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Medication not working

Posted , 5 users are following.

hollies
hollies

i got diagnosed on 29th December 2014 with severe ulcerative colitis. I'm 17 and all medications seem to be failing. I am on inflixamab every 8 weeks, asacol, salofalk enema and iron tablets. I started on steroids which gave me very bad side effects. I was then taken off steroids and admitted to hospital as I lost a lot of blood etc and was given inflixamab, I've now had 3 infusions as well as taking asacol 400mg 6x day and I started azathioprine 4 weeks ago. I then became violently ill with taking azathioprine and was vomiting 6 times at night couldn't eat or drink for 9 days until I went to a&e and they explained to me that my pancreas was slightly inflamed aswell as my kidney and I'd dropped to 49kg from 52kg in that space of time. I was advised to stop taking azathioprine until my next appointment with my consultant. I also had a sign of infection in the body and had an extremely bad pain in my right shoulder when I breathed, coughed or sneezed heavily. I had 2 courses of antibiotics and it still hasn't subsided, I had a chest x-Ray and a black endow appeared on my right lung where I had the pain. They now have postponed my inflixamab as the hospital now want to do a CT scan but their is a waiting list. I'm still bleeding, still in constant pain never leave the house due to being unwell and it all seems like it's getting worse. I'm very anaemic still my blood count is 87 and my white platelets are very high. I take iron tablets but they seem to do no justice. I'm terrified of the thought of surgery

0 likes, 4 replies

4 Replies

  • donclaudio
    donclaudio hollies

    Posted

    Hollies,

    I am not qualified to provide you with any protocols. IMO your not being helped by your medical team...have witnessed this before although in Guam...not the UK or EU. I would take my 17 year old son/daughter to the ER with  medical masks on the both of us, advising medical personnel he/she may have TB...this will get their quick attention and a fast track to the CT and  importantly to the proper medications/treatments. Claudio

  • Lauraaliceflo
    Lauraaliceflo hollies

    Posted

    Oh you poor thing ur clearly having a terrible time with this rotten disease. Did they give u anything else in hospital or just the infliximab? I had a bad flare recently and was in hospital for 2 weeks, the first week I was on hydracortisone intravenously x4 a day then put on high dose of prednisolone, eventually got it under control, although they're both steroid treatments so not sure if that's something u can't tolerate. I was put on azathioprine last year but like you it gave me pancreatitis - definitely don't take any more azathioprine as pancreatitis can be very serious - bloody painful too took me a good 4 weeks to get over. Only thing I can suggest is getting in touch with ur consultant, not easy I know but they should be taking the lead in this and shouldn't just leave u feeling this bad, tell them u need a plan of action in place urgently and let them know ur scared and feeling in the dark, they need to work with u. My consultant was really good recently - he listened to my concerns and explained a lot about my options etc. I know it must be so hard to deal with feeling like this, especially when you're only 17, I really wish u the best of luck and try to stay positive, even tho it feels like someone's pulled the rug out from under u xxx
    • hollies
      hollies Lauraaliceflo

      Posted

      I was on hydrocortisone intravenous 100mg 4x day but I had terrible side effects with my mind feeling very depressed couldn't stop crying ect I was the same with prednisolone, so then I was given inflixamab. Their just leaving me until my next clinic appointment, I was supposed to get inflixamab on the 5th but now I have to wait for the CT scan as they want to further investigate the shadow on my lung
    • sheila91262
      sheila91262 hollies

      Posted

      Hi Hollies I feel very bad for you, has anyone suggested blood transfusion to you? I wouldn't rely on iron supplements as they irritate the bowel and are a long term solution not quick enough to help you feel better. My son waited as he was told and his body was shutting down from malnutrition and anaemia when he went to  A&E and just about made it through. I have posted his story under UC and DVT. Do please note that IBD sufferers are prone to DVTs as blood is thicker, not alldoctors take this into account.

      As you sound so unwell I would speak to your GP about going to the centres of excellence for IBD, St Marks London or John Radcliffe Oxford.Good Luck.

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