Failing all meds

susans53

Regular Member

Joined : Jun 2010

Posts : 318

Posted 12/10/2013 1:56 AM (GMT 0)

Although I don't officially have Crohns, I have a jpouch that is a mess.They r treating it like Crohns I have tried all meds, antibiotics, pentasa, rectal meds, remicade bad reaction plus I had melanoma in the past so they don't want me on another biologic. Endocort helped but that is not a long term solution as I already have osteoporosis and low adrenal hormones. Im on a lot of supplements! fish oil, vsl3 d, turmeric, etc. Taking out the pouch may not be the answer? What happens when there is nothing left? Does this disease then just kill you or do you live miserably ever after? I go to a big NYC teaching hospital so I do have top doctors but they just want me on endocort long term.

73monte

Veteran Member

Joined : Mar 2007

Posts : 2519

Posted 12/10/2013 9:46 AM (GMT 0)

I wish I could give you some good advice, but I don't have any experience with having a J-pouch.

It seems that you need to do whatever it takes to keep things under control. If that means long term Entocort, then I would stick with that option for now, until either newer meds come out that might be more suitable or another treatment plan makes more sense.

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