My Brother Has Been Suffering with Colitis for 17 Years Please Help!

Introduction:

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.

Symptoms:

bloated gas, occasional blood in stool, on SCD diet, gluten free diet

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:

Asacol
Rowasa
Prednisone
Seroquel for sleep
Klonopin for anxiety

written by Sister Christian

submitted in the Colitis Venting Area

6 Responses to “My Brother Has Been Suffering with Colitis for 17 Years Please Help!”

  1. AdamMarch 10, 2012 at 7:47 am #

    Dear Sister Christian,

    I’m no sleep doctor or sleep physician, but a really great book that talks in great detail about Sleep is written by the “godfather of sleep” a Doctor named:
    William Dement, PhD from Stanford University
    founder of teh American Board of Sleep Physicians
    inventor of the PSG (polysomnography) sleep test which has been used since the 1970′s for sleep studies.
    And the list goes on and on.
    he’s a great guy, I had the honor of meeting him a few years ago and he said to read his book called
    “The Promise of Sleep”
    and it explains nearly everything you’d ever want to know about sleep. There’s over 80 sleeping disorders that he talks about, and some very simple to understand practical information about sleeping that I swear anybody here could learn from.

    On a side note, I’d think it might be a good idea for your brother to try staying away from fruit until he has been seeing at least a week or more of good hard formed stools. that usually helps out alot for peple in the early days of starting SCD and getting over flares.

    You are a great gift to the UC community! thankfully there are awesome sisters like you out there helping your family members!!!!

    all the best, adam

  2. BevMarch 10, 2012 at 5:06 pm #

    Hi,

    That is a great question about the asacol and enemas. We are told, as UC patients, that we must stay on these so called maintenance drugs. I am sick of taking them as well. I have been on asacol for 15 years, never getting off it even once. I have taken a lower dosage every so often, but have never gotten off it. I am tempted to try, but always worrty that all the really ‘bad’ symptoms will come back.

    You are a wonderful brother! Your poor brother sounds like he’s been through the drug gamut. I can’t believe all the sleeping, and psych meds he’s been on! How can that be good for anybody? Unreal.

    I wish I had answers. I really do. All I can say is that I don’t believe that drugs do anything for ulcerative colitis. They just mask the symptoms, and make us feel ill.

    Thank you for being such a caring and thoughtful brother. Very nice. Your brother needs that, and you.

    Cheers,
    Bev in Canada

  3. AimeeMarch 11, 2012 at 1:46 pm #

    I should add a couple details I left out, he also has IBS as well on top of the UC and he’s not currently on Prednisone that stuff makes him nuts. My brother has been pretty fortunate to have kept the disease under control for so long, he learned he had it about 17 years ago yet with pretty great eating habits and exercise kept it at bay. Thanks Adam I’m going to check that book out. I’m over half way through reading your book and I have to say it’s a really awesome story and great that you were able to remember the details of your journey with this disease enough to share it with the world. I love that through all of it you still had a sense of humor about it. I’ve cracked up several times already because of hearing my brother talk about it and reading you say the same things really makes you understand how important it is to really find someone I’m no one special trust me but to be able to start a website like this to connect with people and help learn about and educate people on this disease is something very special. Bev I’m not an expert and I certainly can’t speak for anyone with UC but in my opinion once you are in a remission from this disease I think it’s a mind over matter thing with the drugs. It’s just like you say the fear of it coming back is always there so staying on them seems like the safe bet. Thanks so much for the input:)

    • AdamMarch 12, 2012 at 7:15 am #

      Hi Aimee,

      I really hope your brother starts feeling better real soon!
      I’d be interested what you think about the sleep book. For me, it has been great to learn and read about that part of medicine/health since its so important.

      Also, I’m thrilled that you were laughing while reading Feeling-Crappy-to-Feeling-Happy :) I know there’s some pretty funny stuff in there, but at the end of the day, that’s sometimes what gets you though situations that UC’ers face.

      Take care Aimee, and I hope you all can have a good week!
      Adam

    • BevMarch 12, 2012 at 12:22 pm #

      Well said Aimee! Mind over matter. Thank you. I’ll take that under advisement, because you probably know just as much as the docs seem to about this confusing disease! Don’t doubt it!

      P.S.I went on steroid enemas once, and they made me nuts, too, believe it or not. And, when I was getting off of them, I got really nauseated and felt terrible, as they were getting out of my body. Steroids and I do not mix, so I get where you’re coming from with your bro and the ‘roids.

      bev:)

  4. AimeeMarch 12, 2012 at 9:03 pm #

    Thanks Bev and Adam! I’m actually learning new things everyday even in regards to what my brother has being dealing with. I found out today he actually was bleeding for the past 10 or so years and November 2011 was the first time it stopped. He was putting up with blood in his stools for all that time and yet still able to function normally like nothing was really wrong the only medication he had been on up to that point was to do the enemas every so often. That’s so bizarre! Again I’m hoping he will get on here and get more involved not just for himself but he has an unbelievable amount of knowledge and could potentially help others with this disease. He has Feeling-Crappy-to-Feeling-Happy and I’m hoping he will read the whole thing because I think it will make him feel less alone in this and possible make him laugh a bit (which by the way is supposed to help you sleep better:)) Everyone have a super week as well!

Leave a Reply