Hi all. I've dipped into this site for years as/when my symptoms dictate. Seems I am in good company. I'm sorry this is so long but I'm unsure how else to seek help from this site...please bear with me.
I'm 42 have suffered ibs type symptoms on/off all of my adult life, have had scant success with doctors (who've happily prescribed anti spasmodics or colpermin but were otherwise pretty dismissive), have munched my way through charcoal, elimination diets, have swallowed untold supplements and have spent a fortune on otc and herbal remedies. So far so familiar.
I'd always suffered mostly from D, occasional C, but always the discomfort /frustration of incomplete evacuation, and always bloating and pain irrespective of what I ate/took. I found in 2012 that a low carb diet meant my stomach was at least a little less audible (it constantly growls and begs for food). Ive always been at the high end of my bmi and have difficulty losing weight, but in 2013 had a blood test for Crohns, celiac and thyroid as I lost a stone in 3 weeks undeliberately and had terrible constant D, wind, bloating. All tests came back negative. I then had huge improvement Sept 14 to June this year (surprising given I'd had the most stressful job of my life for 11 months of it). In June this year I was put on diazepam, codeine and naproxen for a back spasm. I expected the codeine C but was unprepared for the naproxen grinding up my insides. Immediately I suffered terrible C, bloating, water retention and inflamed insides. I stopped taking the naproxen after a week as I couldn't stand the swelling/pain and relied on lax's with the codeine. It was research at this point that led me to sibo.
I realised that for the 1st 8 months of my good period I'd been on daily Trimethoprim (for interstitial cystitis) and that this is used to treat sibo (and later found sibo is closely linked with bladder issues). Since July I've suffered mostly C (i stopped the codeine after 2 weeks) with intermittent D. I've put on weight, am always bloated with much discomfort. I saw a Dr late Sept who dismissed sibo but tested for h pylori (result was negative) and prescribed lansoprazole alongside probiotics (which have previously made bloating worse). The acid blockers meant I never got heartburn (though I didn't even mention an issue with that ) but the acid blockers caused terrible C, I had a new crampy/stitch pain above my navel and nausea. I took them for a month before stopping a week ago. My stomach is easing back to more normal, but only comparatively given how badly the Ppi affected me.
Various frustrating phone consultations resulted in another Dr suggesting a 2nd test for calprotectin. The lab then declined this test as they questioned the medical history (who are they to judge??) The Dr has now pursued this and referred me to a Gastro consultant. I await the appointment. It's all so frustrating and the reluctance to actually investigate makes me feel like a fraud.
Sorry this is so long and detailed. I don't feel that the improvement while on long term antibiotics is a coincidence, and neither is the problem following codeine. I've latched onto sibo as the clues fit and nothing else has been diagnosed. 3 times I've suggested a test for sibo. At best my record now states a Dr 'explained gut bacteria' to me (sigh), at worst I was told the nhs doesn't test 'as it's a very controversial diagnosis'. I await test results and appointment but am otherwise at my wit's end and the weight gain is not helping my mind set either. Can anyone shed any light on this please, or give me the benefit of their experience???
Here's hoping - many thanks!
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Lulu_75
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I have noticed stress can in some cases - as in working a lot keeps my mind off my gut issues that are very similar to yours. Also ages are within a year.
I recently has the SIBO breath test and it came out as right in the middle of the scale that is now possibly called mild sibo but then comparing that to stool testing that had some yeast in it makes us think the issue could be between the small and large intestine that might be fungal issues. The only real way to test that location is with a scope.
So we are going to try anti fungal etc - have you tried a course of rifaximin? If so did it help?
I have also tried about everything I have had these issues for over 20 years and I have thrown out more medication and "remedies" than I have taken and I have taken a ton of them.
Are you taking probiotics? If so which ones / types?
Hi,i'm in the same situation as you,I suspect I have sibo along with IBS and Diverticular disease,I was denide a sibo test also, Ive suffered for 24yrs and also spent a fortune on stuff that is useless ,ive researched sibo and I purchased a course of rifaxamin privately they cost £129 and didn't help,I am now taking high quality wild oregano capsules I read they are as good if not better than antibiotics there are some reviews for them on amazon .Like you I will give anything a try.
Use of acid blockers and pharmaceutical antibiotics can definitely lead to a gut flora imbalance, which can lead to a overgrowth of bad bacteria. Regrettably SIBO is not taken seriously by doctors in the UK.
SIBO can also be very difficult to diagnose, particularly if the overgrowth is located far into the small intestine.
I failed a hydrogen breath test but managed to convince my doctor to prescribe a two week course of Rifaximin, owing to my symptoms. I did feel a benefit for three days, but then regressed.
I then came across the work of Allison Siebecker and went down the natural antibiotics route, which some trials have shown to be more effective than Rifaximin.
I used berberine, allicin, neem and oil of oregano for 30 days, and then commenced high strength probiotics to repopulate the good bacteria.
