Wednesday, August 30, 2017

Ulcerative Colitis - Year 11

Just got back from a GI doc appointment. Last week I had a flexible sigmoidoscopy and today was my follow up. I attempted to stay awake during the procedure rather than be sedated, but once they got started I realized I'd rather be put under. It was uncomfortable and painful and I called the ref and tapped out. I'm still really glad I got to see the part that I did. It was enlightening and empowering for the short time I was awake. It's good to feel involved in the process. Anyway, the results are that things are looking worse than when I had my last colonoscopy based on the visual assessment and biopsies. I had approached my doctor awhile back regarding changing meds to Entryvio. Someone I know started taking it and is doing much better. My doctor finally agrees that it's time to ramp it up. After 11 years of various humiliations and fear I'm going from the lowest grade meds to the next level. This new medicine has only been out for a couple years, so there really hasn't been time to gather data. Fucking sucks. I am by nature a cautious person. I don't like engaging in things that haven't had time to be put through the paces. Furthermore, it's an infusion, which means I'll have to take it intravenously. I asked what the timeline looked like and if they would at some point decide to take me off. The answer? I'll likely be on it for the rest of my life, if it works. That means if I live to 99, I'll be hobbling through the doors of the center every 6-8 weeks with my curly white helmet hair and pained shuffle getting my infusion. It sounds overwhelming. I guess I'm already taking meds I'm projected to be on for life, but an infusion sounds much more intimidating. Right now daily I'm on 6 pills plus (brace yourself) a nightly enema. No good way to put it. Is this any worse than that? I'll have to take that time off of work every 6-8 weeks to go in for the rest of eternity. It just makes me really sad. Why was I born with a lemon of a body? Drove it off the lot, thought it all was good, then BLAM! Up shit creek without a paddle. I'm trying to be positive. This might open up the world to me. I've had all these hangups about being able to travel and fully enjoy life and this might actually make it to where I'm able to do so without carting around bottles of pills and boxes of enemas. Might not work, on the other hand. But I guess I'll cross that bridge when I get to it. I've been trying this plant based, whole food diet to see if it has any impact on my inflammation and I feel like it has improved things, but I'm not that hardcore and I probably will give in pretty soon. I got the idea from a couple 'documentaries' (I use the term loosely) on Netflix - What the Health? and Forks Over Knives. I felt like it was helping, but today I had kind of a rough day, so maybe I'm full of shit and it doesn't make any difference. What's weird is, I felt worse during the time my colonoscopy was done vs. when the flex sig was done, but my results are opposite. Now I'm plummeting toward this infusion and haven't given myself enough time to test the change in diet. That's why I wanted to know about the potential for backing off the meds in the future. She did say it's possible to attempt once one has been in "deep remission for many years." Doesn't sound like much of a silver lining, but it's not nothing. What I came to during writing this is, I'm already doing something for life. Might as well try a different route because it's essentially the same concept. There goes my commitment phobia again, sounding alarm bells.

Wednesday, August 9, 2017


Coming home, wind in sails, elated at the freedom and possibilities. Finding dinner, to cook or be cooked for. Settling fork in mouth to communicate in a series of grunts between commercial breaks. Frustrations over TV breakdowns. Threats of baseball bats and eventual giving up for a shower and restless sleep, wherein dreams are just fears and catalysts to an angry state upon waking. What do I want? It doesn't feel like this means anything.