I posted the following on Facebook last night. I figured it was pretty good and maybe I should start blogging again with this next phase of my ulcerative colitis journey...
🏥 ULCERATIVE COLITIS UPDATE:
(Read at your own risk. I self-censored and didn’t tell you all the horrible details here, but I do allude to some things that squeamish people may not want to know about.)
My ulcerative colitis (UC) had been teasing me for months 📆. Two weeks ago today I spent the day in bed as my UC took a fast downward coaster ride 🎢 into an abyss of hell… that being defined as hourly bathroom runs, zero energy, and abdominal distress.
On October 1st, I messaged my GI doctor at the University of Chicago (UofC) for help. He responded immediately and had me stop Xeljanz, start 40 mg of prednisone (the devil’s tic tacs 💊), and go for some lab work 💉. The addition of prednisone has allowed me to sometimes make it more than an hour without a sprint to the toilet 🚽. (And in the spirit of keeping it real, let me just say that my hourly output is indicative of the inflammation 🔴 in my rectum and colon, and rarely has any characteristics that one might expect 💩. ) A UC flare makes you exhausted as it is, but know what else zaps your energy? Loss of blood.
The past two weeks I’ve been using intermittent FMLA leave for work 🗂. I’ve been working from home a few hours most days and have even visited the office for a few hours on several days to deal with in-office work. I’m not sure if I can fake it 🎭 this week to make public appearances at work. We shall see.
My colon and exhausted body 🥴 don’t like to leave the house. I should also note that I’ve been wearing diapers continuously for peace of mind. Did you know that when your rectum and colon are inflamed 🔥, your sad sick body can’t tell the difference between gas, solid, liquid, or nothing? And urgencies are unreal. The diaper has proven to be a good decision on most days.
On October 10th I decided against a clinical trial that I was offered and let my doctor 👨⚕️ know that I’m not interested in any other drugs 💊. I laid out all my quality of life issues to my doctor and let him know that it’s time for j-pouch surgery 🔪 (Ileal Pouch Anal Anastomosis).
In five years I’ve been on five drugs (Remicade, Entyvio, Humira, Neihulizumab (trial), Xeljanz, with various “helper meds” like sulfasalazine, azathioprine, allopurinol, etc.) and at present, even the 40 mg of prednisone isn’t doing a whole hell of a lot for me.
It’s taken my family and close friends to help me realize that I haven’t been me in the last five years 😔. I haven’t had the energy or give-a-damn that I used to. I never really was in much of a real remission in all that time, and if I ever was it wasn’t for very long. When people outside my body are realizing my misery 🤔 more than I am, it’s a wake-up call. I don’t think a gamble on another med is worth my time. I just want to be done with my colon. I miss my life. I miss having the energy to be able to make plans with friends and family and take my niece who is almost five years old on adventures (I’ve not been me at all in her lifetime.).
On October 11th I received a call from UofC to schedule an appointment. This Thursday, the 17th I have an initial meeting with a colorectal surgeon! 👨⚕️ I’m still in misery, but when I think about losing my colon, I have a sense of eventual hope. I can see a day where I get my life back…
Here’s a link to more info and a short video that describes the surgery:
[If you are a fellow IBD fighter, have had j-pouch surgery, have experiences with the UofC colorectal surgery department, feel free to drop me a comment and let me know!]
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