Cerebral Palsy
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Crohn's probiotics and cost!!!!

meandmine30meandmine30 Member Posts: 21 Connected
edited March 2019 in Cerebral Palsy
My consultant said to me that I needed to take probiotics to help with the crippling pain I'm in sometimes. He said they can't prescribe it and gave the name of the cheapest his patients have told him about. 

Its like £25 a month! I'm like what the f?!!! That's so expensive. I can't afford that. This is rubbish. 

Does anyone else take probiotics for crohn's? 

Replies

  • Antonia_AlumniAntonia_Alumni Scope alumni Posts: 1,781 Pioneering
    Hi @meandmine30 welcome to the community. How are you doing today?
    Thank you for sharing this with us, I am sorry to hear this. Hopefully some of our members can answer your question on this.
  • Sam_AlumniSam_Alumni Scope alumni Posts: 7,729 Disability Gamechanger
    Hi @meandmine30
    The reason that probiotics arent available on prescription is due to limited evidence of clinical effectiveness. I know there is a lot of debate and studies being done on whether they are effective for IBD, I would ask your consultant what he thinks the benefits would be and if they work why they arent available.

    I have Ulcerative Colitis so I do try and keep up to date on matters around IBD but I would say to take a look at the Crohns and COlitis UK website for lots of information. It may also be useful for you to speak to an IBD specialist nurse?
    Scope
    Senior online community officer
  • meandmine30meandmine30 Member Posts: 21 Connected
    Sam_Scope said:
    Hi @meandmine30
    The reason that probiotics arent available on prescription is due to limited evidence of clinical effectiveness. I know there is a lot of debate and studies being done on whether they are effective for IBD, I would ask your consultant what he thinks the benefits would be and if they work why they arent available.

    I have Ulcerative Colitis so I do try and keep up to date on matters around IBD but I would say to take a look at the Crohns and COlitis UK website for lots of information. It may also be useful for you to speak to an IBD specialist nurse?
    Thanks, he seemed to think they were like the new up and coming thing to help people get their gut fully back in to shape when they're in remission. I said I thought the lingering pain was from damage the Crohn's has done to my bowel but he thought it was more likely that it was an imbalance in the bacteria and that if I have too much bad bacteria that then encourages more and I end up in pain from too much wind. 

    I haven't seen my specialist nurse for a good while unfortunately, I don't tend to want to go for something like this, I find they tend to brush it under the carpet and not want to address the pain I'm still getting if they're not seeing active crohns 
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