Extraintestinal Manifestation Suggestions?

I’m a physician (NOT a gastroenterologist!) in the Air Force. I live with my husband and two dogs in possibly one of the coolest states.

Colitis Symptoms:

Recently, my bowel disease has been under excellent control (confirmed with colonoscopy), but I’m struggling with extraintestinal manifestations – a migrating polyarticular arthritis, recurrent episcleritis, erythema nodosums, and small-vessel vasculitis. I also have chronic gum disease (periodontitis) which multiple periodontists haven’t been able to treat or explain; I don’t know if it’s related to my Ulcerative Colitis, but it seems to flare in conjunction with some of my UC-related symptoms.

Alexis’s Story – Extraintestinal Manifestation Suggestions

UC has been a part of most of my adult life. I was diagnosed with UC (pancolitis) at age 21, initially off and on prednisone for several years. In about 2008, I went on Remicade, and was on that until late 2016, at which point I was both tired of the side effects (a pretty resistant case of eczema and recurrent face breakouts), and felt like it was not controlling my extraintestinal manifestations. Erythema nodosum was my first extraintestinal manifestation which showed up in ~2015.

Since then, I’ve recurrent episcleritis, a migrating polyarticular arthritis, and a leukocytoclastic small-vessel vasculitis. I switched to Entyvio in Nov 2016. I’ve been on sulfasalazine, Apriso, and Lialda, and now back to sulfa (dose recently doubled).

I’ve had some periods where the UC was under great control and I felt healthy, and a few, mostly minor, bowel flares throughout the years requiring either oral prednisone, cortifoam, or cortenemas. My family (none of whom have an IBD), have always been supportive. My sweet husband has been incredibly supportive, especially over the last couple years as I’ve had a real tough time with the extraintestinal manifestations. My husband and I have been diagnosed with unexplained infertility (which I know the literature says shouldn’t be related to the UC), and are starting infertility treatments.

At the moment, I’m taking sulfasalazine (2,000 mg twice daily) and vedolizumab (Entyvio) infusions every 8 weeks. I also take 4 gm daily of folic acid (to offset the sulfasalazine). I am nearly 3 full weeks into a ketogenic diet induction.

I am curious if any other UC’ers have had gum disease, which is something I’ve been struggling with for several years. I can’t find much convincing data in the medical literature to suggest that it’s related to the UC. I also considered maybe it was a side effect of the remicade, but it hasn’t gone away after being off the remicade for several months.

Medications:

I’ve been on sulfasalazine, Apriso, and Lialda, and now back to sulfa (dose recently doubled). I’ve been on remicade and now entyvio. I’ve been on prednisone, cortifoam, and cortenemas to treat flares.

written by Alexis N

submitted in the colitis venting area

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