Please, can anyone give me any ideas how I can re-set my digestive system - I am so miserable.

[Roselilysnowdrop]

Sorry this is so long but I wanted to list everything and not miss anything out in the hope someone may be able to advise or help me in any way(I am really getting desperate).

I feel the NHS have given up on me yet I feel worse now than ever before and I don't know what else I can do to help myself and wonder if anyone has been in this position and have managed to some how 're-set' their unruly digestive system?

I first developed gut issues almost 30 years ago. I was 25 and going through a stressful time. Out of the blue one day I soiled myself at work, no warning signs, nothing. I was mortified, this had never happened to me before. From that day in 1998 my digestive system has never been the same. GP simply said it was IBS and that was that.

The first 6 years were awful, I tried everything I could and spent a small fortune on alternative things but little helped. Then I fell pregnant and was symptom free for a full year, I was even able to consume dairy which is something I really struggle with. I do believe hormones and stress play a very large part in my gut issues history.

My 30's were up and down with some really bad and some really good days. I found that stress and certain foods were big triggers. In my late 30's a dietitian introduced me to the low fodmap diet which helped, somewhat. During this time I could enjoy a lot of foods.

However, when I got to the age of 45 it all went crazy. Admittedly, a lot of stress hit at this time - 5 years of daily school refusal from my ds (he's a lot better now hes an adult), MIL terminally ill, my own dm was diagnosed with Alzheimer's and my own perimenopause journey began (hormones and I do not mix well). Over these last 7 years my digestive issues have gone into overdrive and each year things are getting worse, there are only around 3 days a month where I actually feel 'normal' within my digestive system (those days are bliss but I keep a food and symptom dairy and have no idea what causes the issues).

I struggle with the following symptoms:-

Need to use the loo as soon as I wake in the morning and am often woken around 4am with gurgling guts - often need the loo several times in the AM and up until 12-1pm my guts are very unsettled

TMI (I promise I am not a poo troll) stool often has a consistency of peanut butter/wet mud - weirdly hard to push out even though it's super soft and requires LOTS of wiping. I sometimes can have 'normal' stool or even hard/constipated type it can swop and change yet I never change my diet that much so no idea why this occurs

Nausea and a gnawing acidic pain/discomfort (nausea often mid cycle and for 10 days or so)

Reflux and burping

An irritating cough to clear phlegm at the back of my throat

Post-nasal drip after eating

I often have a sore tongue

Tinnitus and a full feeling in ear (this has all been checked with an MRI)

I FEEL THE ABOVE 6 THINGS ARE ALL CONNECTED

Bloating (stomach bloats between 3-6pm regardless of when or what I have eaten)

Farting excessively some evenings yet other times nothing (can not see from food dairy why this occurs)

Excessive gurgling

This year in particular my gastro-colic reflex has become super activated and I often need or feel like I need to use the loo after eating - this makes eating out a nightmare

Pains in stomach after eating (sometimes/sometimes not yet no idea why)

In general an overall feeling of malaise within the whole of my digestive system which never feels settled or calm.

Over the last 6 years I have been back and forth to see my gastroenertologist and have had various tests,

2019 - Colonoscopy along with a gastroscope - gastroscope included biopsies for Coeliac disease, H Pylori, ulcers etc.
2023 - Another Colonoscopy this time with biopsies for microscopic colitis
2023 - A pill camera endoscopy to check my small intestine
2023 - Bile Acid Malabsorption scan - negative
2022 -Stool test for SIBO which came back positive for hydrogen SIBO however, my gastroenterologist (and 2 dietitians) are not convinced of this as they say the tests are unreliable however, I tried Rifaximin anyhow but it has not helped, in fact I feel worse

Private (and very expensive) stool test in 2022 came back with gut dysbiosis - don't think I needed to spend £450 to be told that tbh!

I have tried all of the recommended IBS medication and very few help long term. I have also tried various anti-depressants which made the loose stool and nausea worse and TCA's made me feel like a zombie.
PPI's give me a worsening of diarrhoea.
Imodium helps sometimes and I often feel great the day after taking it but more often than not it just slows down the super soft stool making it even harder to pass and eventually causing more issues (I only take half a tablet at a time). Mebeverine gives me blinding headaches. Buscopan does nothing. Colpermin helps somewhat so that is about the only med I take now.

