Mark

In 2007, I was a healthy 45-year-old, running 5K races and biking many miles around Boston and the Charles River. At some point I did not feel well and started to see blood when going to the bathroom, never a good sign. After undergoing a colonoscopy, I was diagnosed with proctitis. I did not think much of it at the time figuring I’d just take a few pills and I’d be alright. Fortunately, I was able to manage the disease for quite a few years, but over time it just kept getting worse and worse. Looking back, I probably had close to 10 colonoscopies in 7 years. Unfortunately, in April of 2016 I went into a major flare after running a 5K race and after having just started a new job. 

I was given every pill the GI doctors could find without any success. Finally in November of 2016, the doctor suggested I try Humira. Initially, I hesitated as I did not know anything about Biologics, honestly, they scared me, but by this time my Ulcerative Colitis had extended all the way up my Colon and was not slowing down. I finally agreed to try Humira in May of 2017. I had been in a flare for 14 months, I had lost 35- 40 pounds, I looked and felt sick! Because of Fail First insurance rules I had no other option but to try Humira before any other Biologics even though my doctor wanted me to try Remicade. 

I did my first loading dose of Humira and then a 2nd self-injection in May of 2017. It didn’t work and on June 5 that year, I called my doctor and asked for help. I knew I was sick, really sick, and this just wasn’t going to work. We scheduled a colonoscopy for June 12 and when my wife drove me to the local hospital, I was incoherent, severely dehydrated and in serious trouble. The doctor decided I was in condition to have a colonoscopy so I was admitted to the hospital right away. I needed help because my body was shutting down. 

After spending 10 days in the hospital, it was decided I needed surgery and I needed it soon. I was transferred to Beth Israel in Boston and has yet another colonoscopy and the resulted in the decision that I needed surgery immediately!

I was devastated! I had no idea what it meant to have a surgery where they would remove my colon, and maybe my rectum. What if I had to have a colostomy bag for the rest of my life? This was a lot to think about and process. So, I asked what my choices where for surgery and was only given two.

Option 1 – Have surgery the very next day. I could not do that.

Option 2 – I could live on 100mg of Prednisone for 2 – 3 weeks.

In order to get my head around what was going on, and potential avoid surgery, I asked if I could try the Remicade option, but the surgeon told me I would not make it back to the hospital in time for that because the results would take too long.

After 15 days in two Boston hospitals, I was able to go home for 3 weeks, before heading back to Beth Israel for surgery on July 19^th. I was given no promises on whether I would have a bag for the rest of my life, or not. I was very nervous about surgery but little did I know this surgeon had done hundreds of these surgeries and I was really in good hands. The doctors at Beth Israel saved my life! 

The step 1 surgery lasted almost 5 hours, but it went well and to my delight I survived. I came out of this surgery with a temporary ileostomy bag. I stayed in the hospital for another four days before being able to go home. As soon as I got home, it was clear my stoma was not cooperating. My stoma caused me nothing but grief. It was severely retracted and my skin was burning off some each day. I sat in my office at my new job and cried every single day. Despite this I powered through it and was able to still do my job. 

I was given two options to fix the stoma:

Option 1 – Have another surgery to relocate it.

Option 2 – Just deal with it and the surgeon would expedite my takedown surgery.

I decided to go with the second option and my takedown surgery ended up being only 6½ weeks after my step 1 surgery. I can tell you this, the body is not prepared to handle two surgeries like this a mere 6 weeks apart. 

Finally, after two pouchoscopies that were to verify that there were no leaks, my takedown was set for September 5^th. This second surgery went well and I was able to go home four days after it was done. At this point I was now living with a J Pouch and my immediate thought was…what is this going to be like???

2017 was a heck of a year as I spent Father’s Day, the days leading up to my birthday and my actual anniversary in the hospital. This all happened in the span of 4 months, it was not a fun summer that year. I was told it would take me almost two years to feel “normal” again and that seemed to be true. I did have nighttime incontinence for 3+ years and still do today, but to a much lesser degree.

I am a very lucky person as I am a success story, although at times it does not feel like it. 

Now at 61 years of age, I am biking, walking and I even ran a 5K again, with Team Challenge.

Over the years, I have committed myself to support the Crohn’s and Colitis foundation in any way I can. I am involved in the Greater Boston Take Steps program as a participant and planning committee member. I advocate at the Federal and State of MA level and helped get the Safe Step Therapy bill signed into Law in Massachusetts. I am a peer mentor to those facing the same surgery I had and I just finished my first Team Challenge event early this year, a 5K in Clearwater, FL with the Team Challenge program! 

Is everyday easy? No, not at all, but I am alive and thriving as best I can and at my age now, I take nothing for granted!

I have talked about my story before to many people, but this is the first time I have written this much of my story in this much detail. It is a little overwhelming to think of where I was, on my deathbed, to where I am today, living life one day at a time and trying to enjoy every minute of it.

In May of this year, I recently had to have hernia surgery which was related to my 2017 lifesaving surgeries. Very shortly after I was home, I ended up going back to the ER due to complications and was admitted for another 4½ days. I had an intestinal blockage, which was one of the most painful and scariest things I’ve ever gone through. But here I am, once again, fighting through it, still going and intending on living life to the fullest.

Marathon #68 – Recap