The microbiome and ileostomy

  • posted by Eglantyne
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    Hello. I have just finished reading “The Clever Guts Diet”. I have found it very interesting and informative. However I am now wondering what is the effect of an ileostomy on the microbiome. An ileostomy means the complete removal of the colon. Can the microbiome then colonise the small intestine instead of the colon?

  • posted by GrahamSPhillips
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    What information did your gastroenterologist and surgeon give you? what is your diet and lifestyle? What was the reason for the ileostomy and are you fine now? Are you taking lots of medication? All these things will have an effect. Of course you could always have your micro biome analysed which is the only way to provide an definitive answer to your question

  • posted by m.chung
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    My daughter had an ileostomy due to Ulcerative Colitis and not having her appendix I would like to know what she needs to eat to boosts her good bacteria.
    Her gastroenterologist always told her that the Ulcerative Colitis was autoimmune and the surgeon did not give any advice, the only advice was from a stoma nurse who told her that she could eat any crap foods as long as the stoma was producing. This I did not find helpful.

  • posted by Firefox7275
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    She might request referral to a registered dietician.

  • posted by GrahamSPhillips
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    I ‘m assuming the colon has been replaced with a pouch rather than a stoma? That being the case I see no reason not to follow the CleverGuts diet but make any changes VERY slowly and one at a time.

  • posted by m.chung
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    She was seen by a NHS dietician but we did not find the advice very helpful. She has had her stoma for two years now but her rectal stump is still inflamed so there is no way that she can have a j pouch at the moment.

  • posted by Firefox7275
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    Would your daughter be able to come online and supply more information about the dietician’s recommendations? Which food groups or types to increase/ reduce/ avoid; which aspects of the dietician’s advice were unhelpful?

    Although some of us have healthcare qualifications or personal experience, I am conscious that we do not ‘trump’ a registered dietician with access to the medical notes.

    Has your daughter been completing and analysing a detailed food and symptom diary?

  • posted by GrahamSPhillips
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    It could well be worth trying Symprove or VSL3 pro-biotics

  • posted by Joe90
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    I am very interested in this subject as I also have no colon and a j pouch ( which works very well) but I am almost permenantly bloated and uncomfortable, I do have chronic adhesions tho!. I was given no advise on eating apart from eat lots of chrisps as the colon absorbs salt in your diet!!!.

  • posted by m.chung
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    My daughter was also advised to eat a lot of crisp by the stoma nurse because of the salt content. The NHS Dietician’s advice was that she could eat any foods. My worry is that she catches a lot of colds and has one at the moment, this leaves her exhausted.
    I did take her to see a Nutritionist when her colitis was diagnosed and she did a food diary and was given a prescription for I think pro-biotics, however the colitis got worse.

  • posted by Firefox7275
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    M.Chung: be cautious with UK nutritionists, check they are properly qualified and registered. For many years the title was not protected, so even those with very low level qualifications (GCSEs!) could practice.

    In the UK deticians must be qualified to honours degree (often higher), then one years supervised experience, register with a professional body, then keep their knowledge up to date.

  • posted by Firefox7275
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    M.Chung: If a registered dietician has advised your daughter that there are no dietary restrictions, then your daughter can proceed *with great caution*. Anyone can have unpleasant symptoms if they change too much too fast.

    The starting point is the detailed food and symptom diary (p.187). Your daughter may find my comments on this in the ‘Azathioprine’ thread, ‘Probiotics’ forum helpful.

    Then, as GrahamPhillips says, make changes very slowly and one at a time.

  • posted by Firefox7275
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    Relatively salty foods that may fit with Clever Guts include traditional cheeses, sea fish and shellfish, seaweeds/ sea vegetables, some roasted nuts or seeds.

    I am NOT recommending any of these foods to anyone in particular: please follow medical advice and keep a food diary.

  • posted by Joe90
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    My nutritionalist did a blood test on me and produced an intolerance list of foods that was very long, however Dr Mosely in his latest book writes about his scepticism on these blood tests. I am looking for good reading material about health/diet without a colon.

  • posted by Firefox7275
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    Joe90: if possible get tailored advice from a medical professional (eg. registered dietician, gastroenterologist) who has full access to your medical notes and to your detailed food and symptom diary.

    To diagnose food intolerances or allergies the ‘gold standard’ is a medically supervised elimination diet. Clever Guts phase one is a safer and less brutal version of that.

    If searching online for information on diet after colectomy/ ileostomy, stick to websites that are evidence-based and not trying to sell anyrhing! So teaching hospitals, UK National Health Service, universities, registration bodies for medical professionals, charities for gut conditions.

  • posted by thedrivenline
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    I have had an ileostomy since 2006. There has been very little scientific research done on people who have no colon; the current wealth of positive information and growing body of knowledge about the biome is great news for people who still have somewhere to house all those millions of microbes in their biome, but not so encouraging for those of us whose biome has nowhere to go. Or does it? People without a colon cannot rely on medical advice about food because doctors and nutrionists do not know what is going on in their bodies. We have to proceed largely by trial and error and find out what works best for us in the hope that more research will be done. I lost my colon in two stages: the whole colon up to the rectum in 2006 and the final rectal stump was removed in 2012. Since then I have survived in reasonably good health despite (apparently) nowhere to house my biome. I feel medical science still has a long way to go to discover how the body manages a situation like this.

  • posted by GrahamSPhillips
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    Try googline- there’s actually quite a lot of research on microbiome and pouchitis for example..

  • posted by Deedukes
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    I have read this post with interest however it doesn’t answer my question (or the questions of others) as far as I can see. I am a healthy person and have had an ileostomy for 32 years (I had it young). Permanent removal of large intestine. I can eat whatever I like from a digestion point of view and have no nutritional concerns. BUT if the gut biome lives in the large intestine what does this mean for someone like me who has no intestine or j pouch or anything remotely approaching a large intestine. Do I have a gut biome, can it develop in the small intestine? Google has not helped! I tried that first which is how I got to this thread. While any of the advice re foods won’t do me any harm do I have a gut biome to improve?

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