A little over two years ago, I wrote about my journey-my “origin story“-up to that point with Ulcerative Colitis. I had been on the Specific Carbohydrate Diet (SCD) for 10 years and I was making do. Towards the end of that post I wrote that “I’ve always had a pretty good life health-wise, even with colitis, and I realize that I could be so much worse off.”
Well, as they say: That was then, and this is now.
I had no idea how much things could change in 3 years, and how untethered and bewildered the ensuing time would leave me.
For the most part, it’s only been just over a year and a half of digestive trouble, but wow, what a year.
I guess it started back in 2015. I had a fever spike of around 103 one day and then had some pain around my anus, and I wasn’t sure what it was. I went to see a colorectal surgeon – I think I saw them because it was going to take too long to see my GI doc at the time, something like 2 weeks. I was in too much pain for that. I don’t recall that diagnosis, maybe hemorrhoids. I think he prescribed Prep H suppositories and maybe that was it. Took those and the problem cleared up for the time being.
Fast forward to a year later. My dad died in April 2016, and mentally I was dealing with the fallout from that along with other family issues. Lots of stress and pressure under the surface. Also adjusting to a new job as a Content Strategist and writer at a digital agency, trying to make sense of a way of working I wasn’t used to: hourly billing.
I don’t recall when exactly the symptoms started, but I do remember it was September when I realized I needed to do something about the pain. Different than previous pain I’d had during flares, this was very acute and localized, again in the anal region, and it wasn’t going away.
I made an appointment with a new gastroenterologist as I felt my previous one wasn’t all that engaged in my treatment. I had done a few colonoscopies with him but he seemed detached. Too clinical, maybe.
I chose a my new gastro doc from the practice website. His credentials were solid and his bio said that he was active in looking for new treatments/therapies for Crohn’s & Colitis. I wanted someone that knew about Colitis and might be open to my “alternative” treatment of the Specific Carbohydrate Diet that helped mitigate my symptoms for so long.
Our first meeting in mid-October 2016 I weighed 170lbs. I weigh ~155 today. They put me on Cipro & Flagyl to help heal what we thought at the time was just a fissure. Next was a pelvic MRI to rule out cancer or any other internal mass. It found a fistula along with an intersphincteric perianal abscess. That’s what the pain was. Also it suggested Crohn’s Disease, not Ulcerative Colitis, based on some scarring near the ileum. This was in the report but I think my new GI doc kept that to himself until they got a look via a colonoscopy not too long after.
After my colonoscopy my doc told me that I have Crohn’s Disease, not “just” Ulcerative Colitis. The diagnosis was based on the presence of abscess/fistula along with “skip” lesions, meaning that there was inflammation & ulceration near the ileum. I sent the pictures of my colon to a friend who is a surgical grossing tech and they agreed with the Crohn’s diagnosis on the basis of the skip lesions.
So I felt like I had to adjust my entire life – since 1994, anyway – and come to terms with my new diagnosis. I have relatives who have Crohn’s Disease but I had always identified as the Ulcerative Colitis guy. But not anymore, according to my GI doc. And that was going to take some getting used to.
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