Hello, friends.It has been not even a whole month since GUTS has really opened for public viewing but the viewership, response, and contact from enthusiastic contributors has been more than I could have hoped for, thus far. I’ve gotten to develop some fun content and hear from some amazing people who fight disease everyday. Here is to a new year and to keeping the train a-rollin’ on!

In other news, here is an update from myself about life with IBD:

2, January, 2017 – Stuck in the Predni-Zone

So, it has been a long and winding road for my Crohn’s Disease the past months. Since the summer, I have gone through several massive life changes, largely in part to the condition of my health. Back in June, around the time my lease was ending in Blacksburg, Virginia, I was still working my previous laboratory position. This was at an institute I had  been working at for many years. In the years during that time after graduating from University, I had a bunch of battles with my Crohn’s. I could’t seem to shake it. So many vicious flares, new doctors (a couple I just couldn’t seem to see eye to eye with), and a constant fatigue that seemed to follow me around like a dark storm cloud everywhere I went. My lease was ending and it struck me that I would have to make a hard decision to benefit my health long term. It was short notice, but I decided to leave my job and move back to northern Virginia with my family temporarily to focus on getting my Crohn’s to a better place. It was often extremely stressful and required an unmatched dedication to the lab, but I loved Inflammatory Bowel Disease research and the people I worked with. It pained me to leave them behind. Ultimately, I knew that I was ignoring major issues that could cause me to get serious intestinal surgery if gone unchecked, and I was never going to fully commit to making myself better. There could be no competing priorities in that regard. And for my work at the lab, I would not be able to live up to the rigor of the research and required day to day excellence expected of the people who work there. I was, often times, a zombie walking the halls of the institute. I would let my colleagues down and hold them back in the state I was in. 

Next thing I know, I am letting my boss and mentor know that I was going to have to take my leave, began training others on necessary management responsibilities of the lab, packing up my maroon Honda CRV (Virginia Tech colors even when I drive, Go Hokies) and heading back to Northern VA. During the next few months, I rested, hid from much of the world, saw doctors, got prescribed LOTS of drugs, and asked myself “where do I go from here?” Well, after a few months I managed to get myself to a state where I felt I was healthy enough to jump on job offers and stop bothering my parents since I am a grown-ass man. Eventually, I started my current position with a contract research organization coordinating large molecule pharmaceutical studies and I accepted my offer to start a Masters at George Washington University. So, life has been getting back on track. The problem is, I have been taking Prednisone in my therapeutic regimen. 

Since July. 

That is 6 months on Prednisone. I was supposed to wean off it quite a while ago but I can’t seem to find myself feeling well enough without it.

I’m stuck in the Predni-Zone…

For those of you that are not familiar with prednisone, it is a steroid that is used by millions of people with inflammatory diseases to get their problem under control when it is severe. Most people with Crohn’s have a complicated relationship with prednisone. It often gets the job done, keeping you out of the bathroom or making your abdominal cramps disappear, but it has side effects like no other. In the long term, you really don’t want to deal with that crap. It is bad, believe me; I am a pred-vet. So now, I have to find a therapy that will get me out of the vicious cycle. But it is not easy. I have a strong aversion towards anti-TNF biologic use (i.e., Humira, Remicade) and the recently approved Stelara gives me similar discomforts. All of the sudden my options seem…limited. I am already taking Imuran with my pred, and it is just not enough. After talking with my GI, I will be looking potentially into getting involved in the anti-MAP antibiotic clinical trial and see how that works for me. I am not high on long term antibiotic use as a treatment approach but I am willing to say that it concerns me less than what I believe are massive unknown implications of biologic use. We’ll see…

Until then, thanks for reading my IBD journal update everyone and I appreciate you all coming to the site. I will update again soon to discuss where I have gone to try and escape the horrid Predni-Zone. Make sure to check out other articles on the site, read stories by our contributors, and share or comment on anything that resonates with you.

All the best to you and yours,

CH

 

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