My gastro tells me she no longer knows what to offer and puts 'Health Anxiety' at the top of all my follow up letters - I really do not have health anxiety, I am simply tired and worn down from having to put up with daily uncomfortable and embarrassing digestive issues, how can that not cause some degree of anxiety? Also I have never been diagnosed with health anxiety by any other health professional so it irks me she has come to this conclusion and seems satisfied with that diagnosis to my physical issues. Who the heck would put themselves through all of the above tests for the fun of it? - Tubes stuck down your throat and up your bum are far from fun.

I really don't know what I can do anymore to help myself, I have come to a dead end. I have spent a small fortune over the years trying to feel better, but to no avail.

Sorry to continue with the long list of things and hats off to you if you are still here but these are the things I have tried and am still trying.

Low fodmap diet - I have gone through this diet with several state registered dietitians over many years that I now know the diet well. I am still mainly low fodmap and eating the foods I know I am ok with and avoiding the ones I absolutely know are not great for me which include, dairy, certain fruits and veg, eggs & chicken (this has only been the last 4 years and runs in the family for some reason), coffee, sugar, high fat foods, fibre (all kinds of fibre give me diarrhoea), beef, beans and legumes, any artificial sweeteners (I only drink water). I have a love/hate relationship with wheat/gluten - I love bread, it's the food of the gods imo but I don't think my body likes it - I once went a full year without it but craved it every single day. I have tried eating just sourdough bread but I think it upsets me as well and I can not stand any GF breads, they are all horrible. This week I have added wheat/gluten to my list of no-go foods in the hope that I may see some improvement (although the thought of no bread is miserable).

I have tried various probiotics but they either do nothing or make me feel worse, the same with digestive enzymes. Aloe vera although my gastro told me not to consume this as it can turn the colon black!

I exercise every day, have spent a fortune on gut directed hypnotherapy both face to face and apps/downloads (currently back on it), I listen to the Calm app every night, I practise yoga, try to get to bed at a decent hour although my sleep is often disturbed now in peri (I can't take HRT) and I try to live as gentle and easy going life as possible which is hard as I help care for my elderly mum who is now in the advancing stages of her Alzheimer's that in itself is enough stress for a lifetime.

I have not worked for the last year due to my issues but I need to return to work. I need to earn money but I need to feel well in order to return to work, it's a horrible vicious cycle. I have booked an appointment with a local wellbeing clinic (recommended to me by a NHS GP) in the hope they will be able to help but I am nervous about spending money on this as I have wasted so much with various private specialists and alternative health practitioners and am still in this position but I no longer know what to do. It's a truly miserable way to live, ruled by your gut.

Anyhoo, if you have reached the end, thank you and if you are able to suggest something, anything that I may not have thought of I would be so grateful.

Not sure! Could be hormone regulation, could be anti-inflammatory: it slows down your guts and you eat less, so maybe that.

I barely even fart any more! 😄

As mentioned earlier I would cook from scratch & only eat meat/fish & vegetables cooked in olive oil with fresh herbs. Porridge made with water for breakfast. Possibly a bit of fruit & Greek yogurt. Nothing else & see if that helps. I would increase exercise too & try a fast paced walk for at least 45 mins each day. Drink only water. Nothing prepared in a factory whatsoever including sauces.

A professor of gastroenterology at a large teaching hospital told me that the only clinically proven probiotic was Symprove. You have to try it for at least 12 weeks and it is expensive, but I was at the stage where I would try anything, that combined with a strict low fodmap diet did sort out my colitis but it did take over 12 months.

I recognise a lot of what you're describing OP. I didn't go past the first lot of tests and cameras though.

I take 4 imodiim every other day and on the mornings I don't I use caffeine to get things moving. Then I find my guts are slower that day. Sometimes its hit or miss and I'll need more imodiim but it usually gets in a routine.

Taking 2 imodiim every night without fail can keep your guts in check as well. It's just finding how they work for you.

Yes it might feel uncomfortable having a clear out but at least it doesn't rule my life completely anymore.

Sometimes our bodies are just stroppy buggers and will work the way they want.

