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Surgical "cure" for colitis

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Ulcerative Colitis
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Posted 2/7/2011 5:48 PM (GMT 0)
Slightly off topic, but I find it interesting that removal of the colon is often considered a "cure". Isn't that like fixing a broken arm by chopping off your arm? The higher incidence of pouchitis suggests that it's not really a cure anyway and that the disease just moves elsewhere. I'm very happy that I held off after seeing a surgeon at Stanford, because now I've been in remission for about 6 of the last 7 years. Surgery can't be undone either, at least not yet.
Posted 2/7/2011 5:54 PM (GMT 0)
For most jpouchers, pouchitis is an occasional incident. I've had my jpouch for 10 years and have had only one bout and that was in year 7.

For me, surgery was a cure. The disease has not moved elsewhere and I take no meds and don't live by a limited diet. I feel blessed that surgery worked in my favor. And I'm glad that surgery can't be undone, I wouldn't want my colon or rectum back...ever!

Hopefully your remission will continue to be long!

Sue
Posted 2/7/2011 6:00 PM (GMT 0)
Thank goodness you have had such a long remission.  For some of us, that hasn't happened.  The reason I had surgery was that the drugs stopped working and they were affecting my liver.  I am glad you had a choice, some of us don't.  No, it's not like cutting off your arm.  The statistics say that 95% of people are happy that they had the surgery.  This was after one year.  If the surgery was that bad and caused so many problems, the satisfaction rate wouldn't be so high.

Also, other manifestations (i.e., arthritis) have gone away.  I am so thankful. 

Hopefully you will never be in the position that you have to have your colon removed.

Posted 2/7/2011 6:03 PM (GMT 0)
Congratulations on the success stories. I'm just hesitant to do something so permanent (and obviously not while in remission).

Along the lines of this thread (https://www.healingwell.com/community/default.aspx?f=17&m=1772970), isn't UC a problem with the immune system that just happens to manifest itself in the colon? That's supported by incidences of comorbidities elsewhere in the bodies of some UC sufferers, though I haven't had any non-colon symptoms myself. If you had any such symptoms before surgery, did they go away after?
Posted 2/7/2011 7:02 PM (GMT 0)
how can you compare UC to a broken arm? i feel that this post is very insensitive to those who have had to have surgery because they weren't as lucky as you at finding remission. for many people who've had to have surgery there really was no other option. my child tried many therapies for UC and none worked. surgery has given him his life back. and as far as UC being an immune issue, that is up for debate. for some it may be an immune issue. for others it may be a bacterial imbalance or over sensitivity to fungal or nutritional agents. many other factors remain a mystery. i would suggest that you don't have surgery, since clearly you don't need it. and as far as i've read pouchitis comes from not emptying completely and the leftover stool causing irritation, but maybe i'm wrong.
Posted 2/7/2011 7:21 PM (GMT 0)
Pouchitis isn't thought to share the same pathophysiology of ulcerative colitis and probably shouldn't be thought of as "the disease moving elsewhere". Rather, it is likely the result of fecal matter causing distress and irritation to a region of the digestive tract that does not normally function as a reservoir. For patients who don't respond to medical therapy and who lead lives of severely diminished quality, surgery represents a viable solution. It isn't without consequences obviously, and they should be weighed against the improvements an individual is likely to experience.

As for UC being a systemic disorder of the immune system, the available evidence points in the opposite direction. The immune response in UC patients appears to originate in the colon and in some cases, a chronic state of local inflammation can lead to extra-intestinal manifestations due to increased immune-system reactivity. If the disease can be controlled chemically, these manifestations often subside or decrease in severity. If a colectomy is conducted, any extra-intestinal manifestations a patient was experiencing almost always disappear.

Post Edited (Delarge) : 2/7/2011 12:35:34 PM (GMT-7)

Posted 2/7/2011 7:42 PM (GMT 0)
Sounds like your UC is a milder case if you have been in remission that long. I would never recommend surgery for anyone whose UC wasn't life-altering. But it definitely was for me and many others that's why I'm thankful I had it and now have the j-pouch. I didn't have much of a life at all for several years and I didn't realize how bad my life was with UC until after I said goodbye to the colon and could once again function. I have to say, I don't miss watching my face balloon from prednisone, having an IV stuck in me for my Remicade or giving myself nightly enemas. I'm down from 15 pills a day to zero. I really don't miss that panicky feeling I would get when I would be in the middle of a store and get that "urge." Surgery is not for everyone. I hope your remission continues.

