Saturday, February 7, 2009

The heartache of a belly ache

There is little that is more frustrating than feeling well for several weeks and starting to become hopeful, and then once again experiencing pain. I thought that just maybe I was in the clear for a bit. A nice little reprieve from the belly aches that left me in a fetal position on the bed. On Tuesday night (the same Tuesday where I proclaimed to my GI I was feeling “great!”) the pain came back. Each night since it’s been there, taunting me, bullying me and reminding me what it feels like to be sick.

And every night it's a series of the same questions and half-answers: "If I go on Remicade will I be able to afford it if something happens with our insurance coverage? (As one doc put it, "Remicade is hideously expensive.") What happens when we want to have a kid and I can't stop the medication?" And then there's surgery, which, frankly, often only buys you so much time until you'll need another surgery.

Remicade is a biologic infusion drug. You get it in two-hour IV infusions at your doctor's office and the drug shuts down your hyper immune system. If you stop the drug, you often cannot take it up again as your body produces antibodies to it and rejects it. There has been no long-term testing on Remicade, and certainly none on pregnant women.

Resectioning surgery is when they remove a diseased part of your intestine (anywhere from five or six inches to several feet) and attach the two good ends back together. Crohn's sufferers often experience problems at the resection site (infection and inflammation) and often need repeat surgeries. This becomes a real problem when you run low on bowel.

So what can you do? I choose the very un-heroic path and wallow in a sad bath of self-pity. "What about my MBA?! How can I live with this for 60 more years? What will work think? What if we can't have kids? What if we do have a kid and he or she has Crohn's?!" and all of that.

I have come to the following conclusion: I do not have best disposition for a chronic disease. I can't "look on the bright side." I worry. I'm sometimes morose. I eat all the wrong things (delicious Chinese last night - chicken with string beans and house lo mein - cinnamon-y oatmeal raisin cookies Matt made today). A true Crohnsie would eat like a carbo-loading good girl: all low-residual boring foods and all a shade of white or brown (rice, potatoes, pasta, bread).

So Matt and I are deciding what route to take: go for the super-duper meds with scary side-effects (cancer?!) even though I want to have a child in the future or go for the surgery (which will hopefully buy me a few years -- uh em, child-bearing years -- before it all goes to shit again), and then try the souped-up medication. I don't want a gaggle of kids (don't get me started on that mother of 14 in California) - just one. But - I'm barely 27. I don't think it's selfish to put me first, instead of a child who isn't even here. But the wrestling with it never ends. And there is no right decision, nor wrong one. There are only choices fraught with uneasiness.


  1. Hi Kathryn!

    I'm a 20-something working girl with Crohn's too! *yay us!*. Your Mom actually told me about your blog when she emailed me about my own Crohn's blog ( It's nice to find another Crohn's blogger kicking around- I've added a link to you on my site. :)

    I'm sorry to read that you're not feeling well! It's scary to have to listen to all the 'options' that all seem to be equally bad. Before you jump into something drastic like Remicaide or surgery, have you talked to your doc about something like 5ASA, steroids or other less drastic drugs? What about diet? You may be able to get mega relief from something as simple as avoiding spicy and fibery foods. (I know you joked about not being like us bland-food folks- but if it helps you avoid surgery- it might be worth it!).

    Anyway, I hope you feel better soon. Drop on by my blog once in a while. I'm looking forward to following your own bloggy adventures!

    ~Bright Side

  2. Hi Bright Side,

    First off, I'm sorry my mother is contacting innocent bloggers! Ha. And thanks for the add of my blog on your site; I just read yours and will certainly return the favor! ;-)

    I have another appointment with my GI next week: I've been reading about Humira, etc. Perhaps that may be an option. I've been on a number of meds - I just don't think steroids are a real solution (and I've been on them before). I've been on Pentasa for the last few years. I have to admit, I wasn't taking my meds a lot this past summer (I was feeling pretty good! Pathetic, I know.)and it landed me in the hospital with a big abscess and just some pretty bad inflammation. The docs were able to treat it medically (yay!) but now the pain is back and my terminal illieum is in bad shape. So....I'm at a loss here! I don't think there are any right answers. I do avoid anything spicey and acidic and some other triggers (caffeine, sugar substitutes) but it's true, I do eat many things I probably shouldn't. (I'm one of the very few Crohnsie's who HASN'T lost weight!!) Thank you for visiting and reading!


  3. Kathryn, What's this "Ha" re. contacting innocent bloggers?! I'm sure bloggers appreciate being contacted with an occassional comment--because then they know they have a readership of their bloggy wisdom that is floating about in the blogosphere! And I am a seeker of such chronsy knowledge. I've bookmarked several chronsy blogs. I will read all of them; I may contact some of them. Maybe you'll know about it, and then, maybe not. So there! Mom