Wednesday, November 4, 2015

The "Good", the "Bad" & The "Ugly" - Treating Crohn's Disease (Part 1)

It's been a tornado of 3 years of different treatments for my refractory Crohn's Disease. Sometimes you imagine the doctors sitting in their rounds and spinning a roulette wheel to decide which treatments they're going to do this week/month. When it comes to treating Inflammatory Bowel Disease, the treatments change from person to person just as the type of symptoms do. Some patients are on a grocery list of medications, while others seemingly take very little at all. Some patients may have combination therapies given to them, others might just have one or two at a time.

When I first started with my Inflammatory Bowel Disease symptoms, I was started on every person with IBD's dreaded medication - prednisone. Prednisone is a steroid that works really well with stopping inflammation, but the side effects are often horrible. Prednisone through the IV worked best for me. Whenever the doctor tried to switch me over to the pill form and then have me start to lower the dosage, I would immediately go into a flare (dramatic increase in symptoms). It was usually enough to land me back in the ER. I went from being a really small 40lb kid to 111lbs at my highest. I would have heart palpitations and a racing pulse, intense sweating, at 9 I was starting to grow a mustache (great for Movember but not so much for 5th grade). I was hungry all the time and couldn't get enough food. I'd have these mood swings for no reason. I stayed on prednisone from the time I was diagnosed in July 2012 until March 2013.



To the prednisone mix, they added sulfasalazine, a medication used in the long-term treatment of Inflammatory/Rheumatory Diseases. Unfortunately, I had to stop the drug before really starting when my liver didn't respond well to it. The doctors decided that my body didn't react well to the sulfa based medications and it was time to move on. 

To the prednisone mix they added some antibiotics that have shown to have benefit in treating IBD. At least I didn't react to them, but they also didn't work that well at controlling any of my symptoms. I stayed on antibiotics until they removed my colon in 2013. But they weren't done adding to the mix yet. 

We then took out the "heavy hitters", the Jose Bautista's of the IBD treatment world, Remicade. Remicade is a great drug for the majority of people that need it. When a person with IBD needs to go past the less intense drugs, this tends to work for them in a lot of cases. It's an IV infusion medication which is made using mouse protein. So I am now part Mickey Mouse. Remicade works to help suppress the immune response in my body to change the way some of the immune cells work. It can be given every 4-12 weeks depending upon how well the person responds to it. They added Methotrexate, a chemotherapy agent to further suppress the immune system and to prevent antibodies from the Remicade. I didn't have any problems with the Remicade the first time around, it just didn't work for me. I continued on Remicade and Methotrexate until I had my colon removed. 

We tried a lot of treatments before I lost my colon, and it was all in the time-span of 8 months. My mom wanted to give all the options a chance before we turned to life-changing surgery, and I can honestly say that we gave it all a really good try. It's just that this disease is so complicated to treat and not everyone responds to the available meds or responds in different combos, that it can be just as frustrating for the doctors too. 

I can also honestly say that considering what was to come for treatments, up until the surgery I had things relatively easy. Tomorrow, I share the "Ugly" as my treatment story continues. 

*Always remember that just because my treatment experiences haven't been the greatest, it doesn't mean that you will also have a similar experience. Don't be afraid to try new things, if you don't try all the options you might miss the one that works for you. And if you do get to the point, like me, where you are out of treatment options - always, always, always hold on to hope. Tomorrow there might be something new. Tomorrow they might make a breakthrough. So keep holding on*


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