The TMI Post, The Superman Meds.
These TMI posts are only if you want to know the details of my life with Crohn's disease. I did not want my blog to be all about my illness, but It's a massive part of everything I do. I do want to witness it, but I don't expect anyone else wants to know the details. Spoiler Alert there is poop talk in all my posts with TMI in the title.
More Powerful than a Locomotive
I feel like Superman right now. I just finished my second week on Budesonide and have all-day stamina. I walked 10k steps on Saturday and stood all afternoon in the sun at a street fair on Sunday. That is how I think I should feel all the time. Next week we are going on a planned road trip for the weekend. I expect the stamina to hold up for that event as well. It makes me wish I had started on it sooner for our holiday week in Hawaii. Instead, I struggled to hang out on the beach, which should be the easiest thing for anyone.
I have been on a cycle of drugs that make me feel so well and full of stamina that I wish I could take them all day. But you can't. They are anti-inflammatory steroids that you can only take in short doses. I am on them because inflammation has returned to my small bowels.
To recap, the last bits of both my internal j-pouch and butt hole were removed and sewn up last fall. At that point, I had no inflammation in my bowls, so I went off my treatment drug and continued with the antidiarrheal treatment with over-the-counter and prescription drugs. In early March, I had a scope that confirmed I was inflamed, so I returned to my previous treatment. The stelara is a class of drugs called biologics. Biologics treat a variety of autoimmune ailments. I will give myself a shot once a month starting in April. I had a loading dose administered at the Keck treatment center in mid-March.
Barbie Butt The Broken Portal to the Afterlife
Having my butt hole sewn up is pretty traumatic. I was never much of a bottom, but losing my pizza portal to the afterlife means I won't be entertaining any tops. Also, I feel a bit alien because I never have to sit down to poop again. I thought it would be the armpit of my butt cheeks with no sensation. I was quite wrong. During my last exam, my specialist probed the scar line, which I learned instantly has all the buttons and gears fully functionally death star battle station. I think it would be similar to kicking a girl in the crotch. You usually associate crotch kicks with guys, but it hurts girls just as much. Trust me, a sewn-up poop shoot acts just like the real thing.
Next, Prototyping with Side Effects
I spent Monday, Tuesday, and Wednesday remembering the word "prototyping" to use in context. I kept the book passage From the Pathless Path handy that uses it because every time I tried to use prototyping, it was trapped near the end of my tongue. So I had to sub in modeling as a placeholder.
Maddening. Being off my mental game is a side effect of the Budesonide. Because I could not find my phone Tuesday night as it was sitting on my desk in front of me.
I am prototyping the next three months for activity levels I can expect to bring to the table. I don't know how effective the Stelera is in my case. I have been on it for some years now, with no sense that I am getting better. Could it be effective at making me feel less ill? Who can say? That is why I am prototyping my activity level. I want to be more hands-on with this new prescription start. Once I go off the anti-inflammatory Budesonide, I want to pay close attention in April, May, and June to see if I can maintain this higher current functionality. Because right now, I don't feel dizzy, have better stamina, and have fewer body cramps and pain. Will I be able to maintain this good vibe on Stelara alone? Also, will my brain fog lift so I can find my words ready to use without a prop?
TMI
What kills me is the combination of not retaining enough fluids along with high output. Most of the time, my output is double the expected production of 1800 ml to 2000 ml. My daily output is near what my specialist considered normal at about 800 to 1000 ml daily. I know this because I have to pour it out of my ostomy bag into a measuring cup 5 to 10 times daily before I flush it.