Wednesday, December 26, 2007

Wherein I Talk About Traveling With Crohn's Disease

Many of you already know that when I was 19, a surly gastroenterologist with no bedside manner whatsoever diagnosed me with Crohn's disease. The diagnosis was actually welcome news to me, as I'd spent the previous four months or so eating a diet of white rice and water, as it seemed to be the only food that didn't, uh, move right through me. I'd lost about 15+ pounds in those four months, and for what was my then-quite thin frame, that was a lot of weight to lose. It was enough that people, my boyfriend at the time included, would try to entice me to eat that which I knew I could not digest. I didn't know WHAT was wrong with me exactly, but I knew for certain that something was wrong, and that I was not anorexic.

I have lived with Crohn's for 10 years now and have been very, very lucky. I have never had surgery, and I spent only the first two years after my diagnosis on and off the steroids that I would now refuse. (Boy did I gain that 15 pounds back, and then some! Have you SEEN these hips that I sport?!) While I still watch what I eat (absolutely no spinach or corn, avoid the spine of most lettuces, keep a low-fat diet, avoid fried things), I have been lucky that I have been ABLE to eat. I eat regular meals, I obviously enjoy food a great deal (there's those hips again), and I haven't, knock-on-wood, had a serious flare-up since my initial diagnosis. I have had bouts of uncomfortableness, but nothing that rendered me mute from pain, crouching on the floor of my dorm room, as I did night after night in 1998.

In November 2005, at the advice of my most favorite GI doctor, I went off all of my meds. This was a huge triumph for me, a total coup, as one of the most debilitating and annoying things about my diagnosis was the Pentasa -- a drug that helps control the inflammation, but requires an irritating 16 pills a day. The second most debilitating thing about my Crohn's diagnosis is that I still don't know how it will affect me when I try to get pregnant, a fact I think about too often. The research isn't good (surprise, surprise), in that there hasn't been a whole lot of research. Most of the information I've learned about it, both from my own physicians and the terrifying amount of information available online, gives the 30-30-30 rule for Crohn's patients who are also trying to conceive: 30% of patients will get better, 30% of patients will get worse, and 30% of patients will stay the same. Getting worse, obviously, is to be avoided, as Crohn's patients who are flaring during their pregnancy suffer an increased risk of miscarriage. Andy assures me that the 30-30-30 statistic is a doctor's way of telling me "we have no clue what will happen to you, so here's some information that's not really meant to be reassuring, but is simply meant to be information." Ah. It's so clear now. Riiight.

So I went off my meds in November 2005 because, as my doctor and I thoughtfully concluded, I was not pregnant, nor was I intending to become pregnant any time soon. We agreed that going off the meds would be a good experiment, since, if I could tolerate it, it would be nice to be off the meds when I was actually attempting to become pregnant.

For the first several months, I felt great. I wasn't taking any medications for Crohn's at all, and I was eating basically what I wanted to eat, still avoiding the high-fat foods and the ever-evil spinach. But a few months after we moved to Pittsburgh, I started to experience some symptoms. They were typical symptoms, nothing too awful, but they scared me enough to tell Matt. And Matt was scared enough to encourage me to find a GI in Pittsburgh. My GI (the first female GI I'd had!) wanted to put me on meds right away, but I told her that I'd rather know for sure that I was flaring before I took meds, and even though this meant yet another colonoscopy, I really wanted to know for sure before I went back on meds. (As an aside, I've had four colonoscopies in my short life! So if you're over 50 and you haven't yet been checked for polyps in your colon, you will get no sympathy from me. Go get yourself a goddamn colonoscopy and get checked for polyps, since colon cancer can be detected early!) I was also confident that the colonoscopy would show that I was simply overreacting, that my so-called symptoms were a manifestation of how much I hated Pittsburgh, and not a manifestation of how much my intestines hate me.

Of course, if you know me at all, or you know even a little bit about Crohn's disease, or even a little bit about mental health, then you know that sometimes, when you hate something in your life, your body decides it's not too thrilled with you either. In short, the colonoscopy showed angry and ferocious ulcerations in my terminal ileum. So the pain in my belly wasn't just caused by the pain in my psyche, but it did mean I'd have to go back on meds.

I was understandably sad. And also a lot more vocal about my discomfort. The final admission of the fact that I do, actually, suffer from Crohn's disease, always occurs when I tell my dad how I'm feeling. The mixture of sadness and concern in his voice is something I'd always like to avoid, so I put off telling him until I feel that I absolutely have to. I use my telling him as a measure of how strong I think I am. If I can tell my dad that I'm sick, then I can deal with the fact that I'm sick. So I started back on my meds (Pentasa now comes in a form where you only have to take 8 pills a day) and braced myself for that phone call. My dad, obviously concerned, said, "oh honey, I'm sorry." And then, almost without missing a beat, "what about your trip?"

