An ode to solid food

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.

 

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Day 5 and counting

It’s Day 5 of my hospital stay and I’m waiting for the doctors to drain the abscess.

In addition to the abscess, we’re managing my nutrition. I’m still not allowed to eat or drink anything, and today they put in a PICC line. If you, too, hadn’t heard of a PICC line until now, it’s a catheter inserted in your vein so that you can receive medicine or, in my case, nutrition intravenously.

Despite my anxiety, the process was quick and easy. Two health care providers did the procedure right in my hospital room. Everything was covered and sterile, and they gave me some anxiety medicine right before they inserted the IV. I didn’t feel the catheter follow my vein, and before I knew it, it was over. It looks like a large IV in my lower bicep with two “prongs” hanging out, one for medicine and the other for nutrition. The IV is heavily taped so it stays dry and sterile.

I’m currently slated to receive the IV nutrition 24 hours a day, and we’ll slowly cycle down to 18 hours, 16 hours, and 12 hours a day, and then they’ll discharge me. When I’m discharged, a home care nurse will come by twice a week to draw blood to check my nutrition levels and to check the IV.

In the midst of all this, my blood sugar dropped and I was permitted three sips of apple juice. That’s right, three. They actually counted each sip. I’ll leave you with that.

 

 

 

Surprise hospital visit

To say this past week has been overwhelming is an understatement. I went to the emergency room last Thursday because of lower abdominal pain that was so severe I couldn’t walk upright. I knew that it was related to my Crohn’s disease, and I thought I would be prescribed a steroid and sent home. Instead, I was admitted to the hospital.

After blood work and a CT scan, I discovered that my bowel was severely inflamed and I have an abscess on my right side that has created an infection in my body. I also have a small fistula. (If you don’t know, a fistula is when the ulcers within the intestine turn into tracts and create an abnormal connection between the intestine and another part of the body.) I was given antibiotics for the infection and after three days, I was transferred to Johns Hopkins Hospital.

When I got to Johns Hopkins, a team of doctors discussed treating the abscess with antibiotics, draining it, or surgically removing it. Since it’s not a good idea to perform surgery during active inflammation, they’re currently focused on draining the abscess; I’m waiting to hear when this will happen.

In the past four days I’ve been poked and prodded for more reasons than I can remember. I haven’t been allowed to eat or drink anything since I was admitted to the hospital, and I’m hungry, like VERY hungry. Most importantly, I miss my girls. I miss them most at night. I miss giving them a bath while singing songs and watching them play with toy ducks and seahorses. I miss towel drying their hair and helping them pick out donut-covered pajamas. I miss the smell of Mackenzie’s apple-scented hair detangler. I miss curling up with the girls in bed and reading a good book. And I miss holding hands as a family and praying before bed time. This is when I feel like the disease is taking something from me. This is when I feel like everything around me keeps going while I play catch up.

Thank God for my husband, here with me now, asleep in the uncomfortable chair next to my bed.