Thursday, March 19, 2009

A Crohnsy Update at 5 am

I asked my new surgeon at the University of Pennsylvania what he sincerely recommended for me if, I, say, where his sister. After going through my medical records (which I beautifully collated into three Xeroxed bunches with cover pages: "CT Scan History", "Colonscopy and Small Bowel Series History" and "GI / Surgeon Dictated Letters" - I am the perfect patient!) he said he would go on Remicade. "We want a child in the next couple years" I counter. He breathes out, looks at us, and says, "That really puts a wrench in things, doesn't it?" Well, duh, yes.

And that was yesterday. Two doc appoints down, three to go in the next two weeks. I met with this new surgeon because he does bowel reconstruction surgery laproscopically (though there still is about a 4" incision but not nearly as ghastly as the vertical cut of an open surgery).

On Tuesday I met with my GI. I'm having some new symptoms (constipation-like symptoms) which is, to say the least, very odd for a Crohn's patient. Pushing to have a bowel movement is something very foreign to me. "We have to see what's going on in there," she said. "I can fit you in for a colonscopy in two weeks." "Great!" I say, and I mean it. Who says great when they have to get a colonscopy? In truth, I don't really mind colonscopies. I mean, the day before is a real bitch, but the procedure itself is sleepy bliss. (Heck, after weeks marred with countless bouts of insomnia some sleep sounds lovely!)

She's worried I'm not feeling better. "I'm worried about a blockage. I don't like that you're having trouble having a bowel movement." I don't like it either; I all of the sudden understand all those Metamucil and FiberOne commercials.

I also learned I gained 15 pounds in my insomniatic, immobile state. I mean, I know my muffin Sundays didn't help, but COME ON! GIVE ME A BREAK HERE! I swear I am the only person with Crohn's Disease alive who gains weight. I silently curse at God: if he's going to give me Crohn's, can't he lighten up on the other stuff? So now I have to be fat AND have a chronic disease? I think back to all my sleepless nights when I was so hungry I had to eat an extra meal at 4 am. I know I'm half to blame, as I firmly believe there is nothing better than tortilla chips and salsa. But, conversely, I can't have copious amounts of fruits and veggies: my body can't process them well, so yummy carbs have become a dietary staple.

And my gym membership has been "frozen" since the fall. I went back for a very short stint in February, but even after the low-impact elliptical, my abdomen radiated achenes, screaming at me to stop. Even taking Penny down to the trail for a 3-mile walk hurts (I know this because that was exactly what I did after I was told I gained all this weight). I told myself I'd walk it off; easier said than done. (Walking on the trail was delightful, though. It was the first nice Springy day we've had; a crisp 62 degrees and sunny. Penny was exuberant as she pulled on her leash to go further and I listened to Hem as I happily obliged.)

Next week I'm meeting with another GI for a second opinion, and the week following I have my colonscopy and a meeting with my current surgeon, whom I implicitly trust but who doesn't practice laproscopic surgery. I feel awfully stuck; I am having pain, but for the past week or so it hasn't been curled-up-in-bed, "oh kill me now" pain. My GI said on Tuesday maybe I am not a surgical case yet (again, unlike many other ailments, with Crohn's you want to avoid surgery as much as possible). But then we're back where we've started; I have pretty much exhausted all the other meds except for the real big "bad for baby" guns. Suddenly I wished Matt and I got pregnant years ago and had a shot-gun wedding (I know, I know, totally white trash but it would solve a lot of our problems right now).

So my GI did the only thing we could at the moment: she upped my Pentasa dosage. We both don't think it's going to do too much, but who the heck knows. (New total current daily pill count: 12!).

I never thought that my first year married would be like this. (Not that I thought it would be bodice-ripping passion or anything - and what is a bodice really anyway?) I just never thought I would eat Crohn's, sleep Crohn's, breathe Crohn's, think Crohn's, all day long. It's been a long and slow realization that this is chronic. I will have this forever, and I have to suck it up and deal.

"This must be very stressful for you and your husband," my GI said as I layed on the examination table and she pressed on my abdomen. "Yes," I said. "It definitely is."


  1. Kathryn, My heart goes out to you. This is certainly not fair to be dealing with something like this during your first year of marriage. I'm so grateful for your blog. It's good to be able to know what is going on with your health. Thanks for sharing. Cyndy

  2. Hi Cyndy,

    Thank you. I wish I could be more stoic in my blog entries - more "lady like" about the whole ordeal - and certainly not complain as much. But I'm pissed off. And I'm just so tired. Writing in this blog - however silly it is at times - is theraputic. I love knowing my family and friends are reading. Thank you again.