Thursday, November 5, 2015

The "Good", The "Bad" and The "Ugly" - Treating Crohn's Disease (Part 2)

For those who haven't read part 1 of my epic Crohn's treatment story, you can go back and read it be clicking HERE.  An extremely short recap: I had been through 8 months worth of different combined therapies and nothing had worked to control my Crohn's Disease.

Little did I know that my journey was really just beginning and it was going to take a turn for the nasty. In February 2013, I had my colectomy surgery (removal of the colon/large intestine/large bowel), donating the organ to research in hopes of finding a cure so others don't have to go experience my story for themselves. I'm planning on writing a completely separate post about the colectomy, so I won't say much about it here other than we were all hoping that this was where the story would end.

It was about a month after my colectomy when I knew that things weren't going well. I was still passing a lot of blood, having low energy problems and just feeling plain awful. At first the doctors were wondering if it was just that I was a slow healer from the surgery, so we gave it a bit of time. By July/August we knew that it wasn't just a problem of "not healing" that there was something else going on. Despite my earlier major blood loss from the bleeding, my body always kept up and my blood levels would stay normal (surprising my docs!). Now, my iron was basically 0 so I spent my summer getting weekly IV iron infusions. August rolled around, the doctors decided to go in and take a look at what was going on again, and discovered for the first time that I had inflammation in my stomach and MAJOR inflammation in the duodenum (the first area of the small intestine after the stomach). The doctors said that this type of damage could be seen with Celiac Disease, so I went on a strict (and horrible!) gluten-free diet for 6 months. We bought new toasters, learned new ways of cooking, and tried every type of gluten-free pizza out there without finding one we liked. Not once did we cheat on the diet. But the diet wasn't the problem.

After 6 long months gluten-free, the doctors went back to take another look inside and found that things were even worse than they had been. I could have told them that from how I was feeling! The doctors started me on Humira, another biologic medication designed to suppress the immune-system similar to Remicade that is injected every 4-12 weeks like Remicade. The Humira shots were painful, I'd rather have an injection of just about anything else. But if it controlled the symptoms it would have been worth it! Unfortunately the Humira left me looking like a car-accident victim. I had at one point over 80 bruises on my body. Here's my legs:

I also had sudden cell death on my arms that turned them brown: 

This was still nothing compared to what was to come. We decided that Humira was not the medication for me. 

I spent that summer (2014) as an in-patient at the hospital for the entire summer when my weight dropped way too low. I was put on TPN, which is a form of nutrition given through the IV. The doctors started talking the 's' word again, meaning more surgery. Instead, they decided to try Remicade again. 

From the start it didn't go well, I wonder if it were a sign of things to come. I had a rash, shortness of breath and fever during my first infusion. But we pushed ahead. After my initial 4 doses they found that I wasn't retaining any of the medication as I should be. So they increased the dosage. Then this happened:

At first the doctors thought I was breaking out in hives, the itch was incredible and wearing clothes was extremely uncomfortable. Benadryl didn't take the itch out of it. Benadryl cream burned to put on. As it developed it became clear that it wasn't hives. The hospital gave my mom cream to put on it, but everytime she touched me I would scream in pain and my skin would start bleeding. Eventually dermatologist confirmed that I was in the small percentage of Remicade users who developed psoriasis from the medication. The psoriasis covered 70% of my body and was the primary reason why I was hospitalized for a month. Ironically, Remicade is used to treat psoriasis!

The doctors decided that I needed both a treatment for my Crohn's Disease since we had now gone through everything that was typically used. I had to stop the methotrexate (a form of chemotherapy) injections because they made me violently sick. I couldn't take the Imuran because there was something to do with my genes or blood that said it wasn't a good choice for me. Stelara (ustekinumab) is also used in the treatment of psoriasis but is just now being investigated for its potential usefulness in treating IBD. Thankfully, because of the psoriasis, I didn't have to apply for special access to have this medication. Even more thankfully, because of the expense of this drug, the pharmaceutical company gives it to me for free since we would never be able to afford it. I started Stelara this past May. 

Stelara really upsets my stomach, but the injections are a lot better than the Humira injections. Unfortunately, I just recently had another set of scopes done to see why I can't eat, and they've found some new inflammation, so it might not be working to help control the disease. It has been wonderful for my psoriasis though!

I hope that my treatment story highlights the need for more research into treatments and a cure for this disease. Stelara is one of the last options remaining. Another newer medication on the market, Simponi, works similar to the Remicade and Humira, so the doctors feel that it likely won't be as effective for me since I've already tried two medications in that family. There needs to be more research into refractory kids like me. Living with Crohn's Disease is hard enough on a child, but to already run out of treatment options is scary. I will have this disease for the rest of my life. I'm 11 now. If I live until I celebrate my 100th birthday, that's 89 more years of living with this disease. I sure hope that in that time they can come up with more effective treatments so that I, and people like me, can have a break from the "roulette wheel of medicines". 


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