Update: GI Visit Follow Up

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Last week, I finally had my follow-up visit from my colonoscopy in June. I had already received the full report and pathology findings from the biopsy in the mail, so the results weren’t a surprise—hence I didn’t mind waiting a few extra weeks for my follow-up appointment (they did offer to get me in sooner). Also, I feel good. I wasn’t expecting the appointment to reveal any earth-shattering findings, so I didn’t feel the need to rush in.

The colonoscopy in June was my ninth one since 2007 and it was the third in a row that showed no inflammation and normal results—remission. Aside from a three-month flare last summer, I haven’t had any symptoms since.

In stark contrast to the gastroenterologist who blew me off at the VA hospital when I first arrived here in Florida last year, my new gastroenterologist took me seriously and reminded me that Crohn’s disease is a disease of remission and flare-ups, and that things can change at any time. He was very pleased to report my colonoscopy was normal and that I was in remission, but he still scheduled me for a follow-up appointment in six months for continued care.

With a follow-up appointment on the books, I feel that I have a doctor who both understands inflammatory bowel disease and cares about me. Even though my appointment with him was less than five minutes, I didn’t feel rushed or like I was just another number in his clinic. There simply wasn’t much for us to talk about with my results being normal and me already understanding this disease.

Though Crohn’s disease takes up less of my mental space and attention these days, IgA nephropathy routinely pushes itself to the forefront of my thoughts. I’ve been feeling fatigued again and having the strange feeling that I can only think to describe as if my body was running on dirty fuel—it’s a strange sluggishness. It feels as though my kidneys are lagging behind in filtering the waste out of my blood, which is what happens with IgA nephropathy, but it’s strange to almost feel it happening. (I’ve said this before and I’ll say it again, anyone with a medical background reading or hearing that statement would probably think I’m crazy, but from a patient perspective, that’s how my experience feels…and until I can come up with a better way to describe it, that’s how I’ll say it.)

Slight fatigue and weird feelings aside, I did come across an article that gives me hope about increasing options in the future if my kidneys do ever fail. The Associated Press reported last week on August 16, 2023, that a kidney from a genetically modified pig that was transplanted into a brain-dead man has been working normally for over a month. According to the article, “More than 100,000 patients are on the nation’s transplant list and thousands die each year waiting.” Additionally, “rather than last-ditch efforts, the Food and Drug Administration is considering whether to allow some small but rigorous studies of pig heart or kidney transplants in volunteer patients.” It will certainly be interesting to see what the future has in store.

For now, I’ll keep seeing my doctors (gastroenterologist, nephrologist, and primary care provider), and focus on taking care of my body by getting the best nutrition I can and maintaining my fitness. But most importantly, I won’t dwell on the future possibilities of worst-case scenarios and, instead, I’ll strive to be present in every moment and live each day to the fullest.