Oh OP I'm sorry you're on the receiving end of so many horrible symptoms and so little useful advice or treatment. My DH has also been through very similar for so called IBS over several years and it's been tough but here are the things that have made a difference.

1. Therapy and sertraline to break the stress/ anxiety cycle and give body a chance to heal
2. Fodmap diet (i know you said this didn't work for you so maybe not)
3. Digestive enzymes eg bean assist
4. York test allergy/ intolerance testing

The test is easy and done by a finger tip blood drop and postal test and the results were really interesting. At least two major foods came up which we had NO IDEA he was sensitive to (yes despite doing the elimination diets etc) and which are in almost every processed food plus lots of home recipes. It's hard to cut them completely (literally check every single packet of everything you buy) BUT it's made a real difference.

Finally, getting better while pregnant is a classic sign of autoimmune disease (your body naturally suppresses your immune system when you have a friendly "invader" growing inside) and I'm surprised no one has picked up on this. Have you seen an immunologist/ gastro for histology looking for inflammatory markers? Some of your symptoms for example could be associated with inflammatory oesophagitis which is fairly rare but also quite treatable.

Hope something here helps and you are able to see some improvements!
Good luck

I’ve had no negative side effects at all.
Acupuncture is expensive but the relief i get makes it worth it to sacrifice holidays or whatever just to afford treatments.

It did take a couple of tries to find a therapist who suited me.

As in all things you get good and not so good plumbers, good and not so good hairdressers, good and not so good acupuncturists.

Propranolol doesn't upset the stomach. It might give you a bit of a tight chest for a couple of weeks if you're on a higher dose but it settles.

It stops the physical effects of anxiety. No idea why you haven't been offered it.unless you're asthmatic or something.

So many people say their Crohns and colitis etc clear up on Mounjaro and similar drugs. I wonder if the manufacturers will issue a version of it for this treatment so people in normal BMI range can get the benefit of it.

Another recommendation for acupuncture. I’d do whatever it takes to afford a six week course, hopefully then you’ll be able to stretch out appointments and the benefits will ‘stick’. I’ve had brilliant results after a terrible back spasm, he also treated my nervous system and I feel like I went out of fight / flight and into rest / restore. Fight / flight destroys normal gut function and digestion when it becomes our constant state . A brilliant side effect is that my sleep has never been better, to the extent I’m putting off the hrt I was going to start soon as I don’t think I need it anymore (I’m 47).

You sound similar to me. Had constipation most of my life, then I got pregnant and had diarrhea and nausea ever since. It went away briefly once I gave birth but it comes back again intermittently. My gut is so active from the second I wake up until about lunch time. Also if I get nervous it sets it off again.
For me, I think it's hormonal with some anxiety too (a big link between the brain and gut). My symptoms follow my cycle so I think it's getting worse as I approach menopause.
Kefir and improving my gut microbiome has helped but could be a coincidence.

Do you have endometriosis? I’ve just been officially diagnosed after a laparoscopy where they found it on my bowel. I’ve had a colonoscopy a couple of years ago because of bowel problems but nothing was picked up so I’m now assuming my bowel and stomach issues are being caused by the endometriosis. I’m still in the early stages of diagnosis though so can’t be certain it’s the cause but it might be worth investigating, especially if you’re already having gynae issues.

I've had IBS pretty much all my life and have had pretty much all the tests and investigations you described at one time or another. Seen 2 different gastroenterologists, dietician, tried or been offered all the medication (I refused the antidepressants route because it wasn't for me), done the food diaries, low fodmap, etc, seen no results. Oh yes, and I'm sure healthy anxiety is emblazoned across all my health records. I've always believed that stress is the main causation. I admit to being a very stressy individual

This was me for sooo many years, and doctors just rolling their eyes at me and telling me to reduce stress. I and I believed them, and I did yoga, and changed jobs, and I rested and I gave up caffeine etc. and none of it made any fucking difference..

Then I saw a dietitian and was diagnosed with adult onset cows milk protein allergy. Now I don't have any milk products at all (milk completely excluded, not just lactose free) and my symptoms are 99% gone.

I was coming on to suggest Symprove which is a very specific pro biotic strain proven to help with IBS. I see it’s already been mentioned.

It may be your issues are more complex but has to be worth a try.

