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Would a bag make me med free?

C

Chica

Hi, I'm a 39 year old dancer with Crohn's in the Sigmoid Colon (so far let's hope it's goes nowhere else). I first developed 2 deep anal abscesses in 06', after drainage surgery I then had 3 complicated fistulas operated on so had 3 ops on my rectum over 5 months. In 11' I experienced viral like symptoms & Uveitis & that whole year just didn't feel quite up to my usual fitness. Then in June 12' I had a 4th radical op on my rectum where the original abscess cavity had refilled & 10 weeks after the op I had a full on Crohn's flare with nausea, night sweats, arthritis so bad I couldn't walk & racing to the loo 15-20 times per day. It took all of this time & crap for me to finally be admitted into hospital & be diagnosed with Crohn's in the Sigmoid colon. I was put straight onto Infliximab / Remicade & was told I was one step away from a bag, no other meds & I have to say it has worked wonders & put me in remission. I'll never be quite what I was before but I cannot complain. However, I'm a bit of a naturalist & I hate the thought of being on meds, but the risks of not being on it are also bad, but I'm wondering if anyone out there has actually made the decision themselves to have a bag instead of meds? It sounds crazy but there was talk of a bag giving my colon a break etc & being a possible solution. I guess the other problem is it could spread to somewhere else leaving the bag a big thing to go through for nothing. Am I crazy to even consider this?
 
nogutsnoglory

nogutsnoglory

Moderator
It's very individual but everyone I know with a bag (in person, forum may be different) of any sort is still on maintenance medication.
 
G

gracifer

I second what nogutsnoglory said about it being very individual.
I currently have a temporary illeostomy after a resection which removed several fistula's, the diseased part of bowel; and my disease was based in the terminal ileum. Since the op in December I'm now in remission. Ever since I saw the surgeon in hospital he told me to stop taking meds.. That was 7 months ago and I haven't been on any medication since..I have my reversal coming up soon so I guess we'll see then how well it worked..
 
B

Boplanman

I chose to get a bag it helped tremendously put me in remission for 8 yrs but then the crohns came back. I'm on a few meds but life is way better with a bag
 
nogutsnoglory

nogutsnoglory

Moderator
No problem. I now have an ileostomy bag and an starting even more meds. With crohns the disease can attack from mouth to anus so you need maintenance meds to be safe. With UC though if all your colon and rectum are removed and you have a bag, you can probably get by without meds.
 
PsychoJane

PsychoJane

Moderator
I got my first surgery in 1999. With the bag and without med, I was in remission for 10 years. The disease came back at the terminal ileum 10 years (maybe was it longer than this but was not showing symptoms). Then I got a surgery to treat the active disease again (med does nothing but make me feel ok for a few months and then makes me sicker than I am without them) and since, I've been med free again and it's been almost a year and a half. It's pretty much a guess to take but you may end up paying much for it...
 
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