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Alternatives to Steriods, Azathioprine & Mesalazine?

Posted , 9 users are following.

katie606
katie606

Hello, I have suffered on and off with UC or the last 4-5 years, flare up's often put me in hospital and seem to range on the severe side of things. I am prescribed Steroids during flare ups and Azathioprine & Mesalazine constantly to keep UC at bay.

It doens't seem to work though, I still get flare ups. I now take no medication (against Dr's recomendations) after being fed up of taking so much everyday and feeling weary from the side effects. Especially steroids, they seem to bring on bouts of severe depression which I find even harder to deal with than the pain.

I always have blood in my stools, and always have dioreah (min 4 times a day), I suffer with pain every day, often feel sick (in fact I'm currently writing this because of the sicknes feeling - it's gross and the bus journey to work probably doesn't help), the usual, exhausted...

I now use a hot water bottle and paracetomal to ease pain (which helps sometimes but often doesn't touch it) and deal with the rest.

Does anyone have any alternatives to steroids? or and herbal type remadies or methods they use that may be of use?

any advice much appreciated xo

0 likes, 25 replies

25 Replies

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  • jill18833
    jill18833

    Posted

    You could try a good daily probiotic,turmeric capsules and dairy free diet? I use curaheat self heating patches when out and about,microwave heat pad indoors and solpedeine max occasionally when pain is bad,also drink peppermint tea. Hope this helps you x
  • gabe99
    gabe99

    Posted

    Hello Katie,

    I too have started to look at alternatives to steroids. I've been on a course of Prednisone started a few weeks ago with little immediate effect. My doctor put me on a one-week course of Rifaximin which seems to be helping somewhat.

    I just started looking at the medicinal use of marijuana and just a few hours ago received the below message from an medical marijuana advocate from Vancouver Island.

    I have no idea what the situation is in the UK (or for that matter in Canada) on such use. But do follow up and see if it makes sense to you.

    Emis Moderator comment: I have removed the rest of this post including links to web sites as we do not allow such links. If any user wants the message and more info then please use the private Message facility to request the details.

  • vivien39575
    vivien39575

    Posted

    My husband cannot tolerate any of the medicines they give you for U.C. and he was in hospital all over christmas and new year he had an intravenous drip of steroids and a course of steroids , he still had the same symptoms so he stopped all medication and has Arrowroot mixed with water into a jelly like paste and since taking it we can go out and he gets sleep at night , also he has arrowroot biscuits and complan ,we swear the medication he was taking aggravated his UC, instead of helping , hope this is of some help to you its worth a try
    • stewart21177
      stewart21177 vivien39575

      Posted

      Was he offered melasalazine, for me that is dire, gas and needing to be within meters of a lavatory. Gas, and explosive urges! I had messed myself because of it. What works for me is a diffferent type of water, you must think it strange, but came to my conclusion in a roundabout way. I drink a type of water that goes through six layers of volcanic filtration, it sorted me out! I have to have another endoscopy sometime to proove that it works, it does for me.
  • katie606
    katie606

    Posted

    Thank you everyone. It sounds like there are some good suggestions above smile starting research into the various options and will pick one to try first and see how it goes. smile
    • saraht101983
      saraht101983 katie606

      Posted

      Hi,

      I just stumbled on this discussion group, and I wondered what your outcome was Katie? Did you manage to find any alternatives?

      Your situation sounds very like mine.  Was diagnosed with UC about 8 years ago. Initially suffered only very mild symptoms but as I hit my 30s everything started going downhill.  On mesazaline and azathioprine but was having frequent flare ups requiring prednisolone (thankfully a flare has never put me in hospital - though had the last one not happened over Christmas it probably would have). Weirdly, since having my worst flare ever I'm now doing much better, despite being on the same meds.  I've even managed to put on a couple of kilos!  I've recently changed jobs and have a lot shorter commute and am generally happier at work - maybe that's the difference?! Does anyone else find that their UC is affected by tiredness/stress?

