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Wanting a new medication

  • By Crohns1998

    I have had CD for about 20 years, a mild to moderate case that is allegedly in clinical remission but still having symptoms daily and have for years and years. I finally tracked my symptoms after almost being allowed into a clinical trial but screened out for symptoms that were not severe enough for the study. I have been on mesalamine nearly the whole time but feel like it does little for my symptoms. I even became non-compliant with my regimen for a while and felt no big difference in symptoms. I fall into a strange category of being ill enough to worry about cancer risk, had minor surgery (fissure repair and sphincterotomy ten years ago) but not severe enough for biologics or prednisone. I guess I am glad about that but at times I am worn out by the symptoms and fatigue that I do have. It seems like I have not met many mild to moderately affected people and wish that I knew more.

  • By SusanHU

    Thank you for sharing your story Crohns1998 – we appreciate the insight. I wanted to follow up to see if you’ve discussed this balance with your doctor and talked to them about what your goals might be? Regardless of severity, it can be helpful to connect with your healthcare team about what you’re looking for from your treatments.

    We’d love to hear how that conversation would go!

    – Susan ( Team Member)

  • By Kelly C (#purpleproject) Moderator

    I realize it has been some time since you posted – but have you found remission since you last wrote?

    Looking back on what you posted, how many different meds have you been on since then & were they biologics? Hope you got the care you needed.

    Kelly, Team Member