Posted 2/7/2011 7:46 PM (GMT 0)
I apologize if my original post came across the wrong way. Having dealt with this for 10 years myself, I wouldn't make light of another UC sufferer's situation. I'm happy that many have found relief in surgery. I was just questioning the "cure" aspect with an apparently imperfect analogy.
Posted 2/7/2011 11:17 PM (GMT 0)
Its not a "cure" its the only cure. Its not like cutting off an arm to fix a broken arm its like cutting off an arm to fix an arm eaten up with gangrene or removing a breast filled with cancer. But for some reason noone thinks twice when people have thatdone. But I digress. Of course surgery comes with its on problems but once the colon is gone the disease is gone and the dangerous meds are gone. And that's the important thing
Posted 2/8/2011 12:24 AM (GMT 0)
Summerstorm said exactly what I was about to say. My son has been cured, exactly like someone who is about to have their appendix burst (and possibly kill them) is cured by having it removed.
Posted 2/8/2011 1:24 AM (GMT 0)

Chris'sColon said...
my child tried many therapies for UC and none worked. surgery has given him his life back. and as far as UC being an immune issue, that is up for debate.

I understand what the OP was trying to say, I think anyone contemplating this disease ends up with their mind ablaze from the complexity and the possiblities.

I am often grateful that I am not in your shoes. This is hard enough to figure out with me in the drivers seat collecting all the data. How on earth do you that with a small child that can barely report what is happening within their own body. I am often grateful that I have this and not my daughter.
Posted 2/8/2011 2:43 PM (GMT 0)
aguywithuc, i am greatful for all the fantastic people on this forum describing in detail what they (and my child) were experiencing. and i have a strong background in research, which really doesn't make it any less confusing. there are times i still wonder what caused his problems and what else we could have tried to alleviate the symptoms, but no matter how long or complete the remission we could have found (which we didn't) eventually UC would come back and bite him in the butt, pun intended. at least now i know that he's enjoying his day at school and not spending half the day sitting in the bathroom in pain, and that i'm not poisoning him with crazy medications. surgery is not pretty, but it is definitely a cure. i hope they find a non-surgical cure or preventative in the near future for the rest of ya'll, but we had to do what we had to do.
Posted 2/8/2011 3:05 PM (GMT 0)
While I agree that the medical profession, in its ignorance, has sort of copped out on UC (see my signature below), just as they have with many auto-immune or malfunctioning immune system disorders - it is flippant to imply that surgery is not a good choice for many- not everyone's UC is so mild and short-lived as yours.  I had an almost ten year med and symptom free remission once that didn't involve any sort of alternative therapies- it just happened spontaneously.  But now for years and years everything under the sun fails to give me remission.  We only live once (well that's my view), so surgery, while not perfect, for most eliminates the UC and results in much greater quality of life than that with symptomatic UC and, eventually, just minor life style adjustments (poop when you pee). 

I would take slight issue with one point made by summerstorm and others that removing a UC colon is like removing a gangrene filled arm or whatever- the reality is that for most people with UC, a few days without their immune system attacking their organ and it would be largely healed.  the colon has tremendous regenerative capacity, and the problem isn;t with the organ but with the immune system obsessed with attacking self.  That is why, in UC pigs or other experimental animals, you can transplant a healthy colon into the UC body and the disease just reappears.  That's what's so infuriating about this disease- its not really the colon that is beserk, but the immune system once it somehow gets obsessed with bacteria or cells that in normal people are recognized as harmless.

I will probably throw in the towel rather soon since nothing is working for me- I reckon that even if a major breakthrough that worked on pretty much everybody was discovered tomorrow, it will be another 10-20 years after that before it is approved, truly available and covered by insurance- and by that time I will be nearing retirement so I don't have that sort of time to wait.  And it may be 20 years before that breakthrough even comes, i.e. 30-50 years before it's fully approved and covered by insurance.  But I wish you (James) a continued endless remission.

 

Posted 2/8/2011 3:15 PM (GMT 0)

Delarge said...
If a colectomy is conducted, any extra-intestinal manifestations a patient was experiencing almost always disappear.

I do know a couple of guys from Ankylosing spondylitis forum who got AS after their colon was removed. And if UC is bad, consider AS as it's twin brother.
Posted 2/8/2011 3:40 PM (GMT 0)
AS is not caused by having the colon removed; it's caused by prednisone use. Another reason to limit the use of this drug to control UC.

Sue
Posted 2/8/2011 3:49 PM (GMT 0)

suebear said...
AS is not caused by having the colon removed; it's caused by prednisone use. Another reason to limit the use of this drug to control UC.

Sue

You should update your information.
AS and UC are highly related as autoimmune diseases. If you have medical studies regarding prednisone as a cause for AS please provide them.
Posted 2/8/2011 4:06 PM (GMT 0)
Oops! Mea Culpa. I was wrong, was thinking of Avascular Necrosis which is directly related to prednisone use.

Yes, it's true, those with UC are more likely to get AS than the general public.

Sue
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