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My son’s story

Hello everyone, my son was diagnosed at age 15 with indeterminate UC. It was very severe and no medication or treatment worked to try and get him into remission. A year later he was having j-pouch surgery. Fast forward, he is now 23 and had his pouched scoped and told he was misdiagnosed and now he has crohn’s. He is very disappointed. It feels like such a setback. As a mom, I worry. My understanding is that crohn’s can be progressive if not gone into remission.

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Comments

  • 2 years ago

    Hi dmstern, as a mom myself, I understand the worry for your son. I think it’s great you’re hooked into this site. I’ve found enormous reassurance and validation by the posts. I’ve had Crohn’s since 2000, I’m 52 yrs. old, I’ve tried almost every drug/treatment approved, currently in my 4th month of a new biologic drug. I don’t think I’ve ever been in “remission” but there are times I feel better/healthier than others. Every person’s disease course is different, that is a fact. What works for one, may not for another. Adjusting my lifestyle has made the biggest difference. I eat mostly organic, manage stress, listen to my body, rest when I need to, and I am regularly researching the options I have as well as the advancements that are coming down the road. We can’t “get rid” of this disease…..yet, but we can learn how to manage it. I will keep you and your son in my prayers:) Best of luck in your son’s health journey. Way to go for reaching out!!!

  • Meagan Heidelberg moderator
    2 years ago

    Hi dmstern-
    Thank you for showing such awesome support for your son. We are so sorry to hear of his misdiagnosis of UC. The good news is now that the doctors know what is going on, a better treatment plan can be determined and implemented! We understand the disappointment, and please know that you guys are not alone. Here is some information on the various treatment of Crohn’s Disease that you may find helpful; https://inflammatoryboweldisease.net/treatment/.
    Please feel free to keep us updated!!
    Best – Meagan, InflammatoryBowelDisease.net Team Member

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