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Ulcerative colitis, curious as to alternative treatments.

Posted , 6 users are following.

Sawyer9
Sawyer9

Hello. I had a colonoscopy yesterday and the surgeons are 99.9 certain I have UC. I'm seeking alternative treatments for it as I've read about the worrying probable side effects of the medication they put you on.

One thing I've heard many times that works well in treating UC is nicotine. I'm a non-smoker and always have been, but I was considering starting an E-Cig or nicotine lozenges to see if the symptoms ease. Has anyone had any success with anything like that? Or any natural remedies and such? I understand some will say I should take steroids or something similar, but I'm very worried about the probable weight gain, temporary or not, and other side effects of those, and I'm trying to avoid those if I can.

I appreciate any feedback.

1 like, 19 replies

19 Replies

  • jon13689
    jon13689 Sawyer9

    Posted

    Hi Sawyer,

                  My wife Marie was diagnosed with UC at Gorleston hospital Great Yarmouth in jan 15 she was given all the tablets such as predisolone, octasa , adcal and pentasa which helped. She is a non smoker but have not heard of ecigs being helpfull.

    Speak to your gp and seek some further advice on this one, remember that what works for one does not for others as we all are different.

                       Hope this is helpfull good luck keep in touch

                                                     Jon and Marie 13689

  • millmillx
    millmillx Sawyer9

    Posted

    Hello,

    I doubt there will be any other treatment available for the begginig as steroids are used to reduce the inflamation but after the main inflamation is reduced there are other medications available (mesalasine based). 

    I know someone with UC who took up smoking to feel better and they claim that it helps them. My doctor has hinted to me that smoking might be thing i should consider (which i thought was pretty odd) in his words "Ulcerative colitis is a non-smokers disease". 

    Good luck! 

    • jon13689
      jon13689 millmillx

      Posted

      Hi Millmillx

                  If smoking or anything else like that would help then why not try it but I would not reccomend it without some sort of advice

                                                      Good luck

                                                           Jon and Marie 13689

  • barbara80658
    barbara80658 Sawyer9

    Posted

    No but let us know please.im losing all my hair.and still no different from when I was diagnosed in June.
  • james_sull
    james_sull Sawyer9

    Posted

    I really wouldn't worry about the medication yet, you'll start off on mesalazine such as Pentasa and apart from it barely working for me I don't have any side effects.

    Steroids are normally only given to reduce inflammation as someone has mentioned to get you back on track, as for the weight gain, you do temporarily retain a bit of water in the face and neck but it goes. They do give you an appetite but its all about control which is something I'm failing to do at the moment, you can feel that crap with UC and steroids give you a bit of your life back and I just go on one eating and drinking!

    Try probiotics and aloe vera and just eat well and hopefully with the mesalazine it will stay in remission for long periods, I'd think twice about self medicating though.

    • jon13689
      jon13689 james_sull

      Posted

      Hi James

                 Which steroids are you on we are on octasia predolosone

                                             Jon and Marie 13689

    • james_sull
      james_sull jon13689

      Posted

      I was on clipper 3 weeks prior to New years eve but unlike the last time I was on them I didn't find them very effective.

      I currently on pred, 40 mg two weeks the 5 mg reduction p/w to 10 mg. I just make the best of them.

      They're trying to put me on azathioprine but it looks like a non starter due to blood tests so its going to be methotrexate for me next which I'm not to happy about.

    • jon13689
      jon13689 james_sull

      Posted

      Hi James

                  Dont blame you for not being happy about methotrexate it sounds bad the way you put it but rest assured they know what thier doing and lets hope it works for you

                                    Good luck Jon and Marie 13689

    • barbara80658
      barbara80658 james_sull

      Posted

      Hi James next time I see my consultant I will be going on azitheoprine .why does it bother you having blood took every week?
    • james_sull
      james_sull barbara80658

      Posted

      It doesn't Barbara, blood tests determine whether the drug is suitable or not and it isn't for me.

      I don't produce sufficient enzymes required to break the drug down so if I started on it, it would kill too many white cells and probably put me in ICU within weeks.

    • barbara80658
      barbara80658 james_sull

      Posted

      Ooh that's made me scared now.do they test you to see if you are suitable.i hope so.is it stronger than the other drugs?they havnt tried me on others yet.ive only had salofalk and prednisalone.they should try me on some others yet.
    • james_sull
      james_sull barbara80658

      Posted

      I seriously wouldn't fret about, apparently a very low percentage of those with UC are in the same boat, was told as little as 1%.

      Everyone is now tested before its prescribed so you are safe!

  • Maryjo
    Maryjo Sawyer9

    Posted

    Hi......sorry to hear of ur diagnosis...not pleasant disease to have....I have it 25years and have tried lots of alternate type stuff.....found stuff feb 2014 which has stopped my bleeding since .  This is first stuff which has made great difference.   Research psyllium husk and seed( seed being the one has the butyric acid which is great antiinflammatory). I take 1 teaspoon husk in form of Lepicol and 2 teaspoon seed bought of large shopping arena online....let u work that one out as am not sure bout advertising here.  Put it all in glass of water let sit for hour till it gelifies ,add some more water if necessary and drink..take it twice a day.  Probiotics are important.  If u wish u can get them from home made kefir....read up bout it .....home made yogurt is best. U need to let it do its thing for 24 hours. U can get some online info re Elaine Gottschall and 24 hour fermented yogurt. Miso has lots of probiotics....also fermented foods. U can get more probiotic from serving of miso or fermented foods or kefir than in whole bottle of probiotics. Stay away from sugar,alcohol in small amounts ....l glutamine also good for healing. Do lots of research...plenty of it online. If u have any queries get back to me. Do not start cigarettes....u will have 2 problems instead of one ! Good luck

    Mary Jo

    • barbara80658
      barbara80658 Maryjo

      Posted

      Hi Mary jo when people talk about remission does it mean no blood or no diareah if it's no diareah then I have never had remission.i get up with diareah every night about 6times.i can't sleep and sometimes have accidents is this normal for u c .babz x
    • jon13689
      jon13689 barbara80658

      Posted

      Hi Barbara,

                      I assume being in remission means a break from the effects of UC.

                     Jon and Marie 13689

    • barbara80658
      barbara80658 jon13689

      Posted

      Well then i have never had a break from it since last June.It's just Diareah every day and night .Forgot what its like to pass a normal stool.Just need something to thicken it all up. that will be the answer.

    • jon13689
      jon13689 barbara80658

      Posted

      Hi Barbara

                    The only thing I can suggest is a change in your diet, having said that I dont know what your diet consists of.

                                           Jon and Marie 13689

    • barbara80658
      barbara80658 Maryjo

      Posted

      Hi mary jo.i have sent for the S C D diet and in foods you should avoid is physilion husks I wonder why as you swear by them.xx
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