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Crohn's .... Newly diagnosed

Thank you for adding me.
In the last 4 years I have had numerous hospital stays and 3 colonoscopy procedures and countless scans and xrays. My markers are high for faecal calprotectin. My consultant has discussed treatment and has given me a couple of weeks to decide which way I want to go. On offer is biologics or surgery.
I have no idea about biologics except for what I have managed to find on-line.
Can anyone give me insight and advice please, also surgery Vs biologics. Many thanks in advance Sam

  1. Throughout my journey with Crohn's I have been suggested surgery a number of times while on biologics. For me personally, I just never felt I had to go so extreme, although some people have no choice in the matter as it is life or death.

    Of course, if God forbid it was between life and death, surgery all the way. But in my personal journey, I am glad I said no to surgery as I have finally found a medication that has proven to work for me and I am able to function. Don't get me wrong, I have yet to hit remission but I feel better than I have ever felt while taking a drug.

    The current medication I am on is called Xeljanz. It actually isn't a biologic, it is a JAK inhibitor, so it works differently than biologics. Here is more info on the different types of medication available for Crohn's that you might find interesting: https://inflammatoryboweldisease.net/treatment/medications

    My journey has been hard, as for me to get to this point I went through practically all of the biologics. First with Remicade, Entyvio, Humira, then Stelara. I was on these drugs for about a year and half but they didn't work for me. I kept getting severe flares and kept ending up in the hospital. However, I always said no to surgery which is what let my medical team to trying Xeljanz and so far so good.

    This decision is super personal. You have to do what will fit best for you and how you want your life to be. I also know many who have had surgery and say they wish they would have done it sooner, as their quality of life is practically back to where it used to be pre-diagnosis.

    I hope this helps some. Reach out whenever.

    Hugs, Elizabeth (team member)

    1. Thank you so much for your reply. I will check out the link.
      Sam

      1. Not a problem. Good luck. -Elizabeth (team member)


    2. Welcome to the community! I can't really advise, as we are all very different. None of my surgeries have really been optional - it's been a case of you have this surgery or die so you know, you just stay alive lol.
      I have had my fair share of treatments, but you do normally hear of consultants trying treatment after treatment to prevent surgery, but you are obviously at a point where they feel like that might need to be soon anyway.
      The thing with Crohn's is that it can always come back somewhere else, so you may have surgery and then end up on biologics a few months down the line anyway...
      It's definitely a big decision, and it's impossible to predict what would happen after surgery, because there's always the possibility that you have surgery and not flare again - ever, or for a long time! But, the same could be said for the biologics. You could start them and end up in remission, and stay there for a long time!
      Best of luck with your decision making!
      ~ Sahara (team member)


      1. Thank you for your reply, much appreciated. Sam

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