Is it Crohn's? Is it Ulcerative Colitis?
One of the first questions that arises when you are first diagnosed with Inflammatory Bowel Disease is whether it is Crohn's disease or ulcerative colitis. While both are Inflammatory Bowel Diseases, they have key differences that help in differentiating between the two. While ulcerative colitis is specific to the colon, Crohn's disease can affect many parts of the digestive tract from mouth to stomach to intestines (large and small).
When I was first diagnosed with Inflammatory Bowel Disease in March 2016, my initial diagnosis was ulcerative colitis due to my severe inflammation being limited to my colon. However, my GI doctor at the time raised many questions as to whether my disease was ulcerative colitis or Crohn's. The Prometheus sgi Diagnositc test that I was given, which combines serologic, DNA, and inflammatory markers in order to differentiate between Crohn's disease and ulcerative colitis, revealed an almost exact 50/50 split between the two diseases, returning an "indistinguishable" result. This result was rare and raised even more questions as to whether my diagnosis was actually ulcerative colitis.
Despite the uncertainty in my diagnosis, the treatment remained the same, which I failed to respond to. By August 2016 I had lost over 40 pounds and was severely anemic, dehydrated, malnourished, and weak. I also had a severe secondary infection of Clostridium Difficile, which expedited the decrease in my health. But on top of these, I also had ulcers all over my mouth and throat. Not consistent with ulcerative colitis, these ulcers led many doctors to wrongly diagnose me with an infection of the mouth/ throat or simply, a "sore throat." The ulcers failed to respond to medications either, but by that time, my it was necessary that my colon be removed in order to save my life.
Fast forward to almost exactly a year later after 2 more surgeries to create and connect my j-pouch, I began experiencing severe cramping, pain, bloody diarrhea, limited diet, dehydration, and weight loss all over again. Blood tests revealed severe inflammation that was even more severe than when I had active ulcerative colitis. In September 2017, after failing to respond yet again to any antibiotics or probiotics, I had surgery to remove my j-pouch and create a permanent ileostomy.
It is at the removal of my j-pouch that my journey started to take an unexpected turn.
When removing my j-pouch, the doctors unexpectedly found that the severe inflammation was also in a section of my small intestine. Therefore, in addition to removing the j-pouch and everything connected to it, I had a section of my small intestine removed as well. The removed pieces were sent away for biopsies and one afternoon I received a phone call from my surgeon.
My biopsies had come back and the results were more than troubling. In addition to severe inflammation, in less than 3 months, my j-pouch (and the pieces connected to it), as well as a section of my small intestine were covered in ulcers, abscesses, cysts, and necrotizing granulomas. Necrotizing means dying/ decaying. Therefore, necrotizing granulomas are areas of inflammation where the skin tissue has died. It became clear that we were no longer dealing with a case of chronic pouchitis.
Now, with the results of my biopsies and the fact that the inflammation had spread to my small intestine in such a short period of time, a complete change my diagnosis has recently been made.
I have been diagnosed with Granulomatous Colitis, also known as Crohn's Colitis.
Granulomatous Colitis is extremely rare and ruthless sister to Crohn's disease. Granulomatous Colitis is a form of Crohn's disease that is predominately specific to the colon like ulcerative colitis, but can also present symptoms of Crohn's disease like ulcers of the mouth, stomach, etc. These attributes are what gives Granulomatous Colitis its secondary name of Crohn's Colitis.
My diagnosis of Crohn's Colitis pieces together all of the missing parts in my journey with Inflammatory Bowel Disease, explaining the 50/50 DNA testing results, severe mouth and throat ulcers, and the flip-flop between Crohn's disease and ulcerative colitis that the doctors have done the last year and a half. Most importantly, my diagnosis of Crohn's Colitis explains the dangerous, rapid failure of my j-pouch. Suddenly, everything makes sense.
While this diagnosis offers a piece-of-mind in explaining why with so much success from others in controlling ulcerative colitis for years and with j-pouches, I have had no such luck, I would be lying if I said this diagnosis has not shaken me.
There is very little information about Crohn's Colitis to due how extremely rare it is and I must now hope that in removing my colon, j-pouch, inflamed section of small intestine, and everything connected, I will remain disease-free. This, however, is not a guarantee.
I hope that with my new diagnosis, I can bring awareness to Granulomatous Colitis and fight even harder for a cure for all Inflammatory Bowel Diseases so that no one else will have to go through what I have experienced.
The road ahead is long and uncertain, but I have not come this far to only come this far.
With that, it is time to keep on, keepin' on.
Wishing everyone a happy and healthy holidays and New Years!