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And life continues...

B

B-rad

and life continues...

previous post I was feeling that remicade was failing for me, having pain, watery stools and blood in the am whenever something passed through my distal colon. saw the specialist, he put me on prednisone (surprise surprise) to clear the flare, and then said wait and see how the next remicade infusion went. I had it about two weeks ago now, and I am off the prednisone, which incidentally, didn't seem to help...maybe a little less blood, and the remicade maybe worked a little, but I am symptomatic again. I see the specialist again on the 24th, last time I saw him he said he would have to scope me before he'd be willing to change anything with the remicade...which had been working quite well up until may, I guess I was on it a year and a half. Anyway, that's where I'm at, mildly depressed by the whole thing, and I've started thinking about life without a colon and how good/bad that would be?? Is it fair for him to make me wait for a scope before increasing the remicade? I mean, we are talking three months (at best) before they will get me in for a scope, unless of course I start losing life threatening amounts of blood and end up in the ER. Which is exactly how I ended up on remicade to begin with. And it seems to me that if surgery is the answer, wouldn't it be best to have it while I'm relatively healthy and have a decent body weight?? sorry for the rant. any insights would be appreciated.

brad
 
vonfunk

vonfunk

Bourbon Bandito
Location
Toronto,
So a couple things:
Remicade - I was briefly on it, I was in a horrific flare at the time. The first dose kick started me into "remission". I was still on pred at the time but it wasn't doing much on its own. It took a few weeks for it to work. I became allergic to it real quick, but it helped.

Surgery - I was in the same boat. I chose to have my colon removed. I had failed all of the available meds, and while pred was keeping things under control it is not a long term plan. For me it was either get diabetes and osteoporosis from the pred and then develop colon cancer, or just get the damn thing yanked. It's easier to heal when you are younger.

Scope - My GI did a scope a couple months prior to me starting remicade, and wanted anther one a few months after I started it so that he could check on the progress.
 
vonfunk

vonfunk

Bourbon Bandito
Location
Toronto,
Things are going fairly well, no major issues.
I had a blockage in the hospital caused by the muscle they fed the stoma through and some minor complications with the staples in my belly button causing them to be in the incision so the wound has been very slow to heal.

But for the most part okay, apparently I'm recovering faster than most. The bag is easy to adapt to. the hardest part is not eating past 7pm, but that is a personal choice.
 
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