Does Surgery Cure Ulcerative Colitis?
While I work hard to provide you with accurate and up-to-date information at the time of publishing, as time passes some information may no longer be relevant or accurate. The field of medicine is a constantly evolving science and art. Thankfully! In 1951 a woman was given a lobotomy to treat her ulcerative colitis. That wasn't even that long ago!
The removal of the colon and rectum has long been said to be a cure for ulcerative colitis but there is much debate by patients and clinicians on whether or not that is true. As time has passed and understanding of IBD has changed the word cure doesn’t seem quite right to most people these days. One notable sign that times are changing is that the Crohn’s and Colitis Foundation of America previously listed surgery as a cure for UC on their website but they have recently changed that.
The thought behind surgery as a cure for ulcerative colitis is that UC only affects the colon and the rectum so a total proctocolectomy (removal of the colon and rectum) would essentially cure the disease.
How We Define Cure
People differ in the way they think of a cure. I think that for a lot of patients they view a cure as having to take 1 dose of some medication that is invented as a cure and then be done with it. Once they take the cure their body goes back to working exactly like it would had they never had the disease in the first place. Sort of like taking a magic potion.
People with cancer are told their cancer has been cured after the disease has been in complete remission for 5 years. This doesn’t mean that the cancer can’t come back later and there is no way to truly tell if all cancer cells in the body are gone.
So the “cure” is actually more like a long, stable remission. Not all oncologists use the word cure because of that.
A Cure or Trading One Set of Problems for a Different Set of Problems?
The patient with “cured” cancer may live with awful complications of having had cancer because of damage done to the body by chemotherapy and radiation. It’s no longer the cancer causing them problems but because of the cancer they now live with complications of it’s treatment. The cancer is gone but had they never had cancer to begin with they wouldn’t have these complications. In breast cancer a cure may involve surgical removal of one or both breasts. The patient is told their cancer is “cured” but in order to cure it they had to lose a big part of themselves. Would that patient call themselves cured? I think it comes down to personal opinion.
So is Surgery A Cure for Ulcerative Colitis?
After total proctocolecomy there is no way to guarantee a complication-free life with IBD from then on. If a patient has expectations that life will go back to exactly the way it was before they were sick they may be setting themselves up for disappointment. Even in the best of circumstances your body can never be exactly as it was before surgery because you are permanently removing an organ from it. Your body will look and function differently from then on. This isn’t necessarily a negative thing but it is important to have realistic expectations. If your idea of life after surgery is a life that looks like it would if UC had never been part of it then you’re setting yourself up to be let down.
Types of Surgery for UC
If you have Ulcerative Colitis the two most common options for surgery are:
Proctocolectomy with end ileostomy: The colon and rectum are removed and a small opening (stoma) is created in the lower part of the abdomen. The end of the ileum (the last part of your small intestine) is brought through this hole so that your body can eliminate waste in this new way now that your large intestine is gone. There is no way to control when waste is expelled from the stoma so a pouch has to be worn over it to collect waste. The pouch is commonly referred to as an ostomy bag.
Restorative Total Proctocolectomy with IPAA: The entire colon and rectum are removed and a reservoir is created out of the end of the small intestine, called the ileum. This surgically created reservoir, nicknamed ‘j-pouch‘ because it resembles the letter J, is then attached to the anal canal with the nerves and sphincter muscles left intact to maintain continence. Stool is stored in the J-pouch until a person needs to have a bowel movement. This means that the patient will not need a stoma after removal of the colon and will still be able to eliminate waste from the body through the anus. For this reason this surgery is very appealing to most patients. This is a complex surgery so it is normally done in 2 (and sometimes 3) different operations.
Complications that May Occur After Surgery
There is no perfect solution for such a complex and often complicated disease. No matter what kind of surgery you choose (or maybe you had no choice) complications might arise. This is why so many patients understandably get upset when hearing that ulcerative colitis has a cure and that cure is surgery.
Is This A Cure?
Let’s look at some arguments against surgery being a cure for UC.
There is the argument that having to have an organ removed doesn’t sound like a cure at all because your body will always look and function differently than what is considered “normal,” and it will never be like a healthy person who doesn’t have UC so it shouldn’t be considered a cure.
There is the argument that surgery should not be considered a cure for UC because ostomies and J-pouches can come with their own set of challenges. Skin issues around the stoma, challenges with ileostomy bag leaks, dehydration from high output, obstructions, problems with the function of a J-pouch, and possible infertility after IPAA surgery to name some of them. These issues are not Ulcerative Colitis but they are difficult situations that can lower quality of life. People say it can be like trading one set of problems for a different set of problems.
There is also the argument that since IBD is a systemic disease that has many extraintestinal manifestations that can come with it that even though the colon
is gone many people still deal with those other challenges. That said, removing the colon often does stop challenging extraintestinal manifestations since most tend to occur when there is active disease and go into remission when the IBD is in remission.
And last but not least, and the strongest argument in my opinion, is what we see in patients who end up with pouchitis after J-pouch surgery. What is interesting is that pouchitis is almost exclusive to having UC. It is rare in people who have had IPAA surgery for other conditions like Familial Adenomatous Polyposis. This shows us that something is different in the patients who have had J-pouch surgery for UC compared to those who have gone through the surgeries for other reasons. Why are UC patients ending up with inflammation in the J-pouch way more often than the other people who have J-pouches?
There are reasons but that is a different post for another day. My point in mentioning it here is that it’s all IBD. If inflammation in J-pouches is occuring then surgery should not be considered a cure because the person still has Inflammatory Bowel Disease.
Doomed to Live A Life of Misery After Colectomy?
Generally speaking most patients with Ulcerative colitis who have surgery go on to lead very fulfilling lives with little to no issues as long as they have a true case of UC and do not have surgical complications. This is especially true for patients who have a total proctocolectomy with end ileostomy vs a J-pouch where pouchitis may occur.
Even though things can and do go wrong for some patients after surgery the success rate for both IPAA surgery and proctocolectomy with end ileostomy is high. Most patients report that living with their ostomy or J-pouch is much better than what life was like when they had their colon.
There are even some patients who prefer to call themselves cured of their Ulcerative Colitis. You may hear them saying “I had UC” instead of saying “I have UC.” In their eyes they went through a surgical cure for Ulcerative Colitis.
To Sum it Up:
People have different opinions about what should be considered a cure. I think a lot of people think of a cure as the perfect solution. It would mean going back to life as if you had never been sick in the first place but that simply cannot happen after such a major surgery. Regardless of whether surgery is a cure for UC or not it can be said that surgery for ulcerative colitis has a very high success rate and that most people are happy with the outcome.
Yes. I think surgery in most cases improves life tremendously.
Yes, but luckily a lot of EIM’s parallel disease activity in the gut so with removal of the colon that will hopefully help with EIM’s as well.
I think the person with UC who has surgery has to define what cure means to them.
There can be serious risks to surgery and there are also serious benefits to surgery. For me personally I am happy living my life without my colon. I do want to state that I do not have Ulcerative colitis; I have Crohn’s Disease but was priorly misdiagnosed as having UC and had my J-pouch surgeries done during that time. There is not a day that goes by that I miss my colon because it took away almost all of my quality of life. Would I miss it if it were a healthy colon? Of course! But it wasn’t and so I am happy to trade it for my J-Pouch.
This post was edited on 04/08/2019 for grammar, clarity, and appearance as I transfer my site from Tumblr to wordpress.