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50 Years of Crohn’s

When I was first diagnosed, it was called ileitis. I was 17 years old and had no clue how serious this was. There were two treatments, Prednisone and surgery.

No one understood my Crohn’s

No one really knew about my disease. Even my parents never understood. I spent over 30 years on and off steroids, had three resections, obstructions, fistulas, hernias. In total I have had about 10 surgeries.

The toll of living with Crohn’s disease

All of this has taken a tremendous toll on my body. I have osteoporosis, connective tissue disease, adhesions, short bowel syndrome. As I get older, I am unable to tolerate more foods that I can eat. Eating has become something I dread. Always scared of what will happen.

I have to plan out everything I do around food. I will not eat unless I am home or very close to it.

Most people, despite my trying to explain my situation, never get it. I am so tired of being on the outside of conversations, plans, etc.

Support from family makes all the difference

Thank god for my wonderful husband of 46 years. I don’t know how he has put up with all of this, but I am so grateful.

What I am trying to say is that despite all of my anger, I am blessed with four wonderful grandchildren who at the age of 8, 5, 4 and 2 understand what I can and cannot eat better than my so-called friends.

There are so many more treatment options these days

To those of you newly diagnosed, you are very lucky. Not because you have Crohn’s, but because there are so many more options available for your treatment.

Thanks for listening.
Carol G

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The InflammatoryBowelDisease.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • dodo
    4 months ago

    Hey-good to hear from another long-term survivor.I was dagnosed 45 years ago this month-not an anniversary to celebrate,tho!Hope you can continue to thrive as best you can.

  • thedancingcrohnie moderator
    9 months ago

    Carol,

    Thank you for sharing your story with us. Goodness, 50 years with Crohn’s is a long time, and I can only imagine the fight you have had to endure.

    It’s funny how children can be way more understanding than adults. It makes me happy that your grandchildren are thoughtful and can offer you comfort when it comes to your food restrictions. And it also makes me happy that your husband has offered you the much needed support. Where would we be with out our caregivers?

    I hope you are doing well these days. Thank you for being a part of our community and sharing. It is so nice to hear from you and remember, you always have a community here to lean on.

    Always dancing,
    Elizabeth (team member)

  • author
    7 months ago

    Thank you for your kind words. I seem to have some difficulty finding comments I have made on other people’s posts. I put up a post about feeling left out in response to the story about feeling isolated, but I cannot find it.

    Is there a direct link to see these comments?

    I am feeling very isolated now. Never included in things. I guess people feel because I cannot enjoy Therien
    “Wonderful lunches and dinners”, why bother to ask.

    I am a 67 year old woman and am too old to play these silly games; people whispering about things in my presence etc. it’s very hard no matter how old you are!

    Crohns sucks!

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