My daughter had the Hydrogen breath test under the NHS. It came back positive. We think it has come back as her symptoms returned after stopping the anti-biotics.
After taking that glucose drink and nearly passing out, we have been able to spot that it is sugar and potato (weird?) that make her feel worse so she avoids sugary drinks and chips / fries etc., As glucose is a really basic dietary substance and it is in Fruit etc., it is hard to avoid on even a healthy diet. I wonder if sugar makes your symptoms worse? Apparently the gut bacteria feed off it and that is what makes the hydrogen in the breath.
It is not that controversial apart from with a few backward thinking doctors so keep asking for it, there is an independent company that does tests for a fee.
Hi all. Many thanks for your replies! To answer your questions, I'm taking high strength shop bought multi strain probiotics on the dr's suggestion. I've tried many types of probiotic over the years in the hope of rebalancing my gut to no avail. The Dr who prescribed the acid blockers assured me I'd not get worse bloating if I took them with the ppi's but was wrong. Current capsules are with prebiotic.
Yes my problem is worse after ingesting a lot of sugar. I don't have a hugely sweet tooth and avoid high starch carbs (pasta, spuds, bread). I rarely eat fruit either. However I do have a mainly v healthy diet of high protein, lots of veg/salad, small amounts of cereal fibre. I'm 5'6" and 11st so at the high end of my healthy bmi but not obese. I do like a drink (usually 3 times a week) but as I've abstained variously from wheat, gluten, booze on previous occasions to no avail, I didn't feel a reason to deny myself some wine or vodka if I fancy (as avoidance made nix all difference before!) Actually drinking eases the tight bloating pain (tho that could be the anaesthetic effect??)
I've not been prescribed anything other than peppermint, ppi's, fibogel and antispasmodics. Most dr's have made dietary suggestions - a little like preaching to the converted.
I'm interested in the herbal antibiotics but prefer to see a gi specialist 1st in case I disrupt any imbalance yet that I want them to find. I am however seriously considering going down the private route but figure this will be costly.
Hi I understand how you ar! I spent 4. Years and thousands of dollars trying to find out what was happening, finally moved countries and diagnosed in 24 hours Dysbiosis , it is a form of bacteria that feeds off carbs, so that's why you felt a little bit better off carbs. I am on a very strong antibiotic designed for the gut only, then you go on 500 billion strength probiotic. I gained sooo much weight with it and looked nine months pregnant with twins. Would wake up reasonably flat and as soon as I ate or drank it blew up unbelieveably, felt very ill for 4 years. Please speak to you r specialist about this condition. 👍
Thanks again everyone! I knew I was not alone but it's so good to hear everyone's support and feedback.
The weight thing is very frustrating. I've hovered around 11stone all my adult life. Whilst I eat pretty well I've never been able to shift a huge amount of weight, until 2013 when the weight just started to drop off. I lost well over a stone in a few weeks and initially felt great (afterall I was used to the explosive stomach issues anyway so weight loss was a happy bi-product!)...until people started telling me I was looking unwell. The weight stayed off for about a year and started to very slowly creep back up... until May/June's issues and now I'm back to where I was. Like Denvajade I used to wake up with a flat stomach which would grow over the day. Since June it is very rarely flat and yes I do look pregnant. At its worst my boyfriend joked we should send a photo out to family to see what reaction we got (I was wearing loose tunics and maternity tights to work by that point)! He is however typically very supportive of my problem - though it helps to keep a sense of humour about it (hence he often holds full-blown conversations with my very vocal gut, or sings along with the "whale song"!)
I'm gathering notes from all your replies for whenever my NHS appointment comes through. I'll keep you posted but please keep the information coming!
Worth pursuing or at least considering the SIBO approach based on my experience, scientifically supported or not (many doctors admit they don't know/understand everything when it comes to digestion/brain fog etc.) Like you, after many years of cramping, bloating, acidity and upsets and reaching a state of near desperation and hopelessness, I've been going to a nutritionist (non NHS) for over a year now. After initially putting myself on a self-imposed gluten free diet and having partial success, she then put me on a SIBO diet with various supplements (not cheap). I've lost over 1 1/2 stones (I didn't "have to" but I'm not at all unhappy I have), and the effect of the diet has been more than significant and sustained, not 100% perfect, but vastly improved. I occasionally have less good periods for a few days but even then nothing like it was previously. It's not an easy diet to follow, very restrictive and challenging, but I've stuck with it and, after many false dawns on earlier attempts down the years with other "solutions", I can confidently say that the SIBO diet has had a very significant beneficial effect on me. I haven't been on antibiotics as yet, that may happen down the line and is under discussion. So it may be worth finding yourself a reputable nutritionist, one who really knows what they are talking about - my own is a qualified doctor who is now pursuing a more holistic, broad-minded approach to treatments. Good luck
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