Do you still have colitis after surgery?

pjayzMember

I had the surgery a number of years ago after trying all the drugs out there with no success. But after some complications in (and after) surgery, and a few years of getting back to "normal", I'm now doing great. But just a question of correctness.

Do I still have ulcerative colitis after j-pouch surgery? Or did I used to have ulcerative colitis until I had the surgery?

It's just, in my mind, I feel like saying I still have ulcerative colitis even though I don't have a colon is like saying I have a broken wrist still even though I cut my arm off. (I have my arm btw, it's just an analogy)

I know it sounds like a stupid question, or maybe this one falls under the stupid person category, but I've always wondered and it means something to me. Thank you.

3/1/131:28 AM

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Uc-DanielleMember

No if it was all in your Colon you are disease free! That's the way I understood it from my surgeon.

3/1/131:31 AM

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LionsPrideMember

It isn't a stupid question at all. You still have UC. UC is an autoimmune disease and your immune system hasn't changed - you've just removed what it doesn't like. If you could magically put some mucus membrane from your colon back in, you'd most likely be sick again in days.

It can be a hard concept to wrap your head around, but it's important to know. For example we can't register or donate bone marrow, before or after surgery, for this exact reason. We're also still prone to have problems with other autoimmune diseases like arthritis, eye issues, liver problems, etc. I usually say i have 'post operative UC' when i talk about it, because I agree with you that it doesn't feel right to say I have UC anymore - but i do.

Still, i'll take our version of 'cured' over flaring any day of the week.

3/1/133:03 AM

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mad hatterMember

You mentioned that as someone with Uc we can not donate bone marrow. Is this true? My cousin has cancer and I was going to volunteer as a potential donor if she needed and if Iwas a match??

3/1/137:36 AM

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liz11Member

you still have IBD. IBD is a systematic disease and just because your colon is out doesn't take away the whole disease. Its a very different scenario than a broken wrist. That is just a localized problem. IBD is systematic. sorry for the bad news.

3/1/1310:33 AM

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Jan DollarModerator, RN, retired

Yes, it is correct that colectomy cures the colitis, but as mentioned previously, you still have the same genetic make-up and autoimmune disease. You can still get some extra-intestinal manifestations, and some people find out that they never actually had UC, but it was Crohn's all along.

And yes, it is also true that a diagnosis of UC (and most autoimmune diseases) disqualifies you for bone marrow donation.
http://marrow.org/Join/Medical...stry.aspx#Autoimmune

But, you can donate blood.
http://www.redcrossblood.org/d...ility-criteria-topic

Jan

3/1/1311:34 AM

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SpookyMember

quote:
you still have IBD. IBD is a systematic disease and just because your colon is out doesn't take away the whole disease. Its a very different scenario than a broken wrist. That is just a localized problem. IBD is systematic. sorry for the bad news.

Unfortunately, this. Also, you can go on to develop cuffitis after surgery, which is just UC in the small, left over portion of rectum.

3/1/1311:44 AM

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