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Colitis AND IBS?

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Ulcerative Colitis
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Posted 7/6/2012 12:27 AM (GMT 0)

Hi there,

Just hoping to get some imput...

I have been flaring almost every other month for the last year, been off and on prednisone. Dr wanted to check me again and also see if I have IBS along with Ulcerative Colitis. He said he would not put me on Remicade if I did end up having IBS because it would go overkill. Does anyone out there have Colitis and IBS? How have your medications changed? Have you flared less knowing how to treat IBS? My entire colon is affected with Ulcerative Colitis and now 1 medication has kept me in remission. Its been such a scary time for me and my family along with depressing. I just was looking for some answers. I dont have anyone local that can relate so any imput would be great! =)

Thanks!

Posted 7/6/2012 1:18 AM (GMT 0)
I don't understand your GI. Is he saying that you shouldn't treat your UC with Remicade because it's too strong a med? Does he think that the flares you've been experiencing are not inflammatory but something else, IBS?

Prednisone is not a solution to anyone's problem. It is not a drug you can use long term. Did you get no benefit from the Lialda? Were you using rectal meds as well?
Posted 7/6/2012 1:27 AM (GMT 0)
I think what my GI is saying is that if he finds that I also have IBS with the Colitis, that the Remicade would be too much to treat both?! Thats what it was sounding like. If I dont have IBS, then he wants to treat me with Remicade. I was almost in Remission on Lialda for a year and then after that the Lialda didnt seem to do anything so then I was off and on the Prednisone (which helped short term) and then Imuran. Ive been trying Cort Enemas for a few weeks now which have helped some, but Im only half way better....so I think hes considering something stronger since the others are not putting me in full remission. Its been a crazy cycle. Not fun at all which I know many of you can relate....unfortunately.

So I didnt know if anyone out there who has both (IBS & Colitis), if they are in other meds to treat the IBS that has now helped them stay in remission...

I hope that makes sense =)

Posted 7/6/2012 1:32 AM (GMT 0)
I think your GI is basing his opinion that your flare is IBS related because he cannot see enough inflammation in your colon from c-scope or biopsies. Just my guess. But I remember when I was first diagnosed 12 years ago and it was just ulcerative proctitis. My symptoms were very bad and the inflammation at that time was not as bad as it got later.

My flare was never-ending for 10 years. No doctor ever said it was IBS however. In my mind who cares what it's called just fix it. But it is not acceptable medical protocol to treat IBS with Remicade.

Have you ever tried diet modification to see if you can get improvement in symptoms? I was faced with biologics including Remicade but didn't want to go there so tried diet mod. for the 4th or 5th time over the years and got lucky that something finally worked.

If I were you I wouldn't continue using prednisone but your choices are limited.
Perhaps you need a second medical opinion and if you haven't had a c-scope in over a year maybe schedule one with a new doctor.

Best wishes.
Posted 7/6/2012 1:39 AM (GMT 0)
Thank you so much for sharing! I already feel encouraged. I enjoyed looking at your signature. Its awesome that you are Paleo and did the Spec Carb Diet. Those are 2 that I really looked in to =) When Im back on track (not flaring), my goal will be to try Paleo again and see how I do. I did notice in my food journal a few things that are triggers that I NEED to stay away from - 1 being coffee- so hard to do! I guess I gave up on a second opinion because it seemed like the Drs kinda go through the same "check list" of things....so I do have a Colonoscopy scheduled in 2 weeks - I guess we'll see what he says....

Happy for you that you are in remission after SO long! Congrats! =)

Posted 7/6/2012 1:54 AM (GMT 0)
IBS is not a disease, it's a syndrome. Many people here who have a diagnosed inflammatory bowel disease also suffer from disordered digestion, and that can be unpleasant. Many like to call it IBS. I just call it unpleasant and regrettable, but it's definitely linked to our illness.

There is no "treatment" for IBS because it's not an illness. Some people get relief from their symptoms by modifying their diet (I went gluten free and I watch lactose pretty carefully). Others use antispasmodics to relieve some of the cramping. There are many more ways to help manage this.

Remicade is a strong drug that affects the way the immune system works. If it works for you, perhaps you can achieve a complete remission and never have any ill effects from eating anything. You can never tell how all that is going to play out.

When Lialda was working for you, I wonder if it would have continued to work for you if you'd used a mesalamine enema in addition to the oral mesalamine. It seems like most people with UC really benefit from rectal meds. Maybe that's something to consider instead of, or in addition to, the cortisone enemas and the imuran.
Posted 7/6/2012 11:48 AM (GMT 0)
I have Uc, IBS and Diverticulosis. At first I was very confused as to why I would still have D and cramping when hitting remission than I had my routine scope. I was clear of the Uc but I was still having issues so my GI thinks I have IBS. I increased my fiber by taking supplements and it has helped. My bm's are more regular and as long as I keep up with the fiber than my cramping stays down to a dull roar.

BUT I couldn't stay in remission with my Uc and all the other meds weren't working so now I'm on Remicade, which has been a wonder drug for me!
Posted 7/6/2012 3:37 PM (GMT 0)
Pretty sure I have both. I have been diagnosed PAN-colitis, however the fast reaction I have to food both good and bad seems like IBS.

If the IBS flares up an IBD flare is sure to follow so I watch things carefully, recently it got pretty bad until I pulled the potassium gluconate out - it was causing all the misery.
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