      Anyway, I just wondered what you ended up trying.  Last time I saw my gastro consultant he suggested we try humira but said that I wasn't guaranteed to get approved for it as its an expensive drug and I'm a sort of borderline case.  I'm due to see him again next week and am now worried that because I've been better he wont want to try that any more.  Which I suppose makes sense, but I live in fear of more flares, particularly as last year I ended up having a pretty serious DVT as a result of flare/steroids! So to add to the list of meds I'm already on I'm taking Warfarin too. :-( 

  • Maryjo
    Maryjo

    Posted

    Hi Katie

    I have uc for 25 yrs have tried most things for cramps bleeding . During my last flare I came across this in a forum ,tried it and have had no bleeding or cramps past month . One tsp psyllium husk ( I use lepicol with probiotic in it and one tsp of psyllium seed --- only place online to get it is ' just ingredients ' I also put one tsp of hemp protein . I make it up evening time in water and leave it to next morning. I put two tablespoons kefir which is optional as lepicol has probiotics in it. I drink same which is slightly gelified but tastes ok. U can make up another batch to take in pm if u wish . I took it twice a day initially but now once a day and what a difference it has made. I am careful with diet .... I am sensitive to gluten so take gluten free bread, very minimal fruit , sugar and sweets minimal alcohol minimal as well. Having said that since taking this mix I can tolerate these things a bit better. For pain relief I take 30/500 co codamol, just in half tablets if I'm crampy .

    • jill18833
      jill18833 Maryjo

      Posted

      Hi Maryjo,thinking about you today! How are you doing,very well I hope! Having a few issues with my Proctosigmoiditis,as soon as I try to decrease Asacol/ mesalazine enemas ,the blood rears its ugly head! Not a lot,just on toilet paper. Still get a lot of pains and taking Solpedeine/co codamol! Tried keeping food diary but nothing particularly seems to cause pain so eating mainly what I fancy! See a lot of people can't eat certain foods,is that because of diarrhoea? Lucky I suppose I never got that, just initially urgency/mucus etc. Just upped Asacol, enemas etc and thrown a daily suppo into the mix as I obviously have imflamation there. Bit concerned having to take max dose of Asacol etc but needs must I suppose! Hope you are ' a new woman' and things are going well xx
    • Maryjo
      Maryjo jill18833

      Posted

      Hi Jill....yeah I'm doing quite well thank u except for perineal wound post surgery which I cannot get healed. It was nearly healed until weekend and worsened again. It is not terribly large but i had got it down to a pin hole but it's now few mms wide again. Know it's not too big but it's a nuisance. Anyway apparently they say these things can b a nuisance to get healed at times so shall keep trying . That's unfortunate u r having symtoms and having to juggled meds. Yeah u can get diarrohoea but also cramps from stuff that annoys u. I can eat most things again...my fruit and yogurts which I had been able to tolerate. Managing the stoma quite well so far. Thankfully. Still tired at times but it can b 6 to 12 months b4 u r in peak form again. I'm a helluva lot better than what I used to b like. Hope ur symptoms settle soon for u x
  • jill18833
    jill18833

    Posted

    Hi Maryjo,do you mind me asking how often you take co codamol for pain? I was advised to take paracetamol for my proctosigmoiditis pain but it doesn't touch it. I have found co codamol or solpedeine best for pain relief but worried about the long term use? I seem to get pain every second day at the moment so wouldn't use them every day. Find it hard to contact the gastro consultant for advice but this pain is impacting on my day to day life and causing me anxiety. If I can safely relieve the pain I am sure I will relax a bit. Thank you for your feedback
  • gabe99
    gabe99

    Posted

    Hello Jill,

    Just an idea to try to get some help from your GI doc. I've had a long-term relationship with mine and I occasionally phone his secretary with a question, she asks him and calls me back with an answer. You might want to try that and see what happens. A decent doc will give you an answer to a simple question like you have if he knows your situation. Worth a try.

  • jill18833
    jill18833

    Posted

    Thank you gabe99,will give her a call x
  • Maryjo
    Maryjo

    Posted

    Hi Jill

    When I was in severe pain I would have taken possibly 4 to 6 tabs per day. I'm afraid I do not do pain . As long as u do not exceed 8 tablets per day. The paracetamol is dangerous if u exceed the 8 per day and anything with paracetamol should only be taken at 6 hrly intervals if it's at it's max dose. Codeine can be addictive for some people but personally speaking I did not find this. Pain in itself can be very tiresome on ur body and put u in bad form and also make u feel down .

  • jill18833
    jill18833

    Posted

    Thankyou so much Maryjo. X
  • Maryjo
    Maryjo

    Posted

    Forgot to say Jill u might as well be eating smarties than taking paracetamol on its own . It's very effective for pain if given intravenously but not orally when u r suffering moderate to severe pain. I remember when I was having mega flare with pain years ago and admitted to hospital I had to have pethidine injections as pain was so severe . Codeine is also supposed to help with the diarrhoea as well as relieve the pain.

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