Monday, November 2, 2015

The Importance of an Accurate Diagnosis (Crohn's & Colitis Awareness Month)

November is Crohn's & Colitis Awareness Month. I had never known exactly what Crohn's & Colitis was until I got sick. There's still a lot of confusion out there in the community as to exactly what it is. And it can be a confusing disease to diagnose. It's like a giant game of "What's Eating Jacob This Month?" and I'm the reluctant guest star.

Crohn's Disease and Ulcerative Colitis are known as Inflammatory Bowel Diseases (IBD). Ulcerative Colitis is diagnosed when the disease effects the colon and rectum, but if the disease is elsewhere in the digestive tract, it's Crohn's Disease. These two conditions are often mistaken by the community as IBS - Irritable Bowel Syndrome - (maybe because the acronym is one letter away), which can cause some similar symptoms to IBD. However in IBS, there are often no changes to the lining of the GI tract, you don't tend to see ulcerations develop, the blood inflammation markers don't often go skyrocketing, and it shouldn't cause you to pour blood. IBD is in part thought to be an auto-immune disorder, where my body is literally attacking itself. So why is this disease so hard to diagnose? 

For me, I've always been somewhat on the small side, but I was born in December so of course I'm going to be smaller than my classmates. I never really had any huge problems with my guts until one day I woke up in severe pain in my stomach. Then the washroom visits started. In those early days, we would joke about moving in a bed to the bathroom, it was that bad. Yet, it really wasn't a joke because I honestly was there that much. I knew something was wrong immediately because I was bleeding pretty heavily when I went to the bathroom. The doctors at first thought that maybe it was a flu, or a bacterial infection. One time a doctor even suggested that I go home and drink water! About 3 weeks after my symptoms began, it got to the point where it was clear to even the doctors that I was quite sick. An ultrasound and xray showed that my ENTIRE colon was heavily inflamed, a condition known as pancolitis. To confirm the diagnosis, I had my first set of scopes done in July 2012, and the doctors diagnosed me as having severe ulcerative colitis, and my colon was toxic. 

So why did they diagnose me with Ulcerative Colitis when I now have a Crohn's diagnosis? According to the tests done at the time, and on about the next 3-4 sets of scopes, my inflammation was located only in the colon and rectum. The biopsy reports did not show any of the cells that were more consistent with a Crohn's diagnosis, like granulomas. The doctors were 99.5% sure by the time of my total colectomy surgery that I had Ulcerative Colitis. Out came the colon after all the medications failed to make a difference. 

Things never got better after the colectomy. I kept bleeding, now into my ostomy bag because I no longer went to the bathroom the normal way. 5 months after the surgery, I went back in for more scopes and biopsies. They found that my stomach and duodenum (the first part of the small intestine after the stomach) were heavily inflamed and the duodenum was extremely sick looking. Even then they were reluctant to call it Crohn's until we did a strict 6 month gluten-free diet to rule out Celiac. 

I couldn't ever go longer than an hour, two at the very most without a bathroom trip. I thought at one point I should name the toilet because I was spending so much time with it. Eventually, after 6 long months and 1 Gene Testing later, I was diagnosed with Crohn's Disease when the inflammation failed to get better.

I had just turned 9 when all of this happened.

If there had been an accurate way of diagnosing me right from the start, would that have changed my treatment course? Would I still have a colon? The answer in my case is, probably not. Treatments for Inflammatory Bowel Diseases tend to be the same no matter if you have Ulcerative Colitis or Crohn's. There are some medications which show more effectiveness at treating one or the other, but when it comes to the "BIG" treatments (Remicade, Humira, etc), they're used for both of them. My colon would have had to come out. It was so heavily diseased and damaged that it would have only meant more pain and hospitalizations until eventually it led to surgery anyway. By that time I had had 3 major hospitalizations greater than a month, so I was ready to try to be a kid again.

So why, if the treatments offered aren't going to change regardless of diagnosis, do we need an accurate way of diagnosing between these diseases? Because for other kids (and adults too!) it could make a difference to surgical plans. When a person has their colon removed for whatever reason, there is another surgical procedure that can be done once the person's health is restored, called a JPouch surgery. This involves taking the end of the terminal ileum/ileum (the last part of the small intestine before the colon) and creating a "pouch" that acts like a colon. The person than goes to the bathroom normally again. However, the key word to having this surgery is "healthy". For a person like me with Crohn's Disease, I could develop ulcerations at anytime, anywhere in my digestive tract. If I developed these lesions in my pouch, there is a very real possibility that I would have to have surgery to have the pouch taken out, and I would lose even more intestine. Not ideal. I've already consulted with a surgeon about this surgery and was told a very strong "NO" and basically to run from anyone who says that they would do it. Since I have been in a Crohn's flare for 3 years, I would not be a candidate for this surgery.

But, for other kids the type of surgery they do could be decided based upon which disease they have. For a kid with Crohn's but who has inflammation in the colon, they might just be able to do a resection of an area rather than a colectomy, which might help the child avoid an ostomy bag for life (not that there is anything at all wrong with an ostomy bag, but if it can at all be avoided why not take these steps?!).

Research is getting closer to finding out what is causing IBD to develop, but it's not quite there yet. I strongly believe that once we can find out what goes in to causing IBD, we can then find better treatments or a cure. In the meantime, it's important to inspire all people living with IBD (and other chronic illnesses) to keep up the hope even when hope seems slim. Keep fighting even when you feel like you don't have the strength. Keep focused on the light at the end of the tunnel, we will beat this. 

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