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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

    Hi Maryjo,thanks for your reply. Had a docs appt yesterday and she agrees it's strange I'm having a lot of pain whilst in remission. I told her I suspect the Pentasa is causing me problems and that I was tempted to stop them for a while and see,she said do it then(sure gastro consultant won't be impressed but hey ho)! Will use enemas nightly for a while and see. She also said no probs using co codamol/solpedeine daily if necessary,although they prefer co codamol as solpedeine has extra salt in apparently. Will give it a week or two and if pain improves I will contact consultant to see if there is an alternative to Pentasa oral that I can try. Thank you for your help x
  • Maryjo
    Maryjo

    Posted

    I had been on Asacol anti inflammatory for number of years and then changed to Pentasa by my GI as I felt the Asacol was not that great but probably my imagination! I was the very sorry lady ! The Pentasa nearly killed me with wind pain and it took me several days to realise it was the cause of it. Absolutely dreadful stuff in my case. Stopped it and within 24 hrs pain had settled. Went back on my Asacol. I actually researched round re both and Pentasa is used more in the case of Crohn's disease .
  • gabe99
    gabe99

    Posted

    Hello Katie and others,

    I don't know if this will apply to anyone else, but I've had uc for years and had a flare up recently. I must add that I had a liver transplant fourteen years ago and am on anti-rejection meds. This makes one susceptible to CMV infection. The doc tried prednisone starting with 40 mg reducing by 5 mg per week. After four or five weeks didn't seem to be working. (ten to fifteen washroom visits a day). Then my GI doc put me on valganciclovir for three weeks for the CMV (while continuing with prednisone) and after a week my diarrhea seems to be gone from one day to the next! 450 mg x 2 tablets twice a day.

    Amazing. So anyone on immunospression meds having a flare up might want to discuss this possibiity with his/her doc. Mine did a sigmoidoscopy and took biopsies but found no sign of CMV, but said that it doesn't always show up and it appears he got it right. It's been a tought few months!

  • jill18833
    jill18833

    Posted

    Hello again Maryjo! After telephone conversation with my GI regarding almost daily abdominal pain, he has suggested I try Asacol 1.5 instead of Pentasa oral. I will continue with Pentasa enemas and try the Asacol if I have signs of flare,so fingers crossed! Didn't realise you also had pain with Pentasa,makes you wonder how many others are affected by it? Do you have abdo pain on Asacol? What other meds are you on? Do you take probiotics etc? So nice to chat to a 'buddy' on here,hope you don't mind,keep well
  • Maryjo
    Maryjo

    Posted

    Hi Jill

    No I don't mind as I no how debilitating uc can b and I am prob one of the lucky ones that has found something to relieve mine.

    Yes I googled and some people do suffer with pain with it.

    No Asacol does not cause abdominal pain in my case .

    At present I take Asacol 2 tabs am and two pm. I take the Lepicol etc. that I told u about which has been my saviour .There are probiotics in Lepicol the box with the green wrapper and then there are numerous probiotics in the Kefir I take. You can google Kefir for benefits. Doms kefir site goes into quite lot detail. He seems to be the Daddy of Kefir for his knowledge. I take Vit c 1000mgs gaily, Vit B complex couple times a week , fish oil capsule daily. I also take supplements for osteoporosis which I have had for number years but that's another story. I started taking cabbage juice and I take Bone Broth which I make myself --- couple times a week. It also is good for uc sufferers. A batch if u make it will do u few weeks. Again there are recipes online. It's not very expensive to make. Hope u feel better soon .

    Mary Jo

  • Maryjo
    Maryjo

    Posted

    Jill

    Also forgot to mention I do yoga as well which i find generally beneficial .

    MJ

  • jill18833
    jill18833

    Posted

    Thank you again Maryjo,you have been really helpful. Day 5 off Pentasa for me and feeling good,fingers crossed,keep well x
  • Maryjo
    Maryjo

    Posted

    That's great I'm delighted to hear u r feeling well ! It makes life a whole lot better x
  • adelelisa1981
    adelelisa1981 katie606

    Posted

    Hi Katie.

    How's things going?

    Doctors want me to start on Azathioprine but I'm very very frightened of all the side affects, so at present I'm having Chinese acupuncture and taking a probiotic tablet which contains 4 billion friendly bacteria...

    I have no pain with my crohns, no bleeding, only go to the loo usually once a day BUT my inflammation levels came back very very high!

    I don't know what to do for the best... I've had crohns 13 years and never had any medication xx

    • stewart21177
      stewart21177 adelelisa1981

      Posted

      Hi! Recently had another flare up of UC, they gave me Azathioprine scrip, but was warned off it by an ex-sister tutor, had got to my solution of UC by a different route. But I find altering the type of water I drink has stopped any flare up I was having. I drink that water that goes through six layers of volcanic filtration, it tastes very soft, and returned my bowel habits to normal, honestly, for me mine started due to a RTA, and coma, that mucked me up. It wouldn't do you harm to buy the water in six 1.5 litre bottles. 
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