Hoping for a cure…

What a great website! I’ve really enjoyed reading everyone’s different experience with UC and feel so much better in doing so. I seems like it’s a disease so hard to understand, predict or control. The vagueness’ of the medical profession does not help either, they’re still not sure if it is an autoimmune disease, or an immune response to bacteria. So basically the symptoms are treated but not the cause, but there seems to be too much guess work and experimentation in treatment rather than a proper plan of action to properly and safely manage or cure this disease.

I was diagnosed with ulcerative colitis Jan 2010 after a 7 day hospital stay for severe symptoms. I was treated with prednisone initially to settle my flare up and have been on mesalazine 500mg x 6 tablets a day. I take my medication religiously and found that it DID NOT keep my colitis in remission, I have flare-ups continually that range from mild to moderate. I currently have a moderate to severe flare-up and I’m going to see my GI in 2 weeks yet again for some feedback. I have taken to the internet to inform myself on the disease, as others have done, because my doctor did not advise me or guide me as to what I should and shouldn’t eat. Generally I find spicy food (I love chilli but have had to avoid it :( , caffeine, and any overindulgence all trigger a flare up or make it worse.

I read that there is bacteria called Fusobacterium Varium present in the large intestine that may contribute to or be the cause of a flare up and UC, it seems a high percentage of UC’ers have a high count of F.Varium when the disease in an active flare up state. Also mentioned was some patients having success with an antibiotic combination of amoxycillin 1000mg tabs, vibromycin (doxycycline) 100mg tabs,
metroniazadole 200mg tablets, another thing I’ll be asking my GI about.

I’ve aslo read that probiotics VSL#3, primal defence, Mutaflor have given some relief from symptoms, also slippery elm and Boswellia Serrata, I think it’s worth some reading on the above and asking your doctor as I will be doing. At this point I would try anything that would settle my symptoms and provide some relief.

-Lauren




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5 Responses to Hoping for a cure…

  1. Charis January 9, 2011 at 10:36 pm #

    Hey Lauren welcome to the site! It sucks that you’re in this transition period of trying to determine what’s going on and how to best treat it. I find that when my tummy starts to get yucky, which is almost every day (blah), the probiotic florastor combined with lomotil and sulfasalazine help calm things down. I’m also starting to consider beginning the SCD diet.

  2. Kim January 10, 2011 at 8:22 pm #

    Hi Lauren, hang in there, sometimes you to be patient in order to start feeling better. I myself was diagnosed last december and have been trying different diets and medication..sometimes falling back into a flare…but now it has been just about a year and I finally have found medication (Imuran) that seems to be working.so be patient and try to hang in there there will be a time when you do feel better!

  3. Danielle January 11, 2011 at 1:20 am #

    Hi lauren! Im the same this website has helped me so much! And i have ordered the book called breaking the vicous cycle which im hopeing will help me too! Ive had mine 5 years this year disgnosed at just 16! I had no advise on what to eat or anything. I am only just since ive been with this website discovering what foods to avoid! Im just getting back to being ok after a flareup at christmas ive done this by having to double my dose of asacol so now im taking 6 800mg aday! But i think my diet has helped big time too!! Im doing a food diary until my book arrives to help me pin point any certain ingredient that my tummy doesnt agree with! Then im goin to give the scd diet ago! Maybe you should try the food diary? Hope this helps hun x

    • Lauren January 13, 2011 at 4:01 am #

      Hi Charis, Kim and Danielle,

      Thank you kindly for the warm welcome and words of encouragement. I’m glad to hear that you’ve all found a combination of medicine and diet that’s helped ease your symptoms. I’m hoping to get my combo right soon and have a normal toilet day, I’ve forgotten what that was like :s I too stared keeping a food diary to be able to track things better when my symptoms worsen.

      I’ve just started using Pentasa enemas and I received the VSL#3 probiotic today which I’ll start using. On bad days it’s hard to be in the office when having to go to the toilet so often, and hoping that there’s no one else in the toilet when I’m in a lot of pain. I try deep breathing to ease the intense cramping which helps a little. I get so tired and completely drained of energy after numerous toilet sessions on a bad day, all I want to do is sleep. I lose my ability to concentrate and focus on work because of the pain.

      Here’s hoping that one day we’ll visit our GI’s and they’ll tell us that they’ve found a cure for colitis. A cure that doesn’t require surgery, more like a pill that simply makes UC and its many associated problems all go away.

      Lauren x

  4. paul August 26, 2015 at 1:51 pm #

    I’ve had colitis for over one year, I didn’t go the doctors for 3 mths until I was farting blood, bad times it was, well anyway the meds I’m on sort of work most of the time, infacted I try to keep myself healthy thru work, I’m a career and a landscape gardener and have put on 2 stone and never looked better, never let the disease rule you!! Ps things I cant do is drink my lovely beer otherwise on the toilet the next day all day, worse thing is only got colitis at the age of 39 from giving up smoking!! I still smoke 10 aday keeps the shits away ha!!

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