Also, have you ever had blood tests to check for general inflammation markers?

i really feel for you. Gut issues are awful and I’ve only been suffering for 3+ years. Also started after bad Covid and a stressful period.

Your reflux/post-nasal drip/tinnitus/phlegm all probably related. Look up LPR.

i have the farting thing too - usually later in day/after I’ve had a poo. A food diary hasn’t revealed much. I find it hard going out in case I’m having a farty day and holding it in is awful and it comes out anyway - sometimes w some mucous/liquid. The GI said ‘just let it out’ - in the middle of the theatre - no! Fibre seems to make it worse.

Have you had an abdo CT? My recent one showed my intestines are malrotated - probably congenital even though I’m in my 50s. I had major abdo surgery as a baby but idk if it’s related.

It’s out of order of your gastroenterologist to say you have health anxiety, anyone w bad digestive system is anxious by default!!

I've suffered for decades with period problems and always refused the mirena for fear it would make my migraines worse so I opted for a uterine ablation instead which has proven to be a big mistake for me as it failed and I now suffer from a lot of pain. I now can not have a mirena as the scarring means they can not get into my uterus. I really wish I had opted for the mirena instead, at least I could have had it removed if it had not agreed with me.

Psyllium husk. May make the gas worse at first as your body adapts but it’s a game changer.
Also daily breathing exercises to reset vagus nerve.
I know these sound bizarre but I was very similar to you and had tried everything.

I also should have said I really feel for you. It’s such a terrible impact on quality of life and is often just dismissed as IbS with advice to try the low fodmap diet which def didn’t work for me. www.reddit.com/r/ibs/s/IdiJjfQy0I

I have booked an initial consultation with a local wellbeing clinic, they have an in-house GP and several health specialists. I really can not afford it but if I feel they can genuinely help me I will stick it on my credit card, I need to feel better in order to get back to work.

I am really interested in acupuncture, it does seem to help a lot of people. Good to hear it helped your ds.

I do eat a low fibre it's not completely no fibre diet, I just have to be very careful with any form of added fibre and especially insoluble. I get mine from well cooked vegetables etc.

I don't know how I was weaned and as mum has advanced dementia she is unable to tell me. I wasn't breast-fed that I know so maybe that has had an impact on my gut microbiome although I had no issues as a child or during my teens and had few childhood illnesses.

Not to be a poo troll but has anyone tried a fecal transplant? I’ve read a couple of positive articles about their success but I don’t know how common they are.

Thank you, does the colorectal surgeon know what your issues could be down to? Endometriosis and adenomyosis was picked up on a MRI scan back in 2023. I am under my local endo specialist centre and awaiting a hysterectomy for the adenomyosis and my failed uterine ablation (basically mu uterus is buggered). I have asked my endo specialist if my gut issues are related but he says absolutely not, he believes, going by the MRI scan, that my endo is quite mild but I do often wonder but he is an endo specialist so I suppose I have to take his word for it?

Not sure it’s been mentioned but have you tried fasting?

Thank you, I will look for that app.

Did you find your gut issue worsened during perimenopause and ease after? I live in hope that menopause may ease things a little but perhaps I am being a little too optimistic?

So there was some inflammation found at the opening of my appendix during a colonoscopy so it could be chronic appendicitis. Endometriosis could absolutely be causing your problems! I've been in a bit of a research hole this year as it has taken so long to get someone to listen to me and take me seriously. I spent a lot of time researching endometriosis to see if this could be part of it for me - and there are so many accounts online of it impacting the bowel and sometimes the appendix. Everything in that area is so close together that it absolutely can impact your digestive system. Endometriosis is often missed on scans too, so it seems quite significant that they could see yours - a laparoscopy is the best was to see the extent of it. I really think they could be missing a trick here. Endo can spread and if yours was picked up in 2023 there is a possibility it could now be impacting the bowel.

I know some people will say to just trust what the medical professionals tell you - but I have had a few experiences which shows that sometimes you need a second option.

Thank you so much. No, no one has ever suggested anything autoimmune. I do believe I've had the standard inflammatory markers checked during my recent full blood panel. The only thing raised as abnormal were my IgA levels which were low.

I've never heard of bean assist, will look into that.

I've done the York test twice but both times it flagged up foods I already avoid.