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  • adr810
    Hello! I’ve had Crohn’s disease for 14 years and I have been on immunosuppressant drugs for the last 5 years. In winter 2016 I started having numbness from my waist down. In summer 2017 I had a second flare that was much worse. An MRI showed lesions on spine and I was diagnosed with Transverse Myelitis. My MRIs were clear until this summer. I had another flare a new lesion on my spine so my diagnosis was changed to MS.

    My doctor really wanted to put me Tysbri because it treats both MS and Crohn’s. I asked to wait on this drug because I’ve been given the opportunity to travel the country for at least a year and didn’t want to have to come back home for infusions every 4 weeks. So, I will be starting copaxone next week for the MS and continuing with Entyvio for the Crohn’s disease. 

    Anyway, just curious if anyone else here has Crohn’s disease and how you manage both diseases? I know my treatment options are a bit limited because I also have to treat the Crohn’s disease. 

     
  • maria1
    adr, I celebrate your stubborness and I celebrate your courage. That you have opted to travel the country first is remarkable. It is wise, in my opinion, that you are filling your life with the memories you want, when you are older you will appreciate all you have done, and that is very important to have when getting to a seat is a challenge. Even though I do not have Crohn's I have had other issues that have given me difficulties and have see regret as the most important burden to avoid especially when I could not turn the clock back. May you see the beauty in all the states and may they greet you with a smile. Have a grand journey that will hug you the rest of your life. maria
  • heymanhowsitgoing
    I don't have Crohn's, but I do have some understanding of IBD in general.

    1) There is a treatment called RHB-104 that's being explored for both Crohns and MS: https://multiplesclerosisnewstoday.com/rhb-104/

    2) Have you tried changing up your diet? Avoiding FODMAPs? Giving up gluten? Have you tried starting a food log to try to identify any food triggers?

    3) Which immunosuppressant were/are you on?