This is my story…

Hi – just joined so thought I would share a semi brief of my life with Crohn’s. Diagnosed 13 years ago after about 18mths – 2 yrs of symptoms. Too scared to say anything to anyone with the amount of blood coming out in the toilet. Then dealing with a anal fissure seeing different Drs, a surgeon to fix fissure who then sent me to a GI for tests & diagnosis. Reached remission with meds. Had a baby with just monitoring and no issues. Came off all meds & symptom free…pregnant 3 years later & flared REALLY badly. Had bub emergency caesarean with burst abscesses everywhere. On meds again, which didn’t work, then started infliximab infusions. 13months later ended with a perforated bowel, emergency surgery and an illeostomy bag. Reversed 9 mths later. No active disease but many many hospital admissions with obstructions. 18mths later had gall bladder removed with adhesiolysis due to dense adhesions. 3 dilatations done to stretch stricture. Another open resection 4 months ago to cut through adhesions top to bottom and another right hemi-colectomy to remove stricture. Just had scope yesterday which still says no signs of any Crohn’s and everything looks perfectly normal with no strictures!! Yay, right???? So why don’t I feel as good as my colon says I should?? Joint pain has increased & woke up on my 40th bday unable to straighten my elbow. Pain some days then fine the next. Seeing Rheumatologist in a couple of weeks for the first time. Thanks for reading my novel 📚

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Comments

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  • Julie Marie Palumbo moderator
    4 months ago

    Thank you for sharing your story with Crohn’s, JulesB!

    I have heard that pregnancy can cause IBD symptoms to go into remission, and I am glad you had 2 successful pregnancies, albeit an emergency c-section. How are your children?

    Your rollercoaster ride with Crohn’s is quite full of ups and downs, but I am glad to hear you are currently symptom free (GI-wise) and hope you find relief soon with your joint pain.

    This article may shed some light on joint pain with IBD, as you are definitely not alone!

    https://inflammatoryboweldisease.net/symptoms/inflammation-of-the-joints-skin-and-eyes/

    Thanks for being here!

    Best,
    Julie (InflammatoryBowelDisease.net Team Member)

  • thedancingcrohnie moderator
    5 months ago

    Hi @julesb,

    Thank you for taking the time to share your story, you have definitely been through so much. You are such a warrior for powering through it all. I know how confusing it may feel to be told you you are “perfectly normal” yet still feel crappy. Maybe this article may help?

    https://inflammatoryboweldisease.net/living/remission-mean-symptom-free/

    I hope you continue to heal, you have come such a long way and I know many who read your story will be inspired!

    Wishing you the best in health.

    Always dancing,
    Elizabeth (team member)

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