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.

Sending sympathy as I could have written your post. Mine started mid 20’s and has been going on for 15 years now. Honestly - I’ve just given up trying to fix it now. There are a whole host of foods I can’t eat as it makes things so much worse, dairy is a huge trigger along with anything oily or too rich. I go through better periods but (tmi) I’ve not had a solid stool even in a better period for over 10 years now.
Stomach pain (ether low level or severe) is also just a constant. So essentially no advice, just sympathy

I'm so sorry you are struggling too. It's no fun, is it? I know that I probably need to get to a level of acceptance but I keep with this thought process that I was fine before this all started back in 1998 so why can't I get back to a good place, especially when there is nothing actually physically wrong with me as all tests/scans etc come back as 'normal'. I feel anything but normal.

You poor thing. Its probably the stress making it worse. Have you had any therapy around dealing with your Mum? The brain gut connection is strong and it maybe more helpful that focusing on your gut. And maybe reduce the excerise a bit for a while and see if that helps? IBS requires us to get creative as there is no quick fix sadly.

Oh my goodness @Roselilysnowdrop , I really feel for you. That must be so miserable.

I have also had gut issues since my teens, but have not explored anywhere near as many tests and options.

Several things you have said ring bells for me. Perimenopause caused a worsening of my symptoms, as does family or work related stress.

I hate the diagnosis of IBS, because it is so meaningless and find the term ‘health related anxiety’ patronising. Who wouldn’t be anxious with all those symptoms. However, there is no doubt that for me my gut issues do increase at times of stress and I focus quite a lot of attention on keeping my stress levels as low as possible.

Currently things are quite settled for me following a decision two months ago to remove all Sugar, Dairy, Gluten, Meat and UPF’s from my diet. And I mean all, especially in relation to Sugar and UPF’s.

I have no idea why it is working, but it is. All I eat a.t.m is Vegetables, Fruit and Fish.

Obviously that is restrictive, but I am hoping I can reintroduce foods gradually to try and isolate what might be the cause of my problems.

In that respect a dietician did tell me several years ago that while a food diary is useful, you must look several days back to try and identify triggers. The reactions are not always immediate. She also told me that if you crave something, be very suspicious of that food.

Finally, with regard to bread . Have you tried the M&S Gluten Free Oaty loaf. It makes good toast and even passable sandwiches untoasted.

Don't suppose you are overweight? Mounjaro has totally cleared up all my gut issues.

I do think th caress is greatly exacerbating everything.

I have had lots of CBT in the past and have been lucky to have recently found a great counsellor in training at our local college, they are able to offer my sessions for free as I'm on carers allowance which I am thankful for. I'm currently 6 sessions in and have 2 left. My counsellor is great and it does help off load my mental anguish but sadly not helping much with the gut issues.

I don't do any excessive exercise, I walk my dog over fields once or twice a day and the yoga stretches every day. Too much high intensity exercise also upsets my gut 🙄

I know there is no quick fix but I was hoping after 27 years lol I may have found a routine that works for me by now. I forever live in hope though.

Sorry to hear this OP. It sounds very reminiscent of the issues I have with Crohn's Disease, but if it was that, the ulcers would probably have been seen on your various scans. I also find that hormones have a huge effect. I did wonder slightly about gallstones though, which can have gastric effects. Has anyone ever looked into this?

This is a 100% unqualified suggestion but if you felt better while pregnant, would it be worth discussing oral contraception with your GP and trying the one which most replicates your body already being pregnant in case that recalibrates your hormones in a way that benefits your gut?

Can/do you already take sertraline for stress?

Have you tried fasting to give the overactive bacteria nothing to work with - just boiled water for 48 hours - then introduce very simple foods like white rice, pureed pear etc and maybe even some live yoghurt or non-diary pro-biotic? You could maybe do a 2-day fast and combine it with lots of calming meditation, breathwork and yoga nidra (lying still with guided gentle meditation) to try and destress your body. And take magnesium and iron supplements.

But you have probably tried all of these.

Thank you, sorry you are going through similar - I really hope you see some long lasting improvements with your changes. Fingers crossed for you.

The stress is definitely a big issue for me, I wish I had a way of tuning it out but it's so hard when dealing with dementia. It was ages everything out of you. I also have ADHD so don't deal with stress/anxiety well.

I really do need to strip everything back to basics. I don't eat many upf's but can't lie and tell you I am 100% angelic with my diet, I need to do what you are, strip it back and see if it helps.

I eat meat with every meal as I'm always mindful that I need to include protein with every meal at my age and as I can't tolerate dairy, legumes, eggs etc it narrows things down for me but the truth is I'd rather eat vegan food as I adore animals and hate eating them. I often have this mad-capped idea that my body is rebelling against the fact I'm consuming animal products?

I will go look at the M&S bread, thank you.

I've heard lots of accounts of Mounjoro helping gut issues. I've quite a low BMI due to my restrictive diet so I wouldn't qualify for it sadly.

You poor thing sounds like you've had a miserable time for many years.

