running out of options....

Posted , 6 users are following.

I was diagnosed in April with UC, they've tried all sorts of medications, mesalazine, mercaptopurine, Azathioprine, multiple rounds of steroids, IV hydrocaustizone, mesalazine enemas, and NOTHING is working!!! the mercaptopurine was working really well for me but started to give me intense migraines pretty much keeping me in bed all day everyday! saw my doc yesterday and hes put me on the azathioprine, but its making me feel faint, im being sick, i have the runs!! he said that this is pretty much my last option and then he isnt sure what else to suggest, this could mean surgery but that terrifies me! i am also severely aneamic which isnt helping me stay normal and go to school every day! has anyone got any tips or advice on what to suggest now? i'm only 17 and feel like this is ruining the best years of my life! 

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6 Replies

  • Posted

    Infliximab can work when nothing else has
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  • Posted

    I'm getting to that stage too, I'm on tacrolimus at the moment. I was told my last one would be velodizumab, but it's only just been approved and risks are high and maybe consultants are willing to try different things. You are only young and the longer you are on these immune suppressants the higher the risks. I have read the supplement Boswelia helps but do your research first, I wouldn't want to recommend anything, I'm not medically qualified. But don't give up hope I was at my worst about your age too, make sure you are having the correct diet for your condition and request to see a dietician if you haven't already. It's been 25 years for me suffering but hasn't stopped me living normally.
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  • Posted

    You poor thing,

    You are not alone,  I'm quite a bit older( 37) but in a similar situation....

    Doctors won't tell you, but change your diet,  try FODMAP... remember be patient with food though it really takes months...

    Also ask your doctor about a drug that begins with a V? It's fairly new but is used because it only targets someone's stomach, without side affects for the rest of your body...however no doubt it can have other side effects as usual with all drugs .... 

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  • Posted

    my friends daughter who is around your age has been having infliximab and its been helping her. Good luck
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  • Posted

    I'm so sorry to hear of our problems.  I was diagnosed with UC and hospitlazied for a couple of weeks when I was around 25, more than forty years ago.  I was put on prednisone, I believe.  I read at the time that UC is stress related so I looked into the subject and started relaxation exercises.  Now I don't know if that had anything to do with it, but for the next thirty years only had some minor episodes of diarrhea but lived a normal life.

    I did have to have a liver transplant fifteen years ago because of PSC, another automimmune disease, and ended up having to take tacrolimus since.  That can have negative side effects in the long run, but it's probably better than surgery if it works.  Even so I went back to teaching for the next twelve years.  So a normal life is quite possible.  Don't lose hope.

    My suggestion?  Try to reduce stress in your life, have faith that things will work out and read as much as you can on the subject so you can make the best decisions.  If you're not able to communmicate with your specialist, find another one.

    Good luck!

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  • Posted

    Sorry to hear you're so poorly, I was diagnosed with UC last summer, mesalazine didn't do much for me, steroids worked but I still ended up in hospital for christmas then several courses of steroids back to back they put me on azathioprine, but that gave me pancreatitis - following that was on more back to back courses of steroids and it got to the stage that they wouldn't let me take them any more and I was facing biologics which really scared me.  I'd done a lot of reading about UC and to me it seems hugely linked to the bacteria make-up in your gut, so I started a Specific Carbohydrate Diet - there's a good book on how to start it called Breaking the Vicious Circle, it's not an easy diet - no grains at all, no sugars apart from honey and you kind of have to make everything from scratch, but it forces any bad bacteria in your gut to die off (which your immune system attacks and causes the flare) and helps good bacteria to colonise.  I've been on the diet since July, when I came off my last set of steroids, and amazingly it seems to be working for me, have been off the steroids and only on a maintenance dose of Balsalazide and I'm pretty much symptom free. I also take omega supplements for inflamation and some probiotics and zinc and 4 months in it's still working and I feel so much better - might be worth a shot before you go on any really strong drugs.  Either way I hope things get better for you soon - good luck
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