Codeine and ulcerative colitis

Posted , 6 users are following.

Hi,

I'm 24 years old and was diagnosed with ulcerative colitis last year and have not experienced full remission as of yet I've tried several drugs including pentasa asacol prednisolone enemas and I am currently taking azathioprine. Although, following my first colonoscopy in November last year a severe flare up ensued now none of the above appear to relieve any symptoms apart from codeine. However, following the recent advice received from my consultant who advised strongly against it's use due to the risk of perforation of the bowel within 24 hours my symptoms exacerbated extensively. Increased gas, watery yellow stools, bowel frequency and of course increased pain from cramps. Therefore I have decided to go against his advise and take 90mg in the morning and 90mg at night which restricts my movements to just the morning. I feel as though my consultant is biased to NHS regulations limiting his perception and ability to experiment, is anyone using or know any using codeine for U.C ??

Thanks,

Paul

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7 Replies

  • Posted

    Hi Paul, I'm so sorry to hear you're going through flares - especially with all the meds you're on.

    Have you changed your diet at all?

    I find that lack of sleep, stress and poor diet lead to my flares and sure many other UC sufferers would agree. Certain foods are evil for UC - onions, garlic, sausages (fatty meats), ice cream, chocolate. It is worth severely limiting your alcohol intake too. Booze up = flare up.

    I can see why you are wanting to take codeine - be careful though as this is after all an opiate and you're just clouding the pain with strong painkiller and it will wreck your liver.

    Ask to see a dietician at the hospital instead.

    Good luck!

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    • Posted

      Hi Rapha,

      When I fell ill I was an avid gym goer and my diet was fairly strict tbh although I have played about with it a bit dropping certain foods and such but no significant results. I haven't seen a dietician yet though, but as u say alcohol is generally a no go and also for me chillie. Supringsly though since I have used codiene I seem to be able to tolerate these.

      I agree codiene is not an ideal solution and really just a temp. Fix although in terms of medication from what I have seen every med used is just swapping one evil for another.

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  • Posted

    I was given it before being officaily diagnosed by my GP to stopp the case of the trots.  Needless to say that didn't work oprior to my first colonoscopy and being somewhat atypical in symptoms nothing worked or only gave enough relief to 'travel' somewhere.  I was bunged up even with a huge flare (IBS playing a factor here) where I could put out two ends of the poo spectrum chart at the same time with loads of blood and no codiene at that point.  Octassa and pentas did not work.  The Predlisone enema burnt me terribly.  Even after enduring the IBD nurse and her attitude, I wish I'd pushed harder then as it feels as though it's spread somewhat.  She said knowing neither the octassa and ultimately the pentasa wasn't working well enough to do nothing - blocking me from seeing the consultant and then had the audacity to tell me... oh no.. you wouldn't want something stronger. She is on my list for being laxidazy and remiss in her duties - dismissing everything.  I'm still quite angry about that.  I had the prednislone tablets then pumped right into my system as I was in a bad way. I'm still quite achey but the bleeding has finally stopped after 10 months and hopefully it is on the way to healing and I won't lose my bowel as a result of this nurse doing nothing.  I had even written and asked that nurse to pass something onto the doctor and she felt she had to dismiss and comment on it and I wrote her back to tell her I was not inviting her  to comment but to do as I asked.  I believe she has not done so . The only way I got something done was to write the docor directly and asked my GP to do the same and put everything on file as mine was a comedy of errors at MY expense.  Don't take no or leave it.  WRITE WRITE WRITE.  Copy your GP in if you have to.  If it's not the head consultant - then write him directly. I'm keeping and have correlated a paper trail now about my experience with it all. Sorry I sound a bit militant but I went a bit spare when something that should have been dealt with wasn't....
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    • Posted

      Nono it's fine, I understand how you feel. When I was first diagnosed I had no idea what was going on. I had never heard of ulcerative colitis before, but from the word go it's been a fiasco. I researched my symptoms and possible illnesses within the first month and after doing so and watching a few uploaded videos on youtube of U.C stories I made a confident self diagnosis and relayed this to my G.P who dismissed the notion as U.C is "genetic" leaving me with a flare up for 4 months untill I was "officially" diagnosed and started on steroids... from my experience with all NHS "specialists" is that you cannot rely on them take their advise as more of a rough guide, the information is out there u just have to look, what annoys me is if they are going to provide the NHS atleast do so proficiently! It may be free at point of use but we all still have to pay for it with taxes!!
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  • Posted

    Be very very careful as you can end up having emergency surgery. You could be impacted further up your colon and be having overflow diarrhea maybe on a Friday night take a laxative prescribed by your consultant/ibd nurse or GP (and stay home). I think we all take co codimol at various times but not on a regular basis. Was diagnosed July 2015 and still bleeding have had prednisolne azathioprine Iv steriods hurmia injections now just started Entyvio next step is surgery which I really do not want but am fed up with all the bleeding and pain
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    • Posted

      Hi Helena,

      Thanks for your reply, yeh from the research I have done, codiene can lead to perforation of the bowel, although it will initially cause distention. I think keeping my dose down to just 3 in the morning and 3 at night is a relativley safe dose. But yeh, it isn't solving it is just merely masking but the reduction in bowel motility is definitely something that should be capatlised on. I will be trying some alternative medications as from what I have doscovered U.C is very individualistic and u can't rely on NHS protocal - steroids, immunosuppressives then surgery. I am not willing to accept that. Despite having met several people who have had surgery and are very please they did so. However, I am not ready for a bag and parting with my colon!

      I know how you feel, when I am in the midst of a severe flare it does appear as though surgery is the only logical option. Virtually living in the bathroom in complete agony, shattered yet unable to get more than an hour or so sleep before u need to go again.

      Though if u too are like me i suggest to research as much on alternative therapies as you can... something that is worth considering is feacal transplants to restore healthy flora, I asked my consultant to refer me to addenbrooks but was unfortunately rejected.

      Hope you get ur U.C under control soon.

      Paul

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  • Posted

    Hi Paul

    Sorry your symptoms are so difficult at the moment.

    I was diagnosed with UC 15 years ago. My consultant gave me codeine. I used 4 tabs twice a day for 10 years. However I used it together with loperamide, over the counter it's called immodium. I did not experience perforation or have any liver complaints. I had regular blood tests and nothing untoward was found during that time. If you use the two together you will get some control over your symptoms. Please ask your doc for this. You can take alot of this without any side affects.

    I hope you start to feel better soon. Alison

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