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Why doesn't anyone talk about this as an option?

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Ulcerative Colitis
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Posted 11/10/2013 2:12 PM (GMT -5)
Has anyone ever done this for their colon disease (limited to colon only) that doesn't respond to any medicines (my surgeon and I discussed it): a temporary disconnect of the colon and the small intestine? This way you don't have to remove the colon, keep taking medicines, get a temporary bag so no stool passes through, giving the colon time to rest and heal? The doctor said it can work but the disease is likely to come back when reconnecting but the hope is that you can wait if you need to for better medicines to come and still be able to go on in life without losing your colon.
Posted 11/10/2013 2:17 PM (GMT -5)
blacksteeda has had his colon partially disconnected because of resection in his sigmoid. There are still issues he's having because of the disconnect specifically.

I don't see it as an option since you'll still have UC....I'd rather have my colon out move on from there.

q
Posted 11/10/2013 6:07 PM (GMT -5)
You have to wonder if the that elio-Cecil valve whatever between small/large gets stuck 'open'. I tried the 'massage' technique last time and it simply got worse.
Posted 11/10/2013 6:23 PM (GMT -5)
UC is an autoimmune disease where your immune system has been permanently reprogrammed to attack either your colon or something in your colon, causing inflammation and UC. This is a chronic lifelong condition, with periods of flares and periods of remission. It is not a disease where your colon has been damaged for some unknown reason and all you have to do is heal it and then you will be magically fine after it heals. You have to take meds to get your colon healed, so that your symptoms will disappear but you have to continually take meds or use some other kind of maintenance therapy continually forever to make sure the colon stays healed because your immune system will always be on the attack, forever. You cannot simply just heal your colon and you're cured. The disease does not work that way.
Posted 11/10/2013 6:23 PM (GMT -5)
Add to that, there's no assurance that resting the colon by bypassing it will lead to any degree whatsoever of healing. The irritation and ulcerations are caused by inflammation, not by irritation from food. So there you'd have two major surgeries probably with no positive result.
Posted 11/10/2013 7:13 PM (GMT -5)
Temporary ostomies are sometimes used in Crohn's to divert the stool from an area while it heals; a newly-created anastomosis, perianal disease, etc. So diversion does work in some cases, otherwise there would be no point in doing it.

But the colon is relatively massive and diverting the stool doesn't seem to heal it. In fact, stool diversion can create a form of inflammation in its own right known as diversion colitis, and distinct from IBD (though usually not as severe).

@Gary - The topic creator made it quite plain it wouldn't be a cure; you seem to be arguing with them over something they never even said. The concept of 'bowel rest' is not a new one; it has been used as a treatment for Crohn's for a long time. It works best for small bowel disease and it 'works' in the sense a course of steroids works (but without the toxic side-effects). But unfortunately bowel rest doesn't seem to induce even a temporary remission in severe UC.

Another link which nobody will read.

www.uptodate.com/contents/management-of-severe-ulcerative-colitis/abstract/5,6
Posted 11/10/2013 7:24 PM (GMT -5)
Geez Gary thanks for the optimistic post. Just because the medical profession claims there is no clinical cure doesn't mean that many people haven't found other ways of healing their colon and yes maybe even curing their disease.
Posted 11/10/2013 7:36 PM (GMT -5)
Why do I even waste my energy posting? Why?

I need to leave HW; even playing videogames all day must surely be a more fruitful and productive activity than posting posts which nobody's interested in and nobody reads.
Posted 11/10/2013 7:44 PM (GMT -5)
Actually I did read your post and it was very informative. I was simply responding to one of the previous posts.
Posted 11/10/2013 8:43 PM (GMT -5)
Sorry Ed, Didn't realize that you only wanted optimistic posts. I am a straight shooter. I'm not going to blow sunshine up people's butts just to make them feel better. I would rather hear the truth myself than to be mislead with false hopes. Your own doctor said, "it can work but the disease is likely to come back". Is that really any different than what I said? I'm not sure what he meant by that exactly because if the disease is likely to come back then obviously it didn't work. I realize the medical profession has so far failed many people with autoimmune diseases but I have yet to see anyone who healed their colons, quit all treatments because their colon was healed, and stayed in remission.
Posted 11/10/2013 9:21 PM (GMT -5)
" I have yet to see anyone who healed their colons, quit all treatments because their colon was healed, and stayed in remission."


gary forgets to look sometimes -
Posted 11/10/2013 9:32 PM (GMT -5)
Theoretically you could go on TPN for bowel rest...no need for an ileostomy. I don't know what doctor would approve that though because the end result is too iffy.
Posted 11/10/2013 9:34 PM (GMT -5)

Edbar said...
Actually I did read your post and it was very informative. I was simply responding to one of the previous posts.

I feel a bit embarrassed now, but better after reading that. Thanks.

Now I'll try to forget my last post, so I can get over the embarrassment and just feel better... >.>
Posted 11/10/2013 9:37 PM (GMT -5)

ByeByeUC said...
Theoretically you could go on TPN for bowel rest...no need for an ileostomy. I don't know what doctor would approve that though because the end result is too iffy.

