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Doctor's Belief that UC will be Cured is Dangerous

If you have ulcerative colitis, you may have heard that your disease can be cured once you remove your large intestine. After all, without the organ, a person can’t really have colitis anymore, right? The answer to that question is in theory, yes. A person technically cannot have “colitis” if they no longer have a colon. However, given that ulcerative colitis is a disease that is impacted by the immune system, and has the ability to exhibit symptoms outside of the digestive tract (aka extraintestinal manifestations), the real response to that question is that a person with inflammatory bowel disease will always have IBD. It will always be in their body, even though surgery can be very beneficial for many people.

A cure for ulcerative colitis?

A cure, to me, is when a person goes back to exactly how they were prior to being diagnosed with the disease. I like to use the appendectomy example. An appendectomy is a cure for appendicitis because once removed, that person goes about their business as though nothing happened. They aren’t at risk for anything else. There is nothing to really manage or keep an eye on.

However, when a person has ulcerative colitis and undergoes the treatment option to have a total colectomy, that individual will either need to live with a J-Pouch or an ileostomy. While both surgical procedures can greatly improve quality of life in those whose colons are wreaking havoc, there are still other things that must be looked at and managed. For example, pouchitis occurs in approximately half of people with J-Pouches. Pouchitis, in a way, is like having UC in your J-Pouch. While it is usually more easily dealt with than an inflamed, ulcerated colon, it still requires medications, doctor visits, tests, and lifestyle changes. It is also not uncommon for someone with UC to be re-diagnosed with Crohn’s Disease.

I thought I'd be fine once my colon was removed

Prior to my total colectomy at the age of 15, my parents and I were told that once my colon was removed, I would be completely cured as though UC never entered my body. We were told that my J-Pouch would act as a new colon and I would never know the difference. It honestly made me wonder why on earth I wasted so much time with terrible medications, blood transfusions, hospitalizations, etc. I wondered why, if it was so simple, my doctor didn’t recommend to my parents that my colon just be removed as soon as I was diagnosed.

To make a long story short, I dealt with a lot of complications following my total colectomy. Obviously, not everyone does so I hope I am not being too discouraging! I will say that complications or no complications, my colon needed to come out.

I stopped seeing a GI and thought that everything was better

Once things got a bit better, my parents and I saw no need for me to see a GI. After all, we had been told that I should go on living as though I was never diagnosed with ulcerative colitis. Does someone who had their appendix out still have regular check-ups, blood work and tests done to ensure things are okay? Of course not. So, why should I be any different?

I didn’t see a GI for years because I was told I was cured. I had no blood work done beyond the basic stuff they do for physicals. I had no imaging tests or scopes to make sure everything was okay. While I felt better than I did when I had a colon, I still never felt well. But, I never understood why that was. I began to think I was crazy or something for not feeling completely fine.

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Pyoderma gangrenosum and seeking answers

I developed pyoderma gangrenosum, an autoimmune skin disease, that is very much related to inflammatory bowel disease. I never understood where it came from since I was supposed to be cured.

When I finally saw a GI, I went in with the intention of getting some answers. I had become more educated about inflammatory bowel disease. I was older and had a better grasp on the important parts of life. I also met through the interwebs a lot of IBD patients and heard their stories. I slowly started to learn that I wasn’t the only one with UC who continued to have issues. I had my entire surgical history (75 pages!) sent to my new GI prior to our appointment so she had a better understanding of my case since everyone’s IBD is so unique.

Within minutes of seeing this doctor, she told me that I was cured. She went on to say that I probably just had IBS. Obviously, this was not a great experience so I made an appointment with another gastroenterologist in the same hospital/practice. This doctor was extremely thorough and treated me as though I had IBD, not someone who used to have it. Because of his mentality, he sent me for imaging tests, blood work, various scopes, etc. He believed me when I told him something was very off.

Sepsis, abscesses, and infection as a result

A year later, I developed sepsis and almost died. I also underwent another abdominal surgery. My two surgeons told me I was lucky to survive. Apparently, I had a lot of abscesses and infection throughout my body. Because my physicians told me they believed this had been brewing for years, it impacted other parts of my body as well, especially my reproductive organs. I ended up needing to have my left ovary and fallopian tube removed because of this.

I share this because, in my opinion, gastroenterologists who believe ulcerative colitis can be cured are a danger to patients. My first GI told me this was the case and it made it so I went for years without being under the care of an IBD specialist. Thankfully, I was older and wiser when I saw my second GI a few years ago. I could even tell from the patient portal that the first GI diagnosed me with “nausea and bloating” while the doctor who has become my physician continued to say “inflammatory bowel disease.”

Ulcerative colitis patients, I plead with you to learn from my mistakes. While you may feel better after having a colectomy, you still have inflammatory bowel disease. You need and deserve to have a doctor in your corner who will continue to treat you as though you have a serious condition. Meaning, check-ups, blood work, scopes, etc if needed. No one should ever dismiss your symptoms and if they do, there is something wrong with them, not you.

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