How do I wean off of Azathioprine and change to Probiotics ie Optibac?

  • posted by PhillG
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    In July 16 I had the dubious pleasure of having an endoscope inserted through my anus having first cleared my bowel with Moviprep. The reason for this was that as a result of the Bowel Screening Programme, faint blood traces were found. The endoscope was passed all the way round to my appendix, with the only problem showing to be moderately active colitis. ??SCAD ?IBD. Since then my GP/ NHS Endoscopy Dept have tried all sorts of drugs non of which have worked. Don’t get me wrong my GP is very good but he admits he is a scientist that only trusts scientific controls tests of manufactured drugs. He admits that things like Homeopathic may work but he cannot condone them. I went to a Homeopath and they may recommended Optibac Probiotics.
    My question is how do I stop taking Azathioprine, which I’ve been on for 4mths now and in my opinion, doesn’t seemed to have kicked in yet, in favour of Optibac and a proper gut friendly diet?
    Thanks in anticipation of some alternative advise.

  • posted by GrahamSPhillips
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    What are your current symptoms? What dose of azathioprine are you taking? If the azathioprine isn’t working are they planning to add mesalazine? Have they prescribed steroids? These are all the standard treatments and they you are likely on to MonoClonal Antibodies. NOW: have you had your microbiome tested/analysed? Without that you are flying blind. That would be my recommneded next step. Then we look into your medical history, lifestlye (do you sleep well? Do you get 8 hours of quality sleep?) and diet. Maybe if you have dysbiosis this can likely be addressed by diet. Then if symptoms resolve you can have another endoscopy. If the gut looks ok you should be able to gradually withdraw from your drugs slowly and cautiously. Under NO circumstances would I suggest an immediate change from the drugs to the probiotic. And I’d suggest attack your diet and lifestyle by preference. Pro-biotics alone will not help. If you do want to try pre/probiotics I’d recommend Symprove. Take a look at the website. It has clinically, scientifically proven efficacy. Very few pre/pro biotics have undergone proper scientific study. Hope that helps. Graham

  • posted by Firefox7275
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    PhillG: are you in contact with the hospital pharmacist attached to the Gastroenterology ward/ department, and with the Dietetics department? These specialists are more qualified and knowledgeable *in their respective fields* than your family doctor. They could liaise with your Gastro consultant, and with each other.

    If your NHS team want science, bring it to the best of your ability. The Clever Guts Diet is written for the layman, but is authored by a GP and references published studies. Better still, Prof. Tim Spector and Prof. Rob Knight (American Gut Project, and authorities in the field) have both published books on the gut microbiome.

    The British Gut Project, and offshoot Map My Gut, are attached to UK university research laboratories. You absolutely should be able to discuss your results with any relevant NHS professional.

  • posted by Firefox7275
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    PhillG: have you been completing and analysing a detailed food and symptom diary (p.187)? With proper weighed and measured amounts this is invaluable for any lifestyle health professional.

    How does your intake of the various food groups/ types fit with official healthy eating guidelines for UK adults, any targeted NHS advice for your medical issues, the basics of the Clever Guts diet? By food groups or types I mean those containing added sugars or refined carbohydrates, oily fish, other healthy fats, fruit and vegetables (esp. prebotic rich ones) and so on.

    Similarly consider your overall lifestyle against official guidelines: physical activity levels, stress management, sleep patterns and quality, alcohol intake, smoking, weight management, sun exposure mid spring to mid autumn (for vit D). Not even health professionals get all this right … Especially not them/ us!

  • posted by PhillG
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    Hi Graham. Perhaps I need to expand. After endoscopy results my local hospital had problems with consultants (Passing over, long term sick and leaving so down by 3) which meant that I had no “expert” help. Meanwhile my GP put me on mesalazine Salofalk 1.5 then 3g. It calmed down, although plenty of BMW (blood, mucus and wind). It meant life was dependant on being near WC. By Dec I finally saw consultant and he was adamant it was SCAD and therefore Salofalk was a placebo and does not work with SCAD. He put me on steroids, but they had no effect, so back to Salofalk, but by early August had a relapse then put on Azathioprine 50g 3 times a day. Read it can take 3 -6 mths to kick in. 4 mths later I’m here and Aza doesn’t work either. Forgot to add that mid Aug had an appointment with a consultant at Guys & St Thomas’ in London in the hope that I might be able to get a FMT (faecal transplant). Unfortunately they do not have funding for anything other than C diff cases.
    Today, 3 days in, I’m taking Optibac once a day and stopped taking Azathioprine. Already my bowel is calming down.
    I have always had a reasonable diet and always been in good health. Retired from a life time as Plumber/Heating engineer, 2.5 years. Not smoked for 20yrs. Sleep well (8 hours) even though I get up 4 times a night to pass wind I always go straight back to sleep.
    Regards

    PhillG

  • posted by PhillG
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    Hi Firefox
    Having read and own The Diet Myth by Tim, its what got me on to a diet change and also FMT. Excellent read, couldn’t put it down. Oddly enough recommended by my GP who’s wife (also GP) had read it. Have never been given the opportunity to deal with hospital pharmacist, do they have these in UK?
    I’m trying to get back to a normal life that was washed out by Moviprep and of course eat fruit and veg (including Broccoli, which I hate) every day, at least an apple and an orange. Have maybe 3-4 units of alcohol a week. Eat fish at least 3 times a week and chicken fairly often. Rarely beef (it makes a mess of the oven). Lost 22lbs over 12mths. Take vit D3 everyday from Sep to April.
    I have noticed that Spicy Lentil soup aggravates bowel so stopped. Even tried wheat and milk intolerance, neither helped. What now?

