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Ulcerative Colitis
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Posted 2/5/2010 3:15 AM (GMT 0)
Hello everyone,

I have been viewing this forum for a while but this is the first time I've actually written anything! I was diagnosed 5 years ago and have tried a few of the common meds - salofalk and pentasa (both of which I had a horrible reaction to), and I'm on imuran and prednisone right now. However, I'm becoming a bit scared because my doctor has told me she thinks I really need to start considering Remicade because in the 5 yrs I've had UC, I haven't ever been in remission for more than a couple months at a time. Obviously I'm worried about switching to Remicade because in my mind that's just one step closer to surgery which TERRIFIES me!!

So lately, even though I'm still on prednisone, I've been feeling a lot sicker - going to the bathroom about 6 - 8 times a day so I've bumped up my VSL-3 to 3 or 4 packets a day and I've increased my prednisone but is there anything else that anybody takes (like Turmeric) that they find helps them with their colitis?? (I know everyone's different and what helps you may not help me but I'm desperate for some ideas that I can research so I can help myself as much as possible!!)

Thanks!
Posted 2/5/2010 5:35 AM (GMT 0)
My suggestion would be to try psyllium seed powder, zinc supplement and Curamin (blend of curcumin and boswellia). As you can see from my signature my daughter takes all of these. I would also suggest rowasa enemas and suppositories, but I see you cannot tolerate mesalamine. Lialda, along with enemas and suppositories have worked well for my daughter, but the pysllium seed powder (combined with VSL#3DS and applesauce) and zinc supplements really helped also. I am not sure how much the Curamin has helped, but we will try just about anything with some science (studies) behind it. We get the organic psyllium seed powder from a website called frontier coop and it seems to be good quality. We wish you the best and will keep you in our prayers.

UCPop
Posted 2/5/2010 6:35 AM (GMT 0)
2 important things you should add (and take indefinitely) are fibre supplements and a good probiotic, daily of course, flaring or not.

:)
Posted 2/5/2010 6:07 PM (GMT 0)
Yikes, your situation sounds almost exactly the same as mine (bad reaction to Pentasa, currently taking Imuran and Prednisone). I am praying the Imuran/Allopurinol mix sustains my UC, or like you I know there are only a couple more things to try before surgery becomes the next option...My GI has already mentioned that we should start talking about surgery...

I just want my life back. If the surgery is what it takes to not have all these pills, and blood tests and feeling sore and tired all the time, then I am open to that. Like you it scares me, can't imagine missing that much work, and it sounds like most people wind up having 2-3 surgeries, not just one and done.. But reading all these people who have been fighting (sometimes unsuccessfully ) for YEARS makes me wonder if accepting the final option earlier might be the right path.

I know it is apples to oranges to some extent, but ask anyone whow has had a knee or hip replacement if they regret anything...they will almost always say: "I just wish I had done it sooner". I really don't want to let this disease ruin my quality of life (especially while my children are still young) for YEARS.

Post Edited (oldplayer) : 2/5/2010 11:35:38 AM (GMT-7)

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