When I first saw how the Crohns Colitis Foundation of America was advocating that the removal of a persons’ large intestine was a cure for ulcerative colitis, I thought it was absurd but it didn’t really bother me too much. When I see advocates using the phrase “Crohns disease and IBD” instead of “Crohns disease and Ulcerative Colitis” I initially didn’t pay much attention to it. Or rather, I didn’t allow it to sink in.
But here is the way I see it. If you have strep throat, take antibiotics for ten days and you are cured. If you have appendicitis, the cure is an appendectomy. If your tonsils are causing you discomfort, having them removed would be a cure in my book.
So what is the difference? You do not need your appendix or your tonsils to perform basic bodily functions, or for any reason for that matter.
A person needs their large intestine!!!!! Will you die without it? Probably not. Will your life be dramatically altered once your colon is gone? In all likelihood, yes.
If removing the large intestine in a patient with ulcerative colitis was really the “cure,” why would anyone bother with medications like remicade, humira, asocol, lialda, prednisone, 6mp, etc? Those have nasty side effects that no one would ever want to put into their body if there was truly a cure. Why would anyone suffer through flare ups, being in and out of the hospital for years, thus having it impact them not only physically but emotionally and socially as well… if they could just have their colon removed, be cured and go about their merry way?
The answer is: because the removal of a vital organ, like a persons’ large intestine, comes with other issues that need to be carefully thought about.
The best case scenario in an ulcerative colitis patient is they have their colon removed and have an extremely successful Jpouch surgery. And even that has issues of its own. A person runs the risk of pouchitis (which can seem like having a flare up of UC in many ways), deals with frequent trips to the restroom, dehydration, blockages, etc. This best case scenario is also usually done in three steps/separate surgeries, where the patient needs to wear a temporary ileostomy bag for a number of months. Sometimes this surgery can be done in two steps, and rarely done in one nowadays due to the increased risk of complications. There are other types of pouches, although significantly rarer, like a Spouch, Wpouch, and Tpouch as well.
Does this sound like a “cure” to you? Does this sound like it is in the same world as an appendectomy, the cure for appendicitis?
I painted the best case scenario and believe me when I tell you, most people who have their large intestines removed are not that lucky! When I went in to have my colon removed, I was under the impression that I would have my diseased organ removed, wake up with a Jpouch, and have no idea anything was ever missing. I thought that I would just carry on about my business. I actually wondered why there were doctors for this disease and not just surgeons. It made me wonder why I went through so much beforehand; why I was ever put on something like prednisone and all the terribleness that that caused me at such a young age. I wondered why my parents and doctors allowed me to have my life destroyed by being in and out of the hospital so much, undergoing nonstop procedures and awful testing if all I had to do was have my diseased colon removed.
And then I got my answer. Surgery is a big f*ing deal! And it is an even bigger deal when you are removing an organ that is NECESSARY to a healthy digestive track. Not having a colon is not like not having an appendix, or your tonsils, or your wisdom teeth, or your gall bladder. You notice.
As most of you probably know by now, I was far from the best case scenario when I had my large intestine removed in an effort to “cure” my ulcerative colitis. I went through years of physical trauma and mental anguish. And now I have a permanent ileostomy.
Am I thankful that I do not need to be on medications since my diseased colon is gone? Yes. Would I ever want it back? Of course not. Am I in any shape or form comparing UC and CD? No and I never ever would.
All I am saying is that when you say the cure for ulcerative colitis is removing the colon, it sends the wrong message. It says to people who do not have inflammatory bowel disease and who are trying to become more educated that those of us who have had their large intestines removed are now living life as normally as they did prior to being diagnosed. And that is simply not true.
We need a real cure for crohns disease AND ulcerative colitis. The removal of a vital organ should never be construed as the answer and it pains me to see foundations and advocates either sending this faulty message, or blatantly disregarding what patients who suffer from ulcerative colitis go through.