18+ week flare up

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Ok here goes I was diagnosed with UC July last year and I have ulcerative proctitis. I am currently on a flare up for over 18 weeks with passing blood, pains in my stomach, cramp pains, chest pains now and again, feeling sick some times and getting headaches. My gp put me onto 50mg prednisone steroids but didn't work and am also on tablets for IBS. Enemas don't work nor do suppositories. If medication doesn't work like it hasn't what is the next step to get this cleared up and to feel normal as possible.

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  • Posted

    Derek - I struggled for 3 years and after 2 serious flare ups this year and an unsuccessful infusion of Infliximab things got so desperate I had surgery to remove my Colon. That was on 23rd October and I'm recovering steadily with my life almost back to normal. In my case I had little choice but bearing in mind the agony I suffered I have no regrets in having the operation. Coping with a Stoma is no big deal and best of all the Steroids, Immunosuppressants, enemas, suppositories and granules are all a thing of the past. Clearly there may be other options for you. I hope this helps and wish you all the best with you future treatment.
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    • Posted

      Thank you for answering back Darasdad1. This is my second big flare up this year and the only way the first one was stopped was being admitted into hospital and having steroids through IV. Since I've been diagnosed last July I've not had a remission period and am getting depressed about it all now.
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    • Posted

      Hi Hope that all is well with you.

      I think that surgery might be my only option!

      How long has the recovery time been and are you having the second operation

      Helena

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    • Posted

      Helena - things are going well. It 6 weeks since the operation and my life is returning to normal, I'm a bit frustrated as I can't do much physical work yet because of the risk of a hernia. I've not made a decision about what to do next although it is in the back of my mind. 
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  • Posted

    Hi Derek. sorry to hear you are having a miserable time with uc. have a look at the crohns & colitis uk website. luckily my colitis is controlled currently by meds (aminosalicylates), but there was a time my consultant thought i may have to go on immunosuppressants. crohns & colitis uk site says if aminosalicyclates & steroids have failed, then gastro consultants usually then consider trying immunosuppressants, then biologics if they fail too. my consultant mentioned 6-mercaptopurine- one of the newer immunosuppressants that have less side effects & are often better tolerated by patients(but everyone is different). Might be worth asking your consultant about this drug before you start thinking about surgery. personally i would exhaust all the drug options first before considering surgery, as often is just finding something that works for each individual. hope this helps, take care.
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    • Posted

      Hi looloo43 I've got an appointment at the hospital next week and a few times they've mentioned me going onto azathioprine but the kept changing their minds, so nex week is gonna be really interesting. Thank you also for your advice on this, always nice to get other people's views and opinions on this.
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    • Posted

      Hi Derek. maybe bring up about the 6-mercaptopurine at your appointment. I think you have to be off steroids for a few weeks before starting immunosuppression meds but your consultant would know about this. do have a look at crohns & colitis website before you go though- they say azathioprine is one of the harsher ones, & that's where i started finding out about mercaptopurine. they have various "online leaflets" you can read about meds & treatment paths for colitis-very informative, & helps get you clued up a bit before seeing specialist as you do have a say too. they often have a "first line" of treatment using a particular drug first eg azathioprine, but 6-mercaptopurine is known to be gentler with side effect & more tolerable, but may not be there "first line" treatment on their protocol perhaps because it may be more expensive, but if you prefer to try that one because you have read about it yourself, they are usually willing to agree a treatment plan with you. if immunosuppression doesnt work, they still have biologics (see crohns & colitis site again!) up their sleeves to try before having to consider surgery. i know a lady that is on 6-mercaptopurine & has been for about 4yrs-it has given her a new lease of life with controlling her colitis, she works, goes on holiday & dance classes! she does not suffer any side effects, but tries to keep away from people with colds due to her immune system being suppressed by the drug. hope this helps & remember you do have a say in your treatment, you don't just have to go along with nhs protocol, & my consultant was willing to agree/try particular meds with me when i was not under control.
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