Month: March 2016

My last day in the hospital

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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.

 

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Best day ever

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Without a doubt, today has been the highlight of my hospital stay, and that’s all thanks to my spunky 2 1/2 year old, Mackenzie. My husband brought her to visit for the day and kept the baby, Lexi, at home.

I can’t say enough how much seeing Mackenzie lifted my spirits. She climbed into my bed and we read all of the Dr. Seuss books she could fit in her bag. We walked through much of the hospital, and everyone stopped to talk to her. I was so proud to show her off. Mackenzie is very independent and insisted on walking next to us, without holding our hands. Instead, she walked with her hands stuffed in her jean pockets, just like her Dad. When we got back to my room, I could tell she needed a nap, so I read to her until she fell asleep. We took a nap together in my bed, and for that hour things felt normal again.

When it was time for her to go, she told me to put on my shoes so we could all go home. I explained to her that I couldn’t go home until I felt better, and she seemed to accept that answer. It’s ironic that sometimes children can accept things that adults struggle with.

After they left and before I had time to mope, my doctors gave me some good news. It looks like the antibiotics are working on the abscess so there’s no need to drain it. And since they’re no longer preparing me for that procedure, they switched me to a clear, liquid diet. Chicken broth, Jello, and apple juice never tasted so good 🙂 Again, best day ever.

 

Day 5 and counting

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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

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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.

 

Yes, I’m a Crohnie

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I’m usually preoccupied with what my Crohn’s disease feels like, but lately I’ve been consumed by what it looks like. I look in the mirror and I see a woman who looks sick. My clothes don’t fit; they hang off of me. I don’t like to look at myself when I’m getting dressed because I know what I’ll see, a skeleton. I don’t have enough color in my face; people often ask me if I’m tired. And I’m always carrying around my cell phone and rushing back to my desk at work in fear of missing a phone call from one of my doctors. Even now, as I type this, I’m staring at the unforgiving black screen on my cell phone, waiting for my doctor to call and set up my Remicade infusions.

I call-in sick to work when I can’t get out of bed because of the pain, and I leave work early some days for doctor’s appointments. And eventually people start to ask why. Some people simply share their concern, “Are you okay?” Some people get right to the point, “You’ve lost a lot of weight. What’s wrong with you?” And some people have no concept of what’s appropriate, “You’ve lost too much weight. You can stop now.” Sometimes I share what I’m going through and sometimes I’m intentionally vague. And yet, however inconvenient these questions may be, they got me to thinking. If I don’t start talking about what I’m going through, how can I expect people to understand?

So little by little, I started sharing my struggle. I talked to a teacher at my daughters’ school who has ulcerative colitis. She has become a great support for me each day when I drop off my daughters. We talk about how we’re feeling, what medicine we’re trying, and how much we miss coffee. Then she encouraged me to join her in the Take Steps for Crohn’s and Colitis walk this summer. I was hesitant at first because I knew this meant fundraising, which meant sharing why this cause is so important to me. But I decided to put on my big girl pants and register with the team, and I’m so glad I did. Since then, I’ve built relationships with other people suffering from an inflammatory bowel disease (IBD) and I don’t feel alone anymore. I’ve learned to be brave and say, “Yes, I’m a Crohnie”.

Creating this blog is my next step in sharing with others my experience with Crohn’s disease. It wasn’t easy for me to create this blog and to commit to putting it all out there, but if I can let someone else know that they’re not alone, then it’s all worth it.