Remember how about a month ago I was blissfully digesting things normally? Well, my intestines have gotten cranky again over the last couple of weeks and I am tired, headache-y, and disappointed. I met with my doctor today and we are now increasing my Imuran dose to three 50 mg pills a day. And I have to get a poo sample analyzed to make sure I don’t have a bacterial infection of some sort. Ick. Hoping to get back to feeling blissfully normal soon!
It’s been about a month since I started on Remicade, and a little more than two months since I started taking Imuran, so this seems like a good time to give an update on how my Crohn’s treatment is going. In short: I feel good! I’d say that by about a week after my first Remicade infusion, I was feeling well pretty regularly. Since then, I’ve been feeling like I’m digesting things normally (no pain, no sudden bathroom trips, and hardly any gurgles coming from my intestines). And I’m feeling more energetic than I have in a while, too. Also, my blood tests have shown that my C-reactive protein levels (kind of a marker for systemic inflammation) have dropped a lot and are now well within the normal range.
In fact, I’ve been feeling well enough to start experimenting with adding foods that seemed to be giving me trouble back into my diet. The first test was a glass of champagne when I was in Pittsburgh: no problem! Then a few days later, I had a veggie wrap, filled with fresh vegetables and falafel (that contained some wheat). Again, no problem! About a week later I was feeling really brave, in combination with really craving bread or a bagel. So I ate a piece of whole wheat bread, with peanut butter spread on it. It tasted great, but within a couple of hours I realized that I had pushed too far with this experiment. I felt sick for about 24 hours, almost certainly thanks to that one piece of bread. After another week of feeling good, I was back to experimenting with my diet. I ate quite a bit of our pinata candy (we overestimated how much candy the pinata would hold, so there was lots of extra candy), and that was fine. Our pinata party guests left some spice cake and a chocolate chip cookie with us after the party, so I tried those out (one serving a day) during the following week. That all went well too, so then I was feeling really confident. So confident that I tried something my intestines have never been a big fan of, even in the best of times: coffee. A cafe mocha, to be exact. That went badly, but a few days later I was back on the horse and ate some veggie chicken (which contains a lot of gluten) on pizza (with a gluten-free crust and vegan cheese, no risks there). I felt just fine after that experiment too, so I am really feeling optimistic about eating some of the foods that have been off-limits, in moderation.
Last week, my Imuran dose increased to two 50 mg pills each day. You wouldn’t think that taking one pill with breakfast (along with my multivitamin) and one with dinner would be that difficult to keep track of, but for me, somehow it is. So I gave in and bought one of those days of the week pill cases like the one my grandmother used to keep track of her many medications when she was very sick near the end of her life. In order to make this new pill popping routine more fun, and my need for such a pill case less depressing, I bought the cutest one I could find (i.e., pink), and covered it with super cute stickers that were left over from a Hello Kitty calendar I had a few years ago (probably not as many years as you think, haha).
And for when I’m out and about and need to take a pill, I wanted a smaller and more discreet pill case to keep in my bag. This Hello Kitty candy case will do the trick!
Hopefully I’ll be able to keep my pill popping schedule straight now!
I don’t mean for this blog to be super Crohn’s focused, but at the moment my main obsession is the journey towards feeling healthy regularly. I met with my doctor earlier this week and we talked about my colonoscopy results. My small intestine is quite inflamed: narrowed, red, raw, and has lots of ulcers in it. There was also some mild inflammation (just looking a bit red) in a few spots in my colon. We discussed medication options and decided that we’d go with one of the more promising therapies in the literature: combination Remicade (a TNF-alpha inhibitor) and Imuran (an immunomodulator) therapy. This combination of drugs seems to be the most effective treatment we currently have for putting Crohns-y people into remission and keeping them there. Some of the potential side effects are a bit worrisome, but the major ones are rare, and I think it’s worth the risk. I want to get my digestive system as close to normal as I can (I want to eat seitan and gluten-containing baked goods again!), and I want to feel normal (or close to it) often enough so that I can take it for granted again =)
So, I just started taking Imuran this week. So far I haven’t experienced any side effects. I’ll be getting lots of blood tests over the next month to make sure that I don’t end up with bone marrow suppression or other weird things happening with my immune cells. If all goes according to plan, I’ll probably start getting Remicade infusions next month.