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Hi Ant,
Am I correct in assuming that you are still off of the Entocort? How long has it been now and how is it going? I am keeping everything crossed......
Also, I was interested to read about your Oxfam benefit. I hope it was successful beyond your wildest imagination. It's a wonderful charity, IMHO.
Love,
Polly
P.S. Thanks for asking about my flare in another post.......it is getting better, but slowly. The disease is all about patience, isn't it?
Paging Ant!
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Paging Ant!
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
Dear Rich
Here is what I posted just before going off entocort.
Here is what I posted just before going off entocort.
That summed about the status then, and I as say I am now 18 days off and still ok..... Best antTo recap: Chronic D started in July 2008 in India. (In retrospect I had some tell-tale signs for many years - reflux issues, bouts of non-chronic D and tummy aches, balance issues, fistula in my behind; and some possible contributing causes - high use of antibiotics and NSAIDs as well as 2 celiac predisposing genes).
After Dx LC in November 2008 went on Pepto Bismol (PB) for 8 weeks with some success, but when I started to taper off chronic D returned. Kept on trying to control with PB on and off until June 2009 but could not get into remission for any length of time.
So then went onto Entocort three pills a day from the end of June 2009. Discovered this wonderful PP board and started a GF, DF, SF, other legume and nightshade free diet. Also discovered (thanks to hints from the PP) that I had low vitamin and mineral levels and osteoporosis.
D and bloating gradually improved to the point where I tapered down to two Entocort a day in January 2010, one a day in March and one every other day in mid-June.
Since tapering to that level (i.e. in the last two months) for most days I have had one or two bowl movements, of which about 70% where firm or firmish, 20% soft and loose but not D, and 10% D. During these two months I have had five days with three or four bowl movements and two flares. One flare (12 days after tapering to one every other day) lasted only three days and the second fare (51 days after tapering down to one every other day) lasted 6 days. The second one has - I hope - just ended. Each time I had a flare I added PB to my medication for a couple of days and for the second flare I increased the Entcort dosage back up to one a day for one day.
Not sure what caused the flares and I am hoping that I can handle the tapering down. Looking at my food diary it could be that I was too ambitious with fiber: I was introducing some raw fruit and especially banana - two a day. Of course I could have been accidentally 'glutened', 'caseined' or 'soyed'. My plan was that once I got back to Hong Kong I would try and come off entcort completely, but now I am thinking I should take my own advice and "softly, softly", catch this very tricky, very very naughty monkey called MC!