Ineffective Medication?

Posted , 8 users are following.

Hello guys, I have Ulcerative Colitos and have had for around 2 years, diagnosed 1 year ago though. I'm still going to the toilet around 10 times a day, on a good day. I'm at my wits end with it to be honest now, I feel like I can't leave the house in the worry of needing to go to the toilet and there isn't one/a clean one.

I'm just asking you guys have you had any medications that haven't worked, but finally found one that has? Minus predisolone. I've tried Asacol and that made it worse, I'm currently taking Azathioprine, doesn't seem to do much, rectal foams, don't do anything. Has anyone else had similar experiences with their medication and if so what do you take now and how has it affected your UC?

Cheers guys

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12 Replies

  • Posted

    What is your diet like ? I have learned that is key in this disease. There is hope. I was only on medication for 4 months. I had it for two years now. Not on medication and totally changed my diet. I also take probiotics such as acidiphilus or even a daily probiotic with stronger count. Finding medication is not easy. I only went through two until I had enough of their awful symptoms. I then began my own research. Don't give up I hope I can help
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    • Posted

      My diet is not brilliant but far from terrible, I think it would be easier if you could shed light on what your diet consists of? My main worry is fizzy drinks, I have a feeling they do not help the problem at all.
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    • Posted

      I have cut out sugars. Sugar and uc do not mix well. I do not eat fried greasy foods or fast foods. No artificial sweeteners or drinks. I basically eat vegetables fruits and meat. I drink water and almond milk. I occasionally have those bad things or candy but not often. When I do it is in moderation. I look at it as a cheat from time to time. try a yeast/gluten free diet for a few weeks I promise you will see some results
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  • Posted

    Hi Alex, i have found that Azathioprine made me quite ill. It depressed everything about me and i have had some awful pyloderma gangrenosium leg ulcers from taking the tablets. I am currently on Aresnic suppositories prescribed by my gasterenterologist, along side the Mesalazine and iron tablets, that seems to be doing the trick. I did have an 8 week dialasis course where they removed blood from one arm, filtered it and put it back via the other arm. This lowered my immunity and seemed to help. Good luck, and don't be afraid to ask for a change of meds if the current ones aren't working. Different people react to different meds, if there was just one thing that worked, it wouldn't be such a complicated and tricky condition to manage. Don't give up, you will get there!!
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    • Posted

      I've booked to see my consultant asap so I will be asking for a change definitely, glad to hear yours has got better. I just hope I find something fairly quickly, not the easiest life to live with this condition as we all know I guess.
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  • Posted

    Hi Alex, I've had uc since nov 12 (& probably undiagnosed bit before that). I am now on my 4th different med last 8wks(minus steroids now). Its called ipocol which is a form of mesalazine that my mum (also has uc) has been on for 13yrs with success, so my IBD nurse is giving me a try on it before resorting to immunosuppressants. I am getting on quite well with now, takes a good 6wks to see significant improvement though. There are quite a few different mesalazines out there that treat different areas of the bowel, & also have different coatings & release formulas which can be what makes the difference - some suit one person, but not another. The 1st 2wks I took these, they were going through me partially intact when I was taking them after food. When I tried taking them on empty tum with a pint of water, they absorbed properly & just got tiny parts of disentegrated shell in stool, so even how you take some meds can make a difference. Before this, I was on balsalazide for a couple of months which were very good for a short time until I flared again following an exceptionally stressful time at work, so whilst they were good at getting remission, they weren't good for maintaining remission, & couldnt get it back under control without steroids, & you can't take steroids as a long term measure. But everyone is different & stress is a common trigger for uc flares. I have also changed my diet a bit; the only veg I can tolerate is slightly overcooked broccoli, sliced green beans, & mashed carrot/swede. Anthing with skins, seeds, raw veg, & all fruit & sald except iceberg lettuce eliminated. I dont drink many fizzy drinks, but can drink a small glass of diet pepsi with my dinner with no problem. I find milk & probiotic yoghurts soothing on my tum & at least they give you some nutrition & protein if you dont fancy a sarnie at lunchtime, I know appetites can be a bit erratic with uc. a nice tolerable snack is pro bio honey greek yoghurt with 2 or 3 plain hobnobs dunked in them! Hope this helps.
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  • Posted

    Just a couple of comments.  I'm in a similar situation now after being treated for UC with Prednisone for several weeks.  It has suppressed my active UC, however I'm still going to the washroom five to ten times a day.  I suspect that what I now have is Irritable Bowel Syndrome and am looking at modifying my diet.  Do look into IBS and how to deal with that.

    As well, when I go out I take an Immodium pill and it gives me relief for six or so hours and make going out much less stressful.

    Good luck!

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  • Posted

    Actually, I should've added what Gabe just suggested I do the same if necessary- I am having a not so good day today & had to go out, & took 2 loperamide tablets (same as imodium) as had quite urgent diarrea today. this allows you to go out without worrying about accidents or embaressing rushes to find a toilet
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  • Posted

    Well I don't know if this will help but, I'm 14 and have had UC ever since i was 8. But I have been on so many medications that my only steps left are either Azathioprine or Surgery to remove my large intestine or colon. But on medicine that has helped tremendously and I am still on it, it is called Mesalazine or Pentasa, I take 2mg 2 twice a day. You should try it, I am now able to eat what ever I want without worrying. It also helps with urgency.
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  • Posted

    I won't repeat all the diet advice but maybe web search a low residue diet, it might help. I didnt know if doctors still prescribe this but I was given codeine phosphate to slow the bowel as Imodium didn't do much, it works but maybe you might not want to be on codeine all the time but as and when maybe, at least if you want a holiday or have an event to go to. I could even manage India for a holiday!
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  • Posted

    Just a word on fiber.  I dind't realize until I met with a nutritionist that there were two types of fiber.  Soluble and insoluble.  Insoluble fibre is bad if you have UC.  It includes such things as the peels of fruits and vegetables including tomatoes and peppers as well as strawberries and raspberries.  Soluble fiber includes the rest of the fruit and vegetables as well as bananas and others (do check).
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  • Posted

    Hi... U r having a rough time. I have it about 25 years.....after many trials of lots of different things I now use psyllium seed [for the butyric acid] and psyllium husk the one with probiotics. Lepicol do good one. mixed in water once or twice a day....it releases butyric acid which coloncytes in bowel love...acts as an anti inflammatory and I have had no probs since I started using it jan time. I also careful with diet ...sugar related stuff small amounts if at all ...fruit because of fructose I keep limited....yogurts once in a blue moon and probiotic drinks etc are a no no becos of sugary substances. U are better with probiotic capsule. Alcohol not great either. I am on asacol tabs and suppos occasionally. Take tesco or asda Diho tabs ...they are cheaper than imodium. Good luck
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