IBD Flares with Total Colectomy

They’re called extraintestinal manifestations of IBD.  Nobody told you about them, and if your doctors don’t talk, they probably don’t realize that your symptoms are all related.

A couple years ago I got a weird rash that started on my stomach and spread slowly to my legs and a couple spots on my arms.  A physician’s assistant diagnosed it at scabies but I knew he was wrong because it didn’t itch at all.  After going to two different dermatologists it was diagnosed as gutate psoriasis.  The strong steroid lotion they gave me worked and the rash went away.  Turns out, it was probably related to my UC.

Before my surgery, my internal medicine doctor sat me down to make sure I understood that taking out my colon didn’t mean I didn’t have UC anymore.  Extraintestinal manifestations are prevalent in both UC and Crohns and can include things like skin rashes, kidney stones, joint pain/arthritis, eye problems and more.  While I was in the flare that led to my colectomy I developed joint pain in my knees and toes.  Since surgery, I’ve been flirting with joint pain from my toes and heals to my knees and wrists.  A rash similar to the one that I had a couple years ago has been starting to show up recently as well.

Additionally, I still have a short bit (about 4″) of my rectum that flares regularly.  Most of the advice I’ve read about this from nurses and surgeons is that people sometimes have to empty from their butts a couple times a week. Apparently my rectum is an over-achiever, because it makes a lot of mucous and makes me go to the bathroom (with urgency) much more often.   Suppositories help manage the flares a little, but I’m starting to think as long as my rectum is in me, it’s going to be a trouble-maker.

Immune System Attacks ItselfI’m thinking these extraintestinal manifestations are probably linked to my body still flaring, hormones or (most likely) stress.  I wonder what I can do to help prevent these extra symptoms from occurring…I don’t quite know where to start looking for answers.

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