I've been hospitalized three times in the last twelve months. I have to let you in on a little secret: I'm over it. For the first time in nearly 20 years of suffering with Crohn's Disease, Crohn's has defeated my attitude. People have always told me I'm so positive, and they don't know how I deal with it. The answer is you just deal with it. What's the alternative? But the last year and in particular the last eight months has wreaked havoc on my body and my positive psyche, and I'm not amused.
I had an abscess drained in October, and the plan was to keep it draining until the abscess was healed. It's now June, nearly eight months since that procedure, and the abscess is still draining. It's as delightful as you might imagine. I've discovered things I never thought I'd know, like the best gauze for my constant abscess bandage is the 4x4 squares at Meijer. Tuck that away for future reference in case you need a constant supply of gauze.
Funny side story: a few months ago I wrote down a store list, and my husband went to the grocery store. On the list I wrote "4x4 gauze". My husband came back with four boxes of small trash bags wondering why I'd put that on the list. I laughed really hard. In his defense I do have the handwriting of a serial killer.
Despite hilarious grocery store mishaps, the abscess is discouraging. It's not getting better. I'm under the care of two doctors: a colorectal surgeon in Lansing and my gastroenterologist in Ann Arbor. The consensus is that it's best if the abscess gets cleared up with medication. Surgical options have been casually tossed around, like we're dipping our toe in the water of the surgery conversation. My surgeon said options include having an illeostomy for a few months to let the abscess heal or filling the fistula tract that's causing the abscess. Neither surgical options are ideal. The problem with surgery is that each surgery adds new scar tissue and possible future complications.
For now we've doubled my dose of Humira (weekly injectibles), and I'm taking antibiotics indefinitely. And I'm frustrated because what if it doesn't work? What if this is my new normal?
Back in January I had hopes that I'd start running again. I've run two 5ks this year, not the running year I'd planned for. Maybe it sounds silly to miss running when it's so challenging and aggravates the abscess, but I miss it. It's my stress relief and such a part of who I am. Not running makes me feel like I'm missing a limb. Maybe more like an internal organ (ha! Crohn's joke!)
I started swimming again a few weeks ago, and it turns out even that is an uncomfortable form of exercise. The problem is the movement rubs against the abscess despite the lower impact of the exercise. Barely working out means my body has changed. I haven't really gained much weight, but my body is different. I don't feel strong. I feel very frustrated.
I know it could be worse. I have friends struggling with cancer and other terrible illnesses, and they do it with a grace that I could only hope to possess. Being physically sick the last eight months has been rough. Letting my frustration get the best of me is even tougher.
Maybe I won't be able to run again in any real way for a while. Maybe I'll have to learn who I am without a rigid exercise routine. Right now I feel so much guilt for not being at the fitness level I'm used to, and I know I need to let that go. I need to heal.
If I'm being totally honest for the first time I'm scared. I'm worried that it won't heal. I'm worried about other complications like kidney failure. I'm worried that this is the beginning of Crohn's Disease winning, and I can't fix it. I don't know how to make it better. I'm worried that my son will think of me as a sick mom. I'm worried that my husband will grow weary of having a sick wife. These things have been keeping me up at night.
Right now I can't fix anything except my attitude. I'm making a conscious effort to think about my broken body in a more positive light. I'm trying to give myself a break if I don't look exactly the way I want to. This is still a runner's body, but right now it needs that energy and focus I've put into running for so many years to go into healing. The miles will be there when my body is ready.