In March of 2007, I was diagnosed with Crohn’s Disease after my father took me to the emergency room due to the intense abdominal pain and the lack of bowel movements in the previous weeks. It was going to happen eventually I suppose, since my younger brother was diagnosed with it in 2004. For the past 4 years, my Crohn’s Disease has made it a hobby to stick me in the hospital for several days with a flare or increase my depression at just the “right” times. Oh that Crohn’s Disease is tricky!
Since being diagnosed, I’ve been on a wide array of medications. The one that has remained a constant is Azathioprine (Imuran). Currently my dose sits at 225mg a day. I also take Welchol to help with the number of daily trips to the bathroom. I can definitely tell a difference since I’ve been on that, as it has decreased those trips probably by half.
The last time I was admitted to the hospital due to my Crohn’s Disease was December 23rd, 2009. I spent the entire Christmas holiday in the hospital and did not get released until very late Christmas Day (afternoon). It was then and there I became fed up with ending up in the hospital at least once a year due to my disease. I had enough and thought it was time to look at other options.
But before I looked into those other options, on January 3rd, 2010 I made the ultimate commitment to Crohn’s and Colitis awareness. Instead of the better known purple awareness ribbon, I had my tattoo artist create a purple ribbon that looks like intestines (colon). Below it is a semicolon, and that was done because of my best friend. She made the joke that people about people with IBDs having part of their colon removed wondering if it became a semicolon. : ; - get it? The "Because it matters" is because finding better treatments or a cure should matter to everyone, not just patients, but family members as well.
I made a call to University Surgical Associates at the end of January to make an appointment with Dr. Susan Galandiuk, as she was highly recommended. The first appointment was towards the end of April. When my appointment time finally got here, I was both anxious and nervous especially with the thought of a possible major surgery looming in my future. We talked about the surgery, the process, the possible complications, and she answered any questions I had. When I asked her if surgery would benefit me, she said yes I decided to go ahead and schedule it. My surgery was scheduled for June 7th, 2010, which fell two days after the first Take Steps walk in Louisville. It was either irony or fate that my surgery was scheduled for that date.
The day of my surgery quickly snuck up on me. Surgery was done with no major complications. Dr. Galandiuk removed 9 and a half inches of my small intestine out (and re-sectioned) along with removing what she said was “the biggest fistula” she had ever seen. I spent a week in the hospital and then I was finally able to go home and finish my recovery. It was an additional 3 weeks before I allowed back at work.
Since then I have become very involved with volunteering for the Kentucky Chapter for CCFA. Most recently I’ve been helping Jenny Silberisen with getting the word out about CCFA and IBDs by assisting in getting blog postings up and doing Facebook updates as needed. I have also assisted at the educational programs that were put on in 2010 in both Louisville and Lexington along with the Love Your Guts fundraiser. Anything that Jenny needs and I can do, all she has to do is ask (or me offer)! It’s like I became one of Jenny’s right hand man (or in my case woman), and volunteering has made me feel like I’m needed and gives me a purpose. It’s very important to get the word out about IBDs, and volunteering allows me to do that and so much more.
Because of volunteering and fundraising, I have had the chance to meet people I would have not normally would have met. After posting on an unofficial bulletin board at work, I met a gentleman that works in the same building as I do whose young son was diagnosed with Crohn’s Disease. I told him about CCFA and how they were trying to get a Kentucky chapter started and how volunteering would be a beneficial thing for the both of them to do. Just a few weeks ago, I posted again on the unofficial bulletin board trying to fundraise for this year’s Take Steps walk. I received an email from a lady who worked in the building next to mine who was recently diagnosed with Crohn’s Disease and she had so many questions about it and my experience. I told her my story and made sure she knew that I was there for her if she needed someone to talk to. Without my volunteering opportunities and fundraising efforts, I would not have met these people who are dealing with Crohn’s disease and give them some kind of support they may not have had otherwise.
So that is my story. I hope you will share it with others who may be dealing with issues related to IBDs.
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