Oh, how I’ve missed solid food. It’s a relationship I didn’t appreciate until my GI tract came between us. If I thought I’d be good at it, I’d write an ode to all the foods I’ve missed these past two weeks. (Obviously it would start and end with donuts.) Now I don’t have to leave the room when my family sits down for dinner, I can enjoy my husband’s cooking. I don’t begrudge preparing a snack for Mackenzie, and I can even laugh about the night I almost licked a peanut butter cup in desperation. It’s amazing how much returning to my regular diet makes me feel like a normal person again.
Clearly, the results of my CT scan on Monday were good. The abscess is gone, which means I can resume an IBD-friendly diet. I spoke with my dietitian and we’re going to cycle down my TPN over the next two weeks and then remove the PICC line. My doctor is setting up Remicade treatments, and I hope to be on the road to remission soon enough.
The surprising news is that there is a fistula forming between my bowel and bladder, which isn’t good. My doctor forwarded my CT scan to Johns Hopkins and I’m waiting for them to determine next steps. Two weeks ago this would have consumed my thoughts, but not now. It is possible that I will need surgery to remove the fistula, but then it’s gone forever; that’s good news. Studies have proven that sometimes Remicade can dissolve a fistula; that’s great news. Either way I have a problem that can be resolved; that’s even better news. I can’t let myself become overwhelmed by “what if”; I have to focus on “what is”.
Recently my GI gave me a pep talk of sorts. He said there are generally two types of Crohn’s patients, those with a mild or moderate form of the disease and those whose disease has begun to perforate, creating complications. He said I need to accept that I’m in the latter group, which means the occasional abscess, fistula, and Lord knows what else, but all we can do is resolve one problem at a time. I realize this might not sound like much of a pep talk, but he reminded me to “be still” and take one day at at time. When I was in the hospital I felt like I had a laundry list of problems and the road to recovery seemed overwhelming. But guess what? I was out in a week with two less problems than I had before. In other words, it might take time, but I’ll get there. And in the meantime, I’m eating peanut butter cups.
Parenting with Crohn's 