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Need advice on what to do next!!!

Posted , 10 users are following.

Miss_uc2015
Miss_uc2015

Hi

I was diagnosed with UC in April this year. I started on prednisone and Mesalazine immediately. The prednisone worked really quickly however as soon as they started to cut the dose my symptoms came straight back. I have been up and down on different doses of prednisone but was told I'm steroid dependant. My specialist has then tried me on two immunosuppressants with the hope of taken me of prednisone. I have tried both azathioprine and Mercaptopurine and unfortunately had allergic reactions to both medications 4-6 weeks after starting treatment so was removed of azathioprine first and then tried Mercaptopurine which I was recently removed of also. As soon as I was taken off the Mercaptopurine my symptoms have come back and I'm bleeding so much. So my question is what's next?? I don't want to go back on prednisone due to the side effects and I was just on it for 7 months straight. Has anyone had a similar experience? What did you specialist suggest next?

Also really interested to know if anyone has had success changing their diet or introducing a exercise routine that has helped manage their disease?

Thank you 😥

0 likes, 19 replies

19 Replies

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  • helena108
    helena108 Miss_uc2015

    Posted

    Have you had Iv steriods or looked into inflixamab or cyclosprorine seem to be having the same problems and am going to ask about these at my next appointment. Just want to get bleeding under control
    • Miss_uc2015
      Miss_uc2015 helena108

      Posted

      Hi Helena

      I haven't tried any of the above however have read about them. I would love to hear people experience with any of these.

  • helen_73491
    helen_73491 Miss_uc2015

    Posted

    Hi there so sorry to hear your really poorly this illness is just horrible and I understand how you must be feeling,I was diagnosed with colitis about three years ago after I was so poorly and was rushed to hospital as I had a high temperature and was bleeding badly,I'm feeling much better at the moment although I was quite poorly in the summer months,I'm now taking asacol 800 mg 3 times a day and have to say this has really helped me my bleeding has stopped and so has the diarrhea thankfully,don't get me wrong I still get my bad days but am coping much better now, I'm also using mesalazine suppositories every night before bed which really help also,I think diet plays a big part to as I've found there's alot of foods I can't eat now so I tend to avoid them but I'm still learning myself what I can and can't eat but I'm finding it easier to manage now as long as I stick to the foods I can eat which isn't always easy especially as I used to eat out alot anyways I hope this helps you,its nice to know your not alone and there are others out there,take care and good luck x
    • Miss_uc2015
      Miss_uc2015 helen_73491

      Posted

      Hi Helen

      Thanks for your response. I haven't heard of that medication. I'll look into

      It. Glad to hear your feeling better. It's such a long process for some. Some are so lucky and others have to try everything under the sun.

      Everything I read and have been told says exercise and diet doesn't help but I'm prepared to try anything. I'm so over been sick.

      We also use to eat out a lot but that's becoming very difficult.

      Hope you remain in remission. Thanks for your advice.

  • Lauraaliceflo
    Lauraaliceflo Miss_uc2015

    Posted

    I was in a similar situation last summer - had ended up on back to back courses of steroids as I flared as soon as the dose was too low/course ended and am highly allergic to azathioprine so was facing biological which I wasn't keen on trying if I could avoid them. Half way they my last course of prednisolone I started the specific carbohydrate diet and thank god it worked for me - had 8 months full remission when I started it - amazing and felt brilliant. Seems to keep the UC in check for me but I do seem to get bad flare if I catch a stomach bug, however a 6 week reducing course of pred sorts it out and sticking to the diet I'm ok. FYI diet does sound a bit impossible at first as it talks about everything u can't eat but there is still loads of stuff u can eat and u can make lots of substitute food - might be worth a try. I didn't believe it would work for me and was amazed that diet could fix this for me - good luck and hope u feel better soon x
    • Miss_uc2015
      Miss_uc2015 Lauraaliceflo

      Posted

      Hi Laura

      Interesting. Where can I find more information on this diet? Is it a carb free diet?

