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I'm new to this site and to any forum/discussion on Crohn's and UC, so please excuse any ignorance and/or stupidity!
i was diagnosed with both two years ago after many years of feeling unwell. I always assumed what I was feeling was 'normal' or at worse IBS. I was visiting the toilet 4-5 times a day when in remission but at times of relapse (twice a year on average for about a month at a time) I was needing to go 15+ times. After having a nightmare with being seen by doctors, back and forth with no clear diagnosis and treatment I was finally out on Pentasa, which made me quite Ill and so I was moved onto a similar drug (can't remember name as I was only on it for a day) but this did the exact same thing. I was prescribed prednisone during my flare-up which I took and did relieve some of the symptoms but obviously not for the long term.
Since then hen I was moved onto azathioprine at 50mg a day for a week, 100mg for the next and then. 150mg from then on. My bloodwork all seemed ok whilst on aza but after hitting max dose I became violently ill, sickness, diarrhoea, fever, even speaking in tongues. This only lasted a day or two and I stopped the course. I was then moved along in a side step to mercaptopurine which after 1x50mg pill put me in hospital with acute pancreatitis. Worst pain I have ever felt, but morphine is one hell of a drug!
i have recently left hospital but have not returned to work. This whole ordeal is having quite the detrimental effect on my physical and mental health. It's vexing that this period of my life where I am sorting my condition, has actually made me worse than I ever have been. I have gone along with specialists and doctors with these treatments , despite the ridiculous list of scary side effects (i assumed that all meds can have nasty side effects and they were just covering their backs).
i have just left the specialist today and been prescribed methotrexate alongside frolic acid, but can't take them until my blood tests come back and until I have had another briefing from nurses in regards to side effects etc.
reading through these discussions it is reassuring that I'm not the only one who seems to have a negative reaction to every treatment prescribed, but it. Really does get to me. A lot of people don't understand how nasty it can be and my work is one of those. Though I have just started to realise that my health is more important, and stressing about this is only going to make things worse.
I dont really ally know what to do in terms of next steps, as I have kind of gone along blindly with anything doctors have recommended, but nothing so far has worked.
ive lost 3 and a half stone since diagnosis, constantly tired and I haven't felt 'well' since I was at school. I am now 25 and am struggling to see an end or any sort of light at the end of the tunnel. Sorry to bang on and on, but this is the first time I've been able to out down how I'm feeling, especially with people who are in the same boat.
Any sort of reassurance or similar experiences or anything would be much appreciated. It's great to read that I'm not alone in this!
Thanks if you have taken the time to read this essay!
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