I posted a link to two studies (abstracts only) about UC and TPN...

In 3 words: TPN doesn't work. Not for UC. Sorry, that was 6 words.
Posted 11/10/2013 10:28 PM (GMT -5)
NCOT, I read it too. Relax, you are appreciated. This crud just gets the better of us sometimes. We all need bowel rest and brain rest.
Posted 11/10/2013 10:33 PM (GMT -5)
"...but the hope is that you can wait if you need to for better medicines to come and still be able to go on in life without losing your colon."
This is the question proposed here. In other words, could you preserve your colon inside your body until a cure or more effective treatments came along.
It is an interesting theory but I can't see why anyone would want to do that. You'd go through life with a bag desperate for that cure to come along so you could get rid of said bag. You'd never be at peace.
Posted 11/10/2013 10:41 PM (GMT -5)
so basically it is just bowel rest for the colon? that doesn't even work for most cases of UC though... can't see how this would be a very effective treatment of just having no food passing through. i've done that tons of times at home and in the hospital with nothing by mouth. still was in constant pain and agony.

i feel like not taking medication while the small intestine and colon aren't attached would be pointless. wouldn't you want a healthy colon attached back afterwards?? the immune system could still attack the colon if it's in your body so immunosuppresants/biologics would still be necessary.

i don't know. maybe i just don't see any logic in this strategy.
Posted 11/10/2013 10:50 PM (GMT -5)
The strategy, although ridiculous, is not to rest the colon to give it a break and heal. The proposed strategy is to detach your colon to preserve it for when a cure or comes along, then reattach it and live with a colon again and cured of UC. Ridiculous.
Posted 11/10/2013 11:07 PM (GMT -5)
gonk, i'd rather just get the diseased thing out of my body if i'm gonna have a bag anyway!
Posted 11/10/2013 11:56 PM (GMT -5)
The strategy is not "ridiculous" - especially since the leading gi's think it will work. And the strategy is not just to hope of being cured. My medicines have worked for 90%of the colon but not for the rectum. Nothing has worked for the rectum. The hope is that by disconnecting, the last portion will heal as I will still take the medications while disconnecting. I know it is not the greatest option in the world but I don't have a lot of choices and do not want to lose my colon as I am very young.

NiceCupOfTea - you're link was interesting but a bowel rest, while similar, is still different from a disconnect because things are still going through the colon. In a disconnect, nothing is going through the colon, hopefully allowing it to heal as no irritation of bowel goes through and medicines can be continuously absorbed in the meantime.
Posted 11/11/2013 12:05 AM (GMT -5)
I guess it's an idea but it sounds like if you're going to go through all that, it may be better to go toward having a j-pouch, that way you would be able to live life without UC worries in the future. While I desire to keep my colon, I realize that having a bunch of surgeries is not appealing. If I went through a disconnect and having a bag, I'd rather be without a colon and not have UC anymore. I can't imagine going through all that and ending up back at square one in a year or two, maybe even less (maybe more if you're lucky). I completely understand wanting to keep your colon, i think we all want that. Being young in my opinion is better for getting a pouch though, the younger people seem to go less times per day and they heal faster. It's all about doing what you want and what you're comfortable with. If this is an option that multiple reputable surgeons and GIs offered, i guess it's something to consider but I've never heard of it before and i can't imagine insurance covering it considering you could be half way to a lifetime without UC and instead you might heal your rectum.
Posted 11/11/2013 2:48 AM (GMT -5)
Yeah well the other problem is they are not 100% sure i have UC. They always were until my last colonscopy when they found a couple of granulomas - now they say I am somewhere in the middle of UC and Crohn's. So, that also discourages me from doing the Jpouch. It sucks. =(
Posted 11/11/2013 7:17 AM (GMT -5)
Sorry if I offended you by calling this strategy ridiculous, but to me, it's absolutely ridiculous. Notsosicklygirl summed it up pretty well. I'll leave it at that.
Posted 11/11/2013 7:42 AM (GMT -5)
interesting idea - I just wonder how long before the colon would start to atrophy from lack of use - like any muscle, short term rest can be beneficial, but at some point, too much rest becomes detrimental - I dunno ?

i'm all over bowel rest, but more as in fasting/juicing/blended diet type of thing -
Posted 11/11/2013 8:28 AM (GMT -5)
"The strategy is not "ridiculous" - especially since the leading gi's think it will work. And the strategy is not just to hope of being cured. My medicines have worked for 90%of the colon but not for the rectum. Nothing has worked for the rectum. The hope is that by disconnecting, the last portion will heal as I will still take the medications while disconnecting. I know it is not the greatest option in the world but I don't have a lot of choices and do not want to lose my colon as I am very young."

So it sounds as if you'd already decided this was a good idea, and maybe just wanted kudos and encouragement? Okay, I can do that.

Go for it and best wishes!

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