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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My last day in the hospital

I can’t believe it, but I’m being discharged this afternoon! I can’t wait to see my husband and kids. I can’t wait to sleep in my own bed. I can’t wait to get back to normal life.

I’m going home with my PICC line and a CPN (central parenteral nutrition) bag. A home care nurse will visit our house tonight to show my husband and me how to administer the CPN and antibiotic intravenously. In addition to the CPN, I’m on a clear, liquid diet until I meet with my GI in two weeks. He will do a CT scan to ensure the inflammation has settled, and if it has, he’ll remove the PICC line and I can slowly reintroduce solids into my diet. For now, all I can think about is donuts.

When I reflect on the week I spent in the hospital, I think about what I’ve learned. I’ve learned that I need to stop putting myself last. I walked around in pain for a week before I finally did something about it, and guess what? When I got to the hospital no one handed me a medal for suffering. I have to stop worrying about how my illness might affect the girls’ schedule or our family’s weekend plans. If I’m not healthy, I can’t support my family, so I have to do what is necessary, and sometimes that means taking time out to receive the treatment I need.

I’ve learned that my illness is serious and I have to start treating it that way. I need to stop thinking that I can just take a pill and everything will be okay. This is about more than just medication; this is a lifestyle change. I have to manage my Crohn’s disease on a daily basis and recognize that this affects my entire family.

I’ve learned that my family can function without me, but that doesn’t make me irrelevant. This has been a tough lesson for me to learn. I pride myself in organizing play dates, preparing the girls for Crazy Hair Day, and keeping my family on schedule. However, this past week my husband handled everything. I’m sure Mackenzie’s hair wasn’t done each morning, they ate McDonald’s for dinner, and who knows what else, but they survived. Instead of focusing on how life moved on without me, I need to appreciate that I have a husband who can pick up my slack when I need him to, and I have two kids who are resilient enough to roll with the punches.

I’m thankful that I allowed myself this week to receive treatment, rest and recoup, and I made a promise to myself that next time I won’t wait a week before seeking help. Sometimes I have to come first.

 

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.