Marathon #19 – 26.2 for Heather


Heather’s story:

When Marc first asked me to me one of his honored hero’s for the 26 marathons that he was running, I thought to myself, why would he chose me?  I was always quiet about my disease.  I didn’t share much with anyone, most people didn’t even know, for the longest time, that I suffered from Crohn’s Disease.  I always felt like my story was too simple.  It isn’t one with hospital stays and surgeries, in fact, I feel like I am one of the “lucky” ones, for my diagnosis came within three weeks of first being seen by a doctor.  It was the spring of 2008, I had begun running on the treadmill to try and lose some of the baby weight from my second child, Sarah, who would be turning one in June.  I was starting to feel great, losing weight and getting stronger and faster.

Then at the beginning of June, just before Sarah’s first birthday things started to get “weird.”  I couldn’t go more than two minutes on the treadmill without having to rush to the bathroom.  It got to the point where, when I would go, I was only seeing blood and mucous in the toilet.  Then it got to the point where I would rush to the bathroom between 10 and 15 times a day, hoping each time that I would make it.  I ended up losing over 25 pounds, but I thought the weight loss was because of the exercise and the stomach issues were because it was a very stressful time of the year in my job.   It finally got to the point, after about three or four weeks that my husband said to me, “what is happening to you is not normal.  You need to see a doctor.”  So I made an urgent care appointment with my doctor’s office and was able to get in that day with an on-call doctor.   After I went through my symptoms and he took a swab he immediately told me that I needed to be seen by a specialist as there was blood.  So they made an appointment for me for the next week.

So, next week I went in to see this doctor, who specialized in Crohn’s, and he said to me, well, I highly doubt that you have Crohn’s as it is more prevalent in Jews.  You see, he just looked at my name, which is Italian, so assumed I wasn’t Jewish.  When I said to him, well, I am actually Jewish and I have many family members that suffer from both Crohn’s and Ulcerative Colitis.  He then said to me, well, that makes a lot of sense.  He wanted to have me get a colonoscopy and some blood work in order to confirm the diagnosis.  The only problem was, the first open time wasn’t for another three months.  Lucky for me this was a teaching hospital, so the doctor asked me if I would be willing to enter into a trial, and if so I could have a colonoscopy the next week.  Hello?!?! Of course I would!  So a week later, I had my colonoscopy and the results came back that the Crohn’s was affecting my entire GI tract.  I was immediately put on an immunosuppressant and prednisone to try and get the inflammation under control, and it did just that, for a short period of time.  Since July of 2008 I have been on three different medications, increasing dosages with each, most working for a short period of time, but nothing more than a year.  I finally got to the point of starting Remicade this past December, and so far it has been working.  I can’t say the “r” word yet, but I’m hoping for that that will be sooner rather than later!

But honestly, this is only the beginning of my story.  In February of 2017 my world came crashing down.  The words that a person who suffers from any chronic illness never wants to hear were said to me.  My daughter, Sarah, was also diagnosed with Crohn’s disease.  I went from not only a patient, but to a caregiver as well.  I felt guilty that I could not protect her from the pain of this disease.  And right then and there I knew that I could never be quiet about this disease again.  I knew, at that moment, that I needed to help find a cure, for you can mess with me all you want, but never, ever mess with my kid!

I signed up to run the Saratoga Springs Half Marathon in July of 2017 with TCNE and this is where I found my TC Family.  People who I can lean on, I can talk to and who understand what we are going through!  My story isn’t over, each and every time one of my other two girls complains about a stomach ache I cringe.  I pray every day that they won’t have to go through what both Sarah and I are going through with treatments and medications.  My story will never be over until both Sarah and I are in full remission and a cure is found!  Thank you Marc, thank you for all that you are doing to help us find that cure, so that both my baby girl and I will one day be pain free!

Running 26.2 for Heather!

Marathon 19 – Recap

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