Every Medication Failed so far

rubin16
rubin16 Scope Member Posts: 972 Championing

I think my crohns is starting to flare again, as been in quite some discomfort and pain the past week. But I'm without medication as everything has failed so far to work. Over the years I have tried various medications such as Pentasa (didn't work), azathioprine (which damaged my liver), adalimumab (which worked briefly but I built up antibodies to), Infliximab (which I had a severe allergic reaction to) and then recently tried ustekinumab which again badly starting damaging my liver so had to stop.

Since being diagnosed with crohns over 12 years ago when I was 18 I have had 8 Surgeries for it, have had 2 stomas (Had it reversed and had to have it again after falling ill again), had multiple fistulas which were so painful and I couldn't walk for like 2 years becuase it was touching a nerve that went down my leg.

I'm just scared theres no end. I have been battling this horrible disease my whole life and roughly have a flare up every 8 months upto date which mostly ends up in a hospital visit and a high dose course of steroids to settle it. I am now worried that I have exhausted most options when it comes to medication as the most recent medication I tried was brand new and only just got funding for it.

Comments

  • rubin16
    rubin16 Scope Member Posts: 972 Championing

    Feeling so ill and depressed today. I'm just so sick and tired of this endless battle. I can't do anything with this constant ache and sickness feeling. Everytime I try eat something the ache gets worst.

    Everytime I think I am improving or getting better I fall ill again, its always like 2 steps forward, 5 back again. At what point does a person just stop wanting to fight and just give up. I'm just tired of fighting.

  • Bluebell21
    Bluebell21 Online Community Member, Scope Member Posts: 14,326 Championing

    Hi @rubin16 I am so sorry you are having such a challenging time. If none of you medication is working what is your Consultant going to do for you? Do you have an appointment soon?

    Not being able to eat what you would like is a nightmare for you. I have to be careful with food as I have Ulcerative Colitis.

    Do you have any help with how this affects your mental health?

    Please take care of yourself.

  • Community_Scope
    Community_Scope Posts: 1,972 Scope Online Community Coordinator

    Sorry to hear you're going through this @rubin16. It sounds like you have been through an awful lot and are it's still continuing so its understandable why you're feeling like this.

    A member of the team is going to pop you over an email soon so please keep an eye out for it.