It hadn't occurred to me that my Crohn's would affect our trip. That was probably partly because I didn't even want to stop to think about whether it would affect our trip, but mainly because I generally labor under the misbelief that my Crohn's will miraculously disappear just as quickly as the flare presented itself. Of course, this is never the case when you have a chronic illness. Otherwise they wouldn't call it an illness, or even better, chronic.

I talked it over with Matt. I didn't want the Crohn's to affect our trip.

"We're still GOING on this TRIP," I informed him, sounding like that 4-year-old brat he DIDN'T fall in love with.

"Yes, of course we're still going on this trip," he said. "We just need YOU to talk to your doctor about the fact that we're going on this trip. She can probably help us."

Duh.

In between that conversation and talking to my doctor, I talked to everyone else. Julie was worried I'd get really sick, and confided that Cris was really worried too. Andy echoed Matt's advice about talking to my doctor, and other Crohnies (friends with Crohn's) expressed concern. The Internet told me that I could definitely travel with Crohn's. To France. My dad was convinced I'd probably literally crap my brains out, a concern I expressed to my physician when we met.

"You're not going to die," she told me. "But don't be an idiot."

Did I mention that I like this new doctor? She's matter-of-fact and interesting. She also likes to tell me all about the science behind Crohn's Disease and Crohn's treatment. It makes me feel like she thinks I understand what she's talking about. I appreciate this.

Don't be an idiot. This is good advice. Generally, but specifically here, where the food is different and the water is not potable. So what did I do to prepare for going on this trip? Well for starters, I got all the vaccines I'd need. I didn't get any live vaccines, since Crohn's can leave you somewhat immunosuppressed, and it seemed unwise to inject myself with something that was alive and crawling. I filled my Pentasa prescription so that I'll have enough Pentasa to last me for the entire time we're gone, with a little extra for good measure. I had a doctor I know write me prescriptions for things that could go wrong with my intestines, and I double-checked those prescriptions with my GI doctor. I had a long conversation with my GI doctor about the trip, and she reminded me that as a Crohn's patient, I will most likely be quick to assume that anything that goes wrong or hurts is related to my Crohn's. She reminded me that everyone who travels in a country where the water isn't potable has a belly ache from time to time. She reminded me not to be an idiot. She elaborated on this to mean that I shouldn't under any circumstances, drink the water. I can eat street food, but only if it's piping hot. In India, I can eat vegetarian street food but not meat, and in the rest of Southeast Asia, I can probably eat whatever. I should stay away from vegetables that would ordinarily look hard to digest, so basically, things that look like spinach. And I should try new foods, take my meds religiously, and be honest with myself about my body.

So far, so good. I have had a belly ache from time to time this week, but it hasn't been anything that's kept me in the bathroom for longer than usual. I've obviously been trying all kinds of new foods, but I'm staying away from things that look like they'll hurt me. I have only had bottled water to drink. Well, bottled water and beer, but whatever.

In the months to come, I hope to keep you guys updated on the progress of my tummy. Not because I think you're curious, but because I want other Crohnies out there to know that it IS possible to travel to Asia with Crohn's disease. It's possible to spend 31 hours on a plane with Crohn's disease. It's possible to carry around a heavy-ass backpack with Crohn's disease. It's possible to eat new and interesting food with Crohn's disease. And so far, it's possible to be diligent about taking your meds, and possible to find a bathroom when I need it, even when though I don't speak the language and no one in my host country has even heard of Crohn's disease. I don't expect my Crohn's not to be present here; it is, after all, a part of who I am, a chronic part. But I expect it to be as present as it usually is, which is to say that I live with it, and I respect it, but I respect the rest of myself just as much if not more, and I will do my best not to limit my experiences here because of my disease.

4 comments:

Gwen said...

Thanks for the interesting post. I've sent it on to Scott, and to Allan. As always... wishing you wonderful, safe, informative and healthy travels!
Gwen

Katy H said...

I'm really happy you're sharing this part of your trip along with everything else.. It makes me worry less about you. :) I'm glad you're not letting it keep you from all this adventure!

Cris said...

Always remember: Cris worries about EVERYTHING (and talks about herself in the third person). Heck, allow me to worry for you, I'm excellent at it.

We love you!

Unknown said...

Hiya just a quick question but what medication do you take for your crohns? I also have the same condition and I'm wanting to travel round Asia for a year in January 2017 my doctor has put me back on tablets after having a resent flare up and it seem the best option for my travels but it requires me to have a blood test every 2 months and I don't know how that would work out there. Is there any help and advice you can offer that would be great. Thank you Charlotte xxx