Well, we made it through winter…not that we’ve had much of one. It was a good excuse to break out the jackets and drink more coffee, but I don’t think I so much as touched a heater. As we start creeping toward the end of another year, I start wondering whether I might make the leap from here to Christmas without an admission. The last two Novembers – and possibly a third before those – I spent at least half the month in a hospital. From infections to transplants to IBD flares, it’s becoming a bit of a pattern. After last week’s consultation with my gastro specialist, it’s looking like I’ll be able to avoid a hospital bed this year, but I can see one or two hurdles.
After another 2 months of waiting for my next gastro clinic, I was sure we’d be getting into a more detailed conversation about the realities of surgery. Weirdly enough though, it was one of the fastest appointments I’ve had in a long time, and definitely not what I had expected. Apparently, the results of the previous week’s colonoscopy had come back looking slightly better than my last one. While the biopsies showed severe active chronic colitis, visually the inflammation had marginally improved.
I certainly wasn’t anticipating an improvement, as my symptoms have remained basically unchanged. I don’t feel quite as tired as I did, but I’m going to the bathroom just as much, the pain and discomfort are still there, and if anything the urgency has become worse, almost dangerously so.
My doctor then told me I had the option of doubling my biologic infusions rather than heading down the surgical or more extreme therapeutic routes. Given this new, relatively harmless path, I figured why not give it a go. It’ll be three infusions over three months and if there hasn’t been an improvement we can reassess. I can’t say I’m confident that I’ll see any real results, but in the end, surgery will always be there if I need it. For the moment, I just have to deal with the symptoms as best I can and cross my fingers and legs that I don’t lose too many rounds of this IBD version of Russian roulette (at least not at work…).
One of the reasons I’m a little anxious about the next few months is because I’ll also start weaning off the prednisolone. This is great in some ways. It’ll mean my appetite will settle, my chipmunk face will start losing its pinchable cheeks, and if I accidentally miss a dose of medication I’ll hopefully not be bedridden for the next day or two suffering withdrawals. The downside is that prednisolone has been very good at masking the worst of my IBD symptoms in the past, so I may start having worse joint pain, frequency, urgency, weight loss, bleeding, etc. I’m hoping that’s not the case and the biologic kicks in, but either way, I think it’ll be an interesting few months.
Thanks for checking in!