    • Lauraaliceflo
      Lauraaliceflo Miss_uc2015

      Posted

      It's no grains (wheat, rice, cereals etc), no starches (potatoes etc) and no refined sugar. Sounds impossible at first but once u get going on it it's fine. I use nut flours and butters to make substitutes like bread, muffins, pancakes etc, and there's quite a bit of cooking from scratch, but on the plus side it's a really healthy diet and most importantly haven't had to go on biologics or lose my colon 😀 if u type in SCD diet to google u should get a fair bit of info. Good luck x

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  • cjb106
    cjb106 Miss_uc2015

    Posted

    I can't add much as I am only just diagnosed so being tried on Mesalazine and Prednisolone in first instance. But I did have a good chat with a guy from Crohns and Colitis UK today and he pointed me to their advice leaflet on diet. I won't post a direct link as it will send this post into moderation but it's easy to find. He made it clear that there's no easy diet route, everyone is different but there may be some pointers in there.
    • Miss_uc2015
      Miss_uc2015 cjb106

      Posted

      Great thank you. I have had a little look online but found most things said it doesn't make a difference. But I disagree. I'm worse after certain foods and feel maybe if I eat a lot less and healthier it may help. Worth a try before I'm going down the surgery stage.
    • cjb106
      cjb106 Miss_uc2015

      Posted

      Yes, I've found sites that say diet makes no difference but I am inclined to agree with you. I'm a lifelong vegetarian and looking at some foods that are labelled as possibly bad for UC, I'm wondering if my veggie diet full of beans, fruit, green veg and nuts could have triggered this. Anyway, lots more info on all aspects of UC on that site including a lot about different drugs so worth a read for that too. I don't know where you are but if UK then a call to them might help. I spoke to a guy called Barry who was exceptionally helpful.
    • helen_73491
      helen_73491 Miss_uc2015

      Posted

      With the food side of things I've found there is quite alot I can't eat and have read different stories about how diet makes a difference and I definitely think it does and so I tend eat alot more healthy, I usually find these foods I can eat but it will be different for everyone,fresh skinless chicken breast,vegetables,ham,salad,bread,potatoes,fruit,eggs,hamburgers there is alot I can't eat such as anything spicy,mince meat, cheese,rice,Chinese or pizza's all the junk food basically which I hate as I used to eat alot of takeaways but I don't risk it anymore but I can eat chocolate yay thankfully,but I think it's a case of trial and error that's what I have found,hope this helps x

    • Miss_uc2015
      Miss_uc2015 cjb106

      Posted

      We could spend all day everyday reading I think.

      Thanks for your help. I'm in Australia but we have a similar group. I might try calling them. It's so hopefully folding go others. Sometimes the specialist isn't that helpful.

    • cjb106
      cjb106 Miss_uc2015

      Posted

      I think the predictive text gremlins may have been at work in that penultimate sentence. smile As this is all very new to me and as the diagnosis was a bit of a shock, it's a steep learning curve. Hearing about other people's experiences is hugely helpful. Yet to discover how helpful my specialist turns out to be. When I went to the pharmacist for advice today, he said I was the third person in that morning asking for help with UC. And that's just a tiny tucked away shop. I had no idea this condtion was so prevalent and that people respond so differently to different treatments. Wondering why that it. So much to learn.
  • rob96807
    rob96807 Miss_uc2015

    Posted

    I have had pretty much the same experience and went through all the drugs.  I took humeria, infliximab, etc and they all worked initially for about 6 months and then lost their effectiveness.  I have not been on entyvio for a year and it is supposed to pose way less side effects than any of the other high power meds and has worked for me better than I could have ever imagined.

    • Miss_uc2015
      Miss_uc2015 rob96807

      Posted

      Hi Rob

      thanks for your reply I need to ask the doctor about Entyvio. 

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