Ulcerative Colitis Tips


One of the 15,000 ulcerative colitis folks using the site adds:
"Like many UCers I have spent many hours trawling the internet googling the condition and came across your website a few years ago. I read your ebook and really liked your honesty and humour. As everyone says your positivity is so encouraging and now this is my go to website when I'm thinking about UC. Thankfully my symptoms are pretty much under control at the moment but just wanted to say thanks." Kate

Do Worms Do The Job?

Sheela fullIntroduction:

Hi I’m a veteran UC sufferer based in Oxfordshire Uk – diagnosed in 1984 aged 18 after an acute attack which resulted in severe weight loss and anaemia.

Some more about me:

I am from Oxfordshire, Uk, & love amateur dramatics & singing. WorkIng as an After sales Co-ordinator for A Renewables Company.

Symptoms:

A Slow flare up with bleeding and Some pain v but over the years my body seems to have got used to waiting until work is over before I have to rush to the bathroom! Ive been taking Mesalazine & Azathioprine for past few yearsbut now Im going to add a couple of spoons extra virgin olive oil on a daily basis and see if that helps.

Do Worms Do the Job

Hi I’m 47 & live in the UK and was diagnosed with ulcerative colitis in 1984 which has flared on and off since. I have 5 lovely children aged between 17 – 27 including twins- the uc was fairly quiescent during most pregnancies although I had to have blood transfusion during 3rd, but a flare up usually followed 2-3 months after delivery.

I find my condition is massively affected by stress levels but since most people say I seem so calm – I assume any stress rushes straight to my colon! I don’t think there have been any great advances in the treatment of this disease – perhaps because bowel problems aren’t a popular ’cause’ when it comes to funding research?

Has anyone tried the ‘worms’ treatment – & with any success?

I have family in California as my dad is American but has lived here in the uk since the 1960’s. Treatment for UC in this country is pretty basic – just drugs, blood tests and occasional check ups when required. I don’t think there’s a proper screening program (colonoscopy) either although one doc mentioned these should be every 3 years – how often have other sufferers been invited for this examination?

written by Sheela

submitted in the colitis venting area




10 Responses to Do Worms Do The Job?

  1. Adam
    Adam May 5, 2013 at 6:08 pm #

    Hey Sheela,

    I myself don’t have any experience with worms (or helminth therapy as some might call it), but we did have a posting I wrote on the exact topic not too long ago. There was quite a bit of research being conducted and it for sure broke the news just a short while back. You might want to check this posting out:

    http://www.ihaveuc.com/how-could-helminth-infections-actually-help-inflammatory-bowel-disease/

    There are some links there as well to an expert who is one of those mad scientists who is doing quite a bit to help out and uncover what this type of treatment might mean for people with IBD.

    Best of luck to you, and I’m hoping you get some replies from people who have tried it.

    -Adam

    PS: also, you can do a search for “worms” or helminth therapy up in the top right hand side in the search bar on the site, and some other related stories will pop back at you.

    • Sheela
      Sheela May 17, 2013 at 7:26 am #

      Hi Adam – many thanks for this info, I am having a read through other responses too, it all looks interesting and helpful!

  2. Artie May 5, 2013 at 6:20 pm #

    hi,
    I have not tried it but my GI’s office is very active in clinical trials for UC and Crohns. I do know that there are 3 people at my GI’s office that are on it. All three of them had positive response but not sure if that means remission. If I fail my current remicade treatment I would consider worm therapy or stem transplant therapy both are which are enrolling patients. Hope this is useful.

    Artie

    • Sheela
      Sheela May 17, 2013 at 7:27 am #

      Hi Artie – thanks for reply; are you based in the UK? I would be interested in enrolling on a therapy programme if available but this has not been mentioned to me by my GI

  3. Sheila Gresehover May 5, 2013 at 9:24 pm #

    Hi,
    Just wanted to add there is a closed fb support group for those experiencing helminthic therapy. My Gi doc said “it works “. But he encouraged me to wait until more research is done. Just search in Facebook for helminthic therapy and I think you will find it and you can request to be added. There is a wealth of information and many positive success stories. It’s my next choice when the remicade stops working. Best wishes!

    Sheila

  4. bev May 6, 2013 at 3:42 pm #

    Worms…I’m dying to know about this too. I think it’s early days in this treatment yet, isn’t it?

  5. Erica May 6, 2013 at 4:39 pm #

    I recently had opportunity to enroll in the worm therapy but my
    Symptoms at the time weren’t bad enough so I didn’t go any further.
    It seems promising though and has worked for many. I’m in Houston tx
    And the study is now at Baylor. Fingers crossed we get these **safer** options.

  6. Ronnie May 11, 2013 at 9:51 am #

    I’ve been in contact with them in the UK, its a straightfoward thing where they send you doses in the mail:) One of the lab geniuses harvesting the worms has UC. They are quite helpful and will skype if you have any questions etc. It’s quite expensive and I was ready to try but I had CMV infection so the chances of it working wasn’t great. The Crohns patients get the worm which lasts the longest about 5 yrs and for UC patients its 3 max! When my infection clears and it seems to be I’ll be taking the plunge and let you guys know what happens..
    Remission dust to all xx

    • Sheela
      Sheela May 17, 2013 at 7:28 am #

      Hi Ronnie – thanks for this, can you please send me details of the UK lab?

  7. Sheela
    Sheela May 17, 2013 at 7:29 am #

    …. also Ronnie – thank you for the Remission Dust! x

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