say they take about 4 months to work and that’s around the same time he stopped the bleeding.
I hope someone can give me some insight into what we can do for him now. I wish he would just come on this site and read how bad he could have it. He really thought he was gonna lose his colon or worse die! And here he is actually in a remission. But now it’s just getting him some sleep and helping him get off these terrible drugs. Thanks for any help you can give me.
Current Colitis Medications:
Seroquel for sleep
Klonopin for anxiety
written by Sister Christian
submitted in the Colitis Venting Area