I heard that after jpouch surgery to remove colon that was completely damaged by Colitis that I still have Colitis but the damaged organ is gone. Is this true, the surgery removes the problem but not the cause.
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There s a chance that some colitis might remain near the rectum, but for all practical purposes, no large intestine, no colitis.
My GI does not tell people it's a "cure," because the longer people are living with pouches, the more issues are cropping up. Some are very likely related to IBD. It doesn't mean you can't have a good life with a pouch, but be aware it's creation is not 100% cure. He counsels all who decide on the surgery of this.
I had 21 years with nearly zero issues. Twenty-two years in plus, things aren't quite the same. And yes, my GI said that colon out does not = removal of genetics/predisposition for IBD. He says that mucosa of J pouches change to become more colonic in type over time; this could indeed be a trigger/factor in new IBD symptoms down the line.
When I was considering a j pouch we discussed in length that the uc I had may crop up in the cuff left behind to attach the Pouch to. I was told to really not even try the Pouch because my uc was only manifesting itself in the first three to five inches of my colon and I would most likely get it in the cuff.
But I forged ahead anyways. Never did get the uc in the cuff. Just ended up with a pouch that didn't work. They say 20 percent don't for no reason. I was one.
But yes once you have it you have it. I believe. It's an autoimmune disease as we all know. And we will have it in some form or another.
I just had my pouch removed. Almost two weeks ago. Besides the pain from healing I notice a difference already. Although I will have to bag it the rest of my life I already feel better in the past two weeks than I did in the past two plus years of fighting to keep the Pouch and figure it out. I am not completely happy with it but I see it as only getting better now. Just have to get rid or by the pain and get used to the bag.
Richard.
But I forged ahead anyways. Never did get the uc in the cuff. Just ended up with a pouch that didn't work. They say 20 percent don't for no reason. I was one.
But yes once you have it you have it. I believe. It's an autoimmune disease as we all know. And we will have it in some form or another.
I just had my pouch removed. Almost two weeks ago. Besides the pain from healing I notice a difference already. Although I will have to bag it the rest of my life I already feel better in the past two weeks than I did in the past two plus years of fighting to keep the Pouch and figure it out. I am not completely happy with it but I see it as only getting better now. Just have to get rid or by the pain and get used to the bag.
Richard.
A j-pouch should not be considered a "cure" and if any surgeon tells you this, it is not a correct answer. Basically, you still have ulcerative colitis/IBD even if your colon is removed. UC can recur in the remaining part of the rectum (the rectal cuff) no matter how small it is, and there are many in the medical profession who also believe that pouchitis is simply another inflammatory process and as such, just another manifestation of IBD. You may also still experience extraintestinal manifestations of UC (such as eye and skin problems, mouth ulcers, etc) though these generally tend to be much less prominent when the colon is removed and you're not in full flare.
Basically, removing the diseased colon eliminates the worst of the symptoms and in turn gives you an improved quality of life. Most people who opt for a j-pouch do very well; there is generally about an 85% satisfaction rate in successful pouches (though the numbers vary depending on what study you read), and even with the post-op issues, most patients report a greatly improved quality of life over having full blown UC.
The truth, though, is that you will never be back to your pre-UC days. I am very happy with my pouch, but that is not to say I haven't had issues myself. However, I will tell you that I have learned, after having the pouch for over 7.5 years, that I tend to do better when I'm more active--and I am a very active person. I run, ride horses, and do yoga several times weekly. Also, probiotics, turmeric, and vitamin D appear to have helped stabilize my pouch function.
It's true that the surgery eliminates the problem (diseased colon which could become cancerous) and not the cause (autoimmune disorder). The autoimmune disorder remains and may manifest in other ways and other illnesses - or not! If it doesn't, you could view yourself as being cured, I suppose. But in many cases, people with J Pouches develop Crohn's or Crohn's like symptoms and/or pouchitis, rheumatoid arthritis, anklyosing spondylitis, and other disorders that are caused by an autoimmune defect which also caused the UC. Whether that happens will not be known until the future. If you had a crystal ball that told the future you would know, but you don't, so you will not know until some time after surgery. So the issue really comes down to the present and not the future, although keeping a diseased colon can lead to bad things down the road, like colon cancer or perforated colon and toxic megacolon. Anyway, the analysis should be to weigh the risk of those things happening in the foreseeable future. When I had surgery, I delayed quite a bit for various reasons, and the result was when they took the colon out it was close to perforating (it actually dissolved in my surgeon's hands when he took it out), so I was pretty close to toxic megacolon city, a place you really don't want to visit.
Originally Posted by JenJen:
Removal of the colon (total colectomy) removes the symptom, colitis (inflammation of the colon.) Those with a permanent ileostomy and no remaining colon or cuff, can no longer have colitis. Those who have a j pouch, can have similar inflammation in the several inches of remaining colon used as a rectal cuff which is commonly called cuffitis (inflammation of the cuff.) Because total colectomy does not eliminate the cause of the inflammation, which is an autoimmune (AI) reaction of unknown origin, you may still have related problems if the disease continues the inflammation process in other organs or body systems as well. The medical community will then usually change the name of your condition to reflect where the new inflammation is occurring.
The statistic most often quoted is that there is a 20% chance of further complications after colon removal. If you do have other autoimmune problems after colon removal, they won't medically be considered "colitis" because you no longer have a colon. (Although with cuffitis, they may and the treatment may be similar to colitis.) So understandably, some patients feel mislead...their doctor says they'll have "no more colitis" and be "cured" but the patient doesn't feel cured because they are still "sick." Many patients with complications (me) go on to experience the inflammation they thought was cured in a new area: cuffitis, pouchitis, arthritis, psoriasis, lupus, and the list goes on unfortunately. Personal experience and extensive study has lead me to the understanding that though many patients seem to have similar symptoms, we have different disease triggers and certainly very different genes, so we have many different experiences post removal. For more info, read anything written by Dr. Bo Chen of the Cleveland Clinic Foundation. From what I can tell, he and his associates at CCF are the "tip of the spear" in our understanding of and response to this disease right now.