1. Community
  2. Gut, bowel and stomach
  3. Crohn's Disease

Do the NHS recognise SIBO?

Posted , 5 users are following.

UKMattG
UKMattG

Hi,

Has anyone on here had experience of the nhs testing for and/or treating SIBO?

I was diagnosed with Crohns in the terminal ileum around a year a go. Inflammation was under control having used budesonide for a bit and then Pentasa for 7-8 months.

I've still struggled with overall health, fatigue, intestinal cramps/pain/big headaches.

Recently I've been seeing a nutrionist and had a GI-MAP test which looks for pathogens, parasites, bacterial make-up, inflammation etc.

My calprotectin levels are back up to almost my initial untreated levels sad so that's one thing to talk to Gastroenterologist about.

Secondly, the results are also pointing to a likely case of SIBO, however there's a separate test to show for sure. I'm seeing my Gastroenterologist in a few weeks and I'm concerned he won't recognise SIBO as something real, not Willie diagnosis the short term medication shown to address it.

All experiences and thoughts would really help fore arm me! smile

Thanks

Matt

0 likes, 11 replies

11 Replies

  • Alfielefoo
    Alfielefoo UKMattG

    Posted

    I think 'sibo' is a grey area in the uk in general. The hydrogen breath test is not specific.

    They dont like to treat you with antibiotics as you already know i expect, due to resistance in the community.

    Pentasa is the weakest med, i imagine gi will discuss azathioprine with you.

    Your symptoms sound more like active disease.

    Good luck

    • UKMattG
      UKMattG Alfielefoo

      Posted

      I suspected as much. The GI-MAP test I used has been around years but NHS only just starting to use in primary care. SIBO is a step too far I'd guess.

      The thing is, when my calprotectin was definitely low or 'managed' I was still very sensitive to what I ate and drank despite being diagnosed with mild Crohns. Perhaps there is something more there with SIBO but gotta sweat the big stuff first. Active inflammation sounds like the bulk of my problem, or maybe all of it as you say. Got an appointment with consultant in a couple of weeks.

      Thanks for the reply. V much appreciated. Reaffirmed my suspicions.

      Matt

    • Alfielefoo
      Alfielefoo UKMattG

      Posted

      I find straight answers from gi hard to get!

      Hope visit goes well and you feel better.

  • leeniepie
    leeniepie UKMattG

    Posted

    I don't think sibo is recognised by the nhs. I asked a dietician about it once and got blank looks. Another one did know about it but agreed that Drs don't recognise it as a condition yet.

    I have found that reducing sugar in my diet has helped as bacteria feed off sugar. If I have a few days or eating sugary foods my symptoms of gas and bloating get worse

    • UKMattG
      UKMattG leeniepie

      Posted

      My dietitian hadn't heard of the SCD! Not too surprised. That's another vote in the "it's highly unlikely the nhs recognise SIBO" camp. I'm currently off all sugar and carbs to avoid sugary starch feeding it. Thanks for sharing your experience!

  • Dorwyn
    Dorwyn UKMattG

    Posted

    Hi, I have SIBO and this is recognised by the NHS, but you may find it difficult to get it diagnosed. There are tests you can take if you can persuade your doctor to refer you. There was an article in the Daily Mail about it a few years ago, do a search there. My treatment is antibiotics on a fairly regularly basis. At present that seems to be the only treatment, but of course you have to be sure it is SIBO.

    • UKMattG
      UKMattG Dorwyn

      Posted

      Hi Dorwyn, that's really helpful to know. I've had a SIBO breath test completed privately and my Gastroenterologist has said "we can come back to that" once I've been through another round of endoscopy, colonoscopy and MRI following some weight loss.

      For you, what symptoms went away when you were treated for SIBO and how large was the difference? Thanks. Matt.

    • Dorwyn
      Dorwyn UKMattG

      Posted

      Acutally, I was prescribed antibiotics for a skin infection. The improvement to my other SIBO symptoms was so obvious, and immediate, that the doctor and gi had to accept that it is SIBO. I was lucky.
  • Dorwyn
    Dorwyn UKMattG

    Posted

    Huge. Almost immediately, within a few hours, certainly a day or two, motions were solid and comfortable, not loose and sudden. I could sleep the best part of the night, without discomfort. And wind was much more controlled.I felt human again, not a slave to my bowels. I have been able to go up to 10 months at best without antibiotics, and as little as 4 or 5 weeks at worst. At the moment, there seems to be a reaction to excessive use of antibioitics, such that doctors are reluctant to prescribe. But cerainly in my case, it has been a revalation. I managed to get Rifaxamin prescribed by my gastroenterologist, which worked the longest.
    • UKMattG
      UKMattG Dorwyn

      Posted

      Thanks so much. This gives me some hope as I'm starting to think it's not the Crohns that continues to cause my problems. If you're not already on it - I'd recommend using diet to minimise SIBO. There's a variation of SCD which also excludes SIBO feeding food. I went through what they called die-off symptoms as the bacteria is starved but it's just a start. On conjunction with antibiotics that should really help.

Back to top

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.