    Regards
    Phill

  • posted by Firefox7275
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    GrahamPhillips is a UK community pharmacist, also linked to Map My Gut. Very knowledgeable and helpful. Highly recommend following his advice to the letter. 🙂

    My background is also UK healthcare: in and out of the NHS. My passion is lifestyle healthcare (nutrition/ physical activity/ smoking cessation) BUT not practised or studied in a few years due to my own health issues!

    So please excuse seemingly pedantic or repetitive suggestions, posting at unearthly hours, disjointed or half finished posts. Clashing combo of prescription and over the counter meds, no sleep!

  • posted by Firefox7275
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    Outpatient hospital pharmacy is much changed since I trained, but I believe inpatient is much the same. There should be a hospital clinical pharmacist attached to each ward/ department. They attend the daily ward rounds with the consultant and junior doctors. Check, advise and change drug regimens on ward.

    Contact with out patients varies with ward/ department, probably by NHS Trust, and the individual pharmacists interest/ time/ mutual respect with the consultants!

  • posted by Firefox7275
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    You might get fobbed off or stonewalled by the relevant clinical pharmacist, general advice on local formulary (which drugs are first second third choice by efficacy, side effects and cost), info on weaning off/ withdrawing, ability to influence prescribers esp. junior docs, someone with a special interest like GrahamPhillips … Lady luck plus persuasiveness needed.

    Your family doctor can refer you to a hospital dietician. Likely the Gastroenterology department can cross refer, that *might* be faster or need chasing to get done. You seem willing to put the effort in, the NHS has the expertise if you can access it.

  • posted by Firefox7275
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    Will post properly on diet later or tomorrow, but your detailed diet and symptom diary is key. Every mouthful and sip as you have it not later: research shows we forget, under or overestimate.

    Weigh and measure EVERYTHING. Kitchen scales, proper measuring cups and/ or measuring spoons (level). Ingredients lists to hand: digital photos help you analyse later if you have the technology. Yes you can guesstimate if you are eating half a weighed pack. Yes you can convert weight to volume if you measure properly every so often.

  • posted by Firefox7275
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    Why be so pedantic in your diary? Because UK recommended serving sizes are weights and volumes. For example fresh fruit and vegetables 80g. Compare salad leaves or fresh spinach to a dense fruit or veg. Massive overflowing soup plate or just half an apple.

    And because you need to know which ingredient(s) in your lentil soup are the problem, and how much you can tolerate of each. Hopefully more as your gut repairs!

  • posted by GrahamSPhillips
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    SCAD would appear as a rare autonomous clinical entity distinctive of old age, although it is still not well defined. It is likely that prevalence of SCAD could have been underestimated in the past since its main clinical presentation (namely bleeding without pain) is often found in elderly patients with diverticula. Endoscopy and histology could be helpful to discriminate it from infectious diverticulitis. Increasing evidence encourages the concept that SCAD includes pathogenetic and therapeutic aspects peculiar of IBD. This could be relevant for clinical management of SCAD. Indeed, the resolution of a severe, refractory case of SCAD has been recently reported with biological drugs used for IBD therapy. This observation could encourage, in the near future, the use of biological therapy in severe forms of SCAD as an alternative to surgery.

  • posted by GrahamSPhillips
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    Hi PhillG you havent provided sufficient detail for me to advise further, As suggested a detailed food diary and medical history would be key. I see no reason (based on the limited information you’ve provided) not to follow the excellent advice in Clever Guts. But again, beware of stopping the meds until you are certain your bowel is not inflamed. Regarding Fecal Matter Transfer google Prof Ailsa Hart at St Marks (Northwick Park) hospital.

  • posted by Firefox7275
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    PhillG: Once you have at least weeks of your detailed food and symptom diary, research and analyse
    “How does your intake of the various food groups/ types fit with official healthy eating guidelines for UK adults, any targeted NHS advice for your medical issues, the basics of the Clever Guts diet?”
    Consider serving sizes, maximum/ minimum number of servings, balance, daily/ weekly variety for ALL food groups/ types.

  • posted by Firefox7275
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    “of course eat fruit and veg (including Broccoli, which I hate) every day, at least an apple and an orange.”

    UK guidelines are *at least* five 80g servings a day, in the full rainbow of bright and dark colours. Several countries recommend seven to nine portions a day, in line with published research.

    Clever Guts guidelines are *at least* seven servings a day, mainly vegetables, 20 to 30 different varieties a week (p.191).

    “Eat fish at least 3 times a week.”
    UK guidelines are up to four servings a week, ideally oily – eg. mackerel/ sardines/ trout/ salmon – but minimising large species due to heavy metal accumulation (eg. tuna/ swordfish).

  • posted by Firefox7275
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    “Eat … chicken fairly often. Rarely beef (it makes a mess of the oven)”

    UK maximum serving size for meat is the size and thickness of your palm (~150g for adult male). Chicken breast is shockingly low in vitamins and minerals; eat a wider variety for nutrients (esp. organ meats/ game meats).

    “Have maybe 3-4 units of alcohol a week. Lost 22lbs over 12mths. Take vit D3 everyday from Sep to April.”

    Great! Also look at dairy and eggs, wholegrains, foods containing added sugar or fat, beans and lentils, nuts and seeds.

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