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Ileo-Anal Pouch wasn't quite the cure I'd hoped for.

In 1995 - after a diagnosis of Ulcerative Colitis in '93 that was out of control non-stop I had an ileo-anal pouch surgery done - with a total colectomy.  I was told if I got rid of my diseased large bowel - I would be 'cured'.  No colon, no colitis - sounded like the only thing left to do.  Now I have been diagnosed with Crohn's which manifested itself out of the colitis somehow.  After trying every drug going I have now just been prescribed and approved for Remicade.  I am feeling so hopeful that this will be my 'miracle cure' - - I have felt so unwell for so long.  My fear though is I know of no one who is on Remicade in my situation.  Everyone seems to have a large bowel still and the five people I actually know on Remicade can't say enough good about it - - but they still have all their 'parts'.  Any one out there in my situation??  Are you on Remicade AFTER having a total colectomy?  Did it work and are you feeling better because of the Remicade??
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Avatar universal
Thanks Liz for your insight and comments - just hearing that you haven't felt so good in years and are putting on weight and eating well is some light at the end of my tunnel.  I have never been thinner in my life and I miss 'enjoying' eating.  Now it is something I do to sustain me and feel much better when I just forgo it altogether - though I realize starving is not a healthy option either!  I just received some more paperwork and after a bit more shuffling and signing - I hope to have my first infusion sometime late next week.  Yay!
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Avatar universal
Sorry you haven't had any response to your post yet. I can only offer slight experience - I had a right hemicolectomy in Mar 2009, resection of last part of the small intestine, the ileo-=caecal valve and first part of the colon (I have had Crohn's for 40 yrs and this was my first resection). The Crohn's flared with a vengeance in July 09, so I was started on Remicade and intially told I would only have 4 infusions: week 0, then weeks 2, 4 and 6. However, my symptoms (severe diarrhea, weight loss, pain etc.) did not improve and I am now on 8 weekly infusions for life.  I haven't felt so good in years and thankfully now putting on weight and eating well, although a low residue diet.

If the recent diagnosis of Crohn's is in your small intestine, this may be the reason for the Remicade. It may be that you had Crohn's Colitis all along - I would ask your gastro.

take care,
Liz.
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