[image from here]
I had my second colonoscopy yesterday. As I mentioned last month, I’ve been feeling really good for several months. While it’s great to not have any symptoms of Crohn’s, sometimes symptoms and intestinal conditions don’t correlate, so we wanted to see how my intestines actually looked. And it was completely worth the annoyances that come with a colonoscopy to find out that my intestines looked perfect – no signs of Crohn’s! I’m officially in clinical remission and hope to stay that way for a while! I am so grateful for my awesome gastroenterologist, and for everyone’s support while I was feeling sickly!
[image from here]
I haven’t posted about Crohn’s lately because my intestines are happy! I’ve been feeling really good almost all the time since late September! Wooo!
Hopefully this will continue! I have a colonoscopy scheduled next month to check if everything is looking good inside since sometimes symptoms (or lack thereof) don’t correlate to the actual conditions of one’s intestines. But I definitely feel tremendously better than I did this time last year.
(Yes, the above picture is plush intestines, with a little appendix included down there on the bottom left 🙂 I never thought I’d be able to tag a post for “Crohn’s disease” and “cute,” but here it is!)
While I was home for Thanksgiving, my parents gave me an issue of Crohn’s Advocate, a little magazine full of advice for people with Crohn’s disease. The issue they gave me focused on travel tips for folks with Crohn’s, and although I had already figured out most of the helpful hints the magazine described, I always like to read about other people’s experiences with Crohn’s. It’s nice to know that I’m not alone in the funny little things I do in order to make my day-to-day life mostly normal, and I also enjoy seeing people who won’t let the disease keep them from being active and taking on the world. And this quote from Frank Fritz (a Crohnie from the television show American Pickers) really resonated with me:
Crohn’s is like a duck. Ducks look calm, floating quietly on the surface of the water, but underneath they are paddling like crazy. It’s the same for people with Crohn’s – on the outside you can’t really tell, but I’m working really hard to stay in control as much as I can.
For more information about Crohn’s Advocate magazine (you can get a free subscription if you live in the US!), or for tips on living with Crohn’s, visit crohnsadvocate.com.
Earlier this week, I had my first trip to the emergency room for Crohn’s-related issues (actually my first trip to the emergency room for any reason…I’ve been a lucky lady). I’ll begin by saying that I actually had a good experience at the emergency room, and am glad that I went. And I’m feeling better now. So here’s the story… Continue reading →
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!
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.
This post may verge into TMI land for some readers, but I’ve found other people’s personal accounts of inflammatory bowel disease-related experiences helpful and sometimes comforting, so I am sharing mine here.
If you’re lucky, you won’t have to worry about your first colonoscopy until you’re in your 50s or 60s and need to start getting screened for colon cancer every five to ten years. But Crohns-y me had my first this week, and I can look forward to many many more over the coming years.