Marathon #66 – 26.2 for Sue


Sue’s Story:

I was honored that Coach Marc felt my story should be shared. Even though many years have passed since my diagnosis. I still don’t like talking about my past or present struggles with Crohn’s Disease. However, how could I refuse the request by Coach Marc given his strong advocacy and devotion to our Team Challenge family.

My Crohn’s diagnosis (aka My Alien) was not rendered until I was 32 years old, but I’ve had issues for as long as I can remember. High school is when my symptoms became more frequent, enough so, that I went to a doctor for answers only to be told it’s probably just teenage nerves or a bout of Colitis.

Thankfully I was mostly healthy in my 20’s, and needed to be, as I became a mom at 21. Most days were still spent running to the bathroom, cramps, and more and I just thought that this is how I digest things. Many days plans were cancelled last minute, many times I wouldn’t commit to plans having the fear of not knowing where or when a bathroom would be available. I’d make any possible excuse as to why I had to cancel, instead of just telling others the reason why. 

Fast forward to the late 90’s and heading into the year 2000 my health started to decline rapidly. I was referred to a Gastroenterologist as my primary doctor couldn’t figure out what was going on. This is when the fun began, so many tests, some common, some odd, some embarrassing, but all finally lead to my diagnosis of Crohn’s Disease.

I really didn’t think too much into this disease, after all so much of my life up to this point was ok. I figured the doctor would put me on some medicine and all would be good. That was not the case. Initial treatment included high doses of steroids and many other numerous pills a day. At one point I was taking 24-28 pills a day and it seemed to help and finally provide some relief. I remained somewhat healthy for a couple of years until the year of 2003, I was 35 years old, single parenting, working 2 jobs and my health declined to a very dangerous level, gravely ill are the words I recall seeing in my doctor’s notes.

I encountered so many new symptoms including massive weight loss, cramping, mouth sores just to name a few. Most nights I would be sick or needing some type of care that would require me to wake up my son who was 13 at the time. This is something no child should have to do or experience but I am so thankful he was there to be my rock and reason to keep on going.

I had frequent weigh-ins at my Gastro’s office due to the weight loss, I often hid rolls of quarters in my pockets, wore heavy shoes and clothing all to try to show a weight gain only to continuously lose weight. I was well under 100 pounds, more like under 90, I stopped looking at the scale. My Gastro was running out of options, he was treating me without insurance as my condition pre-existed my insurance coverage. Typical treatments were not working and surgery leading to a permanent bag seemed to be the only option. Thankfully my Gastro and his team continued to look for other options and we went with a newer treatment, a biologic drug called Remicade.   

I started my Remicade treatment during the northeast black out and was thankful the hospital was still able to do my infusion. Remicade worked for a while until arthritis symptoms became unbearable. New treatment plan was Humira. I celebrated my 40th birthday learning how to self-inject my new medication and thankfully it has kept me pretty healthy for 14 years.

I have been involved with the Crohn’s and Colitis Foundation from the beginning, I participated in the very first Michigan walk and walked almost every year since along with volunteering with the local Michigan Crohn’s and Colitis chapter.

For years I wanted to join Team Challenge and run for my cause of Crohn’s Disease and I am so thankful that I finally got the courage to do so. I became a Team Challenge Half Marathon participant at the Oregon event, 2022 and loved it, so much so I am participating in my 2nd in Nashville, TN in October. I may not be the fastest runner, more like a turtle pace walk/runner but the Team Challenge family, kept my spirits high, pushed and encouraged me through times I didn’t think I could do it.

So, to end my story, a huge thank you to my family for always being there for me, supporting me and helping me when needed. I also need to shout out a thank you to so many others, friends, the local Michigan chapter and Team Challenge for their continued support. One last person, name to remain anonymous. I experienced one of my most embarrassing moments of my Crohn’s life in high school, and to this day, very few know the story and it will remain that way for now, so THANK YOU for not telling the story while in school, you will never know how much I appreciated that and still do.

Let’s do this – LET’S FIND A CURE!

Marathon #66 – Recap

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