Sunday, April 10, 2016

Running for Life: Diagnosed with Crohn's Disease

One of the big driving reasons in my life that I choose to run is because of Crohn's.  At times, Crohn's can deplete me mentally and physically - but when I run, all that fades away.  My body feels strong and healthy, and I know I can overcome any obstacle life puts in my way.  Having Crohn's, that feeling is something I no longer take for granted.

I was diagnosed with Crohn's disease shortly after moving to Massachusetts after college.  I had just started a new "big girl" job in healthcare management, moved far away from my friends and family, and moved into an apartment on my own.  Looking back now, I had been experiencing symptoms for quite some time before that, but then the disease became undeniable.  I lost weight rapidly - down almost 15 pounds in a few weeks - and experienced excruciating abdominal pain.  The more I tried to ignore it, the worse it came back with a vengeance.  Finally I found myself admitted to the hospital with a nasogastric tube and preparing for a colonoscopy - and in the next few days, was officially diagnosed with Crohn's disease. 

Shortly after moving to MA at less than 100 pounds
  The news was devastating.  At the time, I knew nothing about Crohn's, so I did as much research as I could.  I learned that there was no cure for this chronic condition, and that physicians weren't even sure what caused it.  I learned that in addition to abdominal pain and other unpleasant GI symptoms, it could cause fatigue, weight loss, joint pain, mouth ulcers and more.  It explained so much of how I had been feeling.  

As the next few months passed by, I learned that I could help to control these symptoms.  My gastroenterologist tried a number of medications before we found one that worked - an oral medication called azathioprine, which works by suppressing the immune system (and putting patients at higher risk for other diseases, since white blood cell production is suppressed).  I also learned that diet played a huge role in the inflammation and pain I was experiencing.  The foods we traditionally think of as healthy - like whole grains, vegetables, fruit and dairy - wreaked havoc with my GI system.  Over the years, I have learned through trial and error which foods work for me, and which I can tolerate when my disease is flaring versus when my symptoms are in remission.  

Yikes, check out that prednisone puffiness!
 I also found that exercise was critical to help relieve symptoms (as well as, for me, to reduce stress levels - is commonly thought to be a trigger for Crohn's flares).  So although running could not have been harder at the time, as I found myself sometimes doubled over in pain or experiencing crippling joint pain, it felt like one of the very few things I had control over during a very uncertain and scary time.  

When I completed my first marathon after being diagnosed with Crohn's, I knew I had fallen in love with this sport all over again - and felt like nothing could stand in my way.  Running with Crohn's has proven to me that despite the physical and mental challenges of this chronic disease, I am stronger and braver than I sometimes feel.  Crohn's has taught me patience - knowing that there will be days where just getting out of bed is a struggle, and I need to work with what my body gives me on a day-to-day, and even moment-to-moment basis.  And Crohn's has made me grateful for the days that I do have - those incredible runner's high moments where it feels like I could go forever.  I know with this disease that life has no guarantees - but living with Crohn's gives me a reason to push past all that, and to experience every moment of the run. 
 
First marathon post-diagnosis - victory!

 Why am I writing about this now?  Well this week, I received some not-so-great news.  It appears that my miracle drug that has kept my Crohn's in remission for the past five years or so is no longer working for me.  That's not altogether unusual, as the body adapts to a certain class of drugs and requires a more aggressive form of treatment.  However, I was hoping to have at least a few more years on this one.  Now all I can do is wait for more testing to figure out what my body up to now... including my fifth colonoscopy in as many years.  

As unsettling as all the uncertainty is right now, I am doing my best to take each challenge as it comes.  I am focusing on being grateful for how strong my body has become over the years, both as a result of this incredible sport of running and of fighting this disease.  Crohn's has put many obstacles in my path, but for now, I appreciate every moment I have to keep running on.




22 comments:

  1. So sorry to hear that your medication has stopped working. Hopefully one of the other agents will be the one.

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  2. You are truly inspirational! My sister in law has Crohn's, over 16 years. She currently takes an intravenous drug that is administered at a cancer treatment center. Anytime running is mentioned in conversation, she insists she "can't". But here you are -- another beautiful example that you can do whatever you set your mind to, despite the obstacles. I'd rather her just say she doesn't "want" to run. I'm sure you will find a drug that will allow you to keep reaching for your dreams. Thanks for linking with us Michelle.

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    1. Thanks so much for the words of encouragement :-) There are definitely days where I "can't" run too... the challenge is learning to listen to your body, and to take what the body is able to give on a day-to-day basis. That may be different for each of us, and we learn that over time.

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    2. I've been diagnosed with Crohn's disease 2 years ago. i Tried every treatment traditional could give me: Immunosuppressive drug, anti-tnf, cortisone etc. Nothing worked. Medical Marijuana is my last hope. Unfortunately I live in France. a friend introduce me to this great man called dr jatto i told him my problem and he give me some tips about his herbal medicine and send it to me in , i took it and i saw changes on me thanks to dr jatto you are the best.👍👍👍
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  3. Are you on Twitter? Want to share and tag you

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  4. What a bummer! But, your attitude is top-notch. None of us know how long we'll be able to run, so we all should appreciate each and every moment we're able to do it. Thanks for the reminder!!

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    1. Thanks so much - you are so right! I keep thinking I "get" to run... not I "have" to run :-)

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  5. I'm sorry about the drug. You WILL find a different one. Keep your head up and keep those feet swift. :)

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    1. Thanks so much for the words of encouragement!

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  6. You have quite the inspiration story Michelle, I do not really know what you go through with having Crohn's, but you are not alone and it sounds like you have such an appreciation for the times when it does not bother you. You've done a lot of research and your story could help many others. I'm so very glad you shared this with us! No matter what you are faced with, with your attitude you can over come anything!

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    1. Thanks so much for your words of encouragement :-) I know how much it has helped me to hear from others going through similar situations... I only hope I can do the same!

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  7. Sorry to hear your medication isn't continuing to work for you. Great pic of your first marathon. What a great accomplishment! The Disney one in 2013 was my first one too. Wasn't that a great medal?-L

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    1. Thanks so much! I absolutely love the Disney marathons - the best memories come from those races!

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  8. You are a warrior and very inspirational. I'm a dietitian and I've worked with some clients who suffer from Chron's or UC. You have such a great outlook and I'm glad you have found running as your passion - I hope they figure out a new med!

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    1. Thank you, I really appreciate the encouragement - keep up your great work, it is SO needed!

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  9. You are a tough fighter! I'm sorry to hear your medication doesn't work anymore, I hope you find something that will help again! You are strong, keep on running!

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  10. I am so sorry to hear that your meds aren't working. I hope that you are able to find something that will just as effective. Your story is so inspiring and this is just a small setback in the grand scheme of things. Good luck!

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  11. Sorry to hear your meds quit working for you, Crohn's is a tough one. I hope you find your next something that will help soon

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  12. I'm so sorry your meds aren't working. All three of my sisters have Crohns. I've seen it first hand, and I know how hard it is to stay physically active when you have such a draining illness. I think about them when I run, because none of them are well enough consistently to be able to engage in an activity like long distance running. I hope you find a better medication, and all the best in your running endeavours! Staying active is so helpful in the long run, even though I'm sure it's very hard!

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