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.
I had my first Remicade infusion last week. Remicade is a drug that is used to treat a number of autoimmune diseases, including Crohn’s. The drug is an antibody to tumor necrosis factor-alpha (TNF-alpha), a chemical that cells release to regulate inflammation. So basically, the presence of Remicade in a patient’s body should prevent inflammation that is mediated by TNF-alpha. This drug can’t be taken in pill form because the patient’s digestive system would destroy the drug’s activity. Instead, Remicade is adminstered by an IV infusion.
My first infusion appointment lasted three and half hours! When I arrived at the infusion clinic, I was happy to see that rather than a typical hospital setting, there were four cushy recliners in a room with large windows and a big flat screen TV. The TV was off though, as the other three patients were reading or napping while they were being infused. The first thing my nurse did was weigh me, since Remicade is administered according to your body weight. After getting some more information about my medical situation, she hooked up my IV and I started getting infused with a steroid (I think it was hydrocortisone), which is used to reduce one’s chance of having an allergic reaction to Remicade. Then the Remicade was infused, slowly at first (so that if I had an allergic reaction, there wouldn’t be so much in my system), then faster. As I was being infused, I read a book (The Kite Runner – fantastic!!) and two nurses checked my body temperature, pulse, and blood pressure every half hour or so. Once the full dose of Remicade had been infused, I had to wait for an hour, again to make sure that I wasn’t having a bad reaction (watching for signs like itchyness, hives, or flushing). I felt fine and headed back to work afterwards.
My next infusion is two weeks after the first one, then another four weeks later, and from then on I should be going regularly every two months. I’ll also need to continue with the monthly blood tests, to make sure my body is tolerating the Imuran and Remicade. I’ve been feeling pretty good the last couple of days – I really hope these treatments are starting to work!
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.