I don’t know how it happened, and maybe the origins are lost to the sands of time, but someone somewhere decided that a colectomy was a cure for ulcerative colitis. This idea made it into books and pamphlets for patients, and now is taken as canon by inflammatory bowel disease (IBD) advocacy groups. Recently, however, there’s been some pushback on this idea from patient advocates.
What Does This Word Mean, “Cure?”
Personally, I have never felt that “cure” was the correct word to use for the removal of the colon. For people with ulcerative colitis, removing the colon may signal the end of some symptoms, including inflammation, fever, diarrhea, and pain. Without a colon, there are several options available for the solution to the question of “how does one poop?” The most popular one is a j-pouch, whereby a pouch shaped like a “j” is created from the terminal ileum, and sewn onto the rectum.
The j-pouch, in 2 steps, is the surgery that I had. For me, it has been the best possible outcome that I could ever have imagined. Now, there are still plenty of issues, but I can “hold it,” I can eat popcorn and salads (although probably not in succession), and the pain and fevers have stopped.
So, Then, Who Could Argue With “Cure?”
The first people that are caught by the non-cure of colectomy surgery for ulcerative colitis are those who actually have Crohn’s disease. What’s that I say? Yes, it’s still possible for people to be misdiagnosed with ulcerative colitis when they actually have Crohn’s disease. Eventually, the Crohn’s disease comes back, the symptoms rear their heads, and the patient may or may not lose their j-pouch.
Some people with j-pouches don’t have the happily ever after outcome that I do. They develop pouchitis, which is a poorly-understood condition of the pouch that causes fever and diarrhea. Treatment includes antibiotics, but the condition can be chronic in some people, and they lose their pouch. The Mayo Clinic dismisses this poor outcome almost out of hand:
“In most cases, pouchitis can be treated with antibiotics. When pouchitis doesn’t respond to treatment, the pouch may be removed and an ileostomy constructed.” – Mayo Clinic
Other patients develop myriad complications, female patients may find themselves battling infertility, and some pouches just never work quite right and their owners wind up unhappy with their quality of life. Failure of j-pouches is under 10%, which is actually very good, and those are odds I would take, but this statistic doesn’t help you much if you are in that failure group.
Hold Up — Isn’t IBD An Autoimmune Disease?
We now recognize IBD as not just a bathroom disease, but actually an autoimmune condition. What this means is that IBD involves the immune system, which has far-reaching implications. Auto-immune conditions tend to travel in packs, and if you have one you might have more.
So, short of removing the immune system, it does seem as though one can’t exactly get rid of ulcerative colitis so easily. Removing the colon is only removing the (or possibly just one) manifestation of a malfunctioning immune system. Even in 1999 when I had j-pouch surgery I was told that I might still develop complications common to people with ulcerative colitis.
Why Do We, Then, Call Colectomy A “Cure?’
I don’t know. I absolutely don’t. Before we knew that IBD was an auto-immune disease, one could argue that it just made sense. Remove the colon, and all the bleeding and the diarrhea stops. Done and done.
But now we know better. Not only do we know about auto-immune conditions, but we also know so much more about IBD. We know that it’s not a cut-and-dry system of classifying patients into two buckets (ulcerative colitis and Crohn’s disease). There is a spectrum of IBD, caused by what we now know to be more than 100 genes, plus some as-yet-unidentified environmental trigger(s).
I won’t argue that evicting my colon was absolutely the best decision for me. I didn’t have much of a choice, actually, but it worked out better than I could have imagined. I know that this is not the case for everyone, although I know several folks with j-pouches who are doing very well. But I also know people for whom the j-pouch has been an uphill battle from the start. Until we can determine why some people do well with a j-pouch and why others do not (again, here’s that idea of a poorly-understood disease spectrum), we will have that percentage of patients whose j-pouches fail.
And I’ve only touched on j-pouches here, because it’s become the standard surgery for ulcerative colitis. Some people have an ileostomy (and more than one because of a fear of a j-pouch failure), and I don’t see how that’s a “cure,” either.
What Do We Do About This?
We keep talking about it. We keep up the pressure, letting those that work in developing IBD information and policy know that we disagree with a colectomy being called a “cure” for IBD. We don’t have a cure.
And when people ask me “do you have Crohn’s disease or ulcerative colitis?” I still don’t know what to say. “Yeah, I sort of had ulcerative colitis but then I had a colectomy, and now I poop like you, only more times a day, but I get dehydrated all the time and I can’t eat anything spicier than mild salsa, and even that is a bad idea sometimes….” That’s just too much to say. So, I’ve decided, I’m going to say that I still have ulcerative colitis. I might as well.
It’s not like anyone has cured me of it, right?