Have you ever tried a very bland boring low-residue diet, just to give your guts a bit of a rest basically.

Things like white bread, pasta, plainly cooked white fish, small amount of well cooked meat, plain biscuit, peeled fruit, boiled potatoes, boiled white rice etc.

The sort of food we would usually recoil in horror from!

Thank you. I have had various ultra sound scans and my gallbladder has always shown up as normal. I often wonder if everything is starting in my upper gut though. A recent blood test came back with low IgA levels, my GP contacted my gastro and she's ordered another gastroscope (deep joy!), but as it's non urgent it'll be a bit of a wait.

I think it really helps level out the hormones.

I wonder if a private HRT person might have advice? Particularly as you were okay during pregnancy?

I can't take combined contraception firstly because of my age (52) and also as I have a long history of aura migraines so the combined pill is a stroke risk for me (strikes run in our family).

I have tried the POP as I also have gynae issues but that made my bleeding worse.

I've taken Sertraline (and Citalopram, Escitalopram, Fluoxetine and Venlafaxine) but they all made the diarrhoea significantly worse unfortunately.

I have also tried fasting, I didn't go to the loo for 3 days and then when I started eating normally again I had an awful stomach upset and almost fainted I felt so weak. Same when I had to clear out with the colonoscopy prep. I seem to be better with food in me but it's finding the right foods and at what intervals. I seem to be better on the 16/8 IF than eating breakfast as soon as I'm up as my digestive system is in overdrive until midday.

I did in the beginning but I think I need to revisit that. Thank you. I will try it, nothing to lose I suppose.

I have been to a private gynae for HRT advice. I tried patches and also utrogestan and oestrogel but due to my gynae issues it made things worse, so she advised me to stop.

I am in a waiting list for a hysterectomy. My specialist has told me I can try oestrogen only once I've had my hysterectomy and see if that helps 🤞

I must admit reading your post my mind thought of crohn's or Colitis - but seems like you've already been tested for that. So sorry you're having such a rough time.
Understandably i guess you've got into the cycle of trying everything and now you've come up to a dead end in terms of things to try.
I'd echo what others have suggested and really strip back your diet to clear out your system.... could you manage a fast for a short time?? then reintroduce things like rice and veg gradually. A friend of mine did this and seems much better for it. Also a relative of mine has gut issues and swear by Kimchi products to settle things down.

I’ve had gut issues for at least 10 years; mostly diarrhoea, smelly poos and endless farting and occasional soiling. All my symptoms have completely disappeared on Mounjaro.

My main worry is that they’ll reappear as soon as I get to my goal weight and stop taking it. 🙁

I can tell you how I cured my post nasal drip and reflux.

I bought Willies ACV and some 000 size empty gelatine capsules (others are available if you are vegan). I opened the capsules and used a syringe to fill them with the ACV, put the lid back on and I washed six of those down with water three times a day for a week and it cured my reflux and PN drip I had had for over a year that had got to the point I was distressed and anxiety ridden at my symptoms.

I make my own kefir and my guts have improved massively for that too.

The one time in my life i had IBS type issues after getting no improvement after seeing GP I went to see a naturopath. After a long and detailed discussion he diagnosed Candida overgrowth. His recommendations were a low to no sugar diet, no yeasty or fermented foods, that's bread,cakes,anything with yeast, beer, wine, etc. He gave me a supplement to take for 2 months. It sorted it out. Side effects were a stone weight loss, never regained. Much better digestion. No more bloating, pain, bowels normal. I think you may have a couple of issues going on. Anxiety plus a gut problem. Bread is my favourite food, but also my nemesis. I cannot eat more than 2 slices a day, ever. I know what the result will be. Likewise I never drink more than one small glass of wine. I feel your pain, it is miserable for you. Maybe look up Candida.

If you are open to a restrictive diet take a look at Dr Nick Norwitz on YouTube discussing how he sorted out his own IBS/IBD. He is a medical doctor and researcher, as well as a IBS sufferer, so might be worth watching.

Wow that's interesting. Sounds like it ought to be prescribed for those with long term chronic IBS.

I've had what I suppose is chronic IBS for about 15 years but I haven't tried to explore the reason beyond doing a stool sample (negative) and a coeliac test (negative) and the GP prescribing mebevarine. I always suspected they'd be no point trying to find out why and you've proved me right.

I do feel there may be a strong hormonal reason behind it as mine has definitely ramped up since peri.

I do try to practice intermittent fasting (16/8) and would love to try a 2-3 proper reset fast but I'm wobbly by 1pm so I'd be wouldn't be functioning beyond 20 hours! I envy my DH who doesn't seem to get wobbly at all even after 3 days!!! He finds it REALLY helps with inflammation, say if is sore ankles/knees/back are playing him up...quite often a 2/3 day fast sorts him out!!

I would never go back to eating gluten. It was the first thing I had to cut out, over 20 years ago, as it gave me the worst symptoms. My body has just decided to add more things to the list since then 🙄

I also do wonder if the appalling diets of the 80s and 90s have a lot to answer for with how rife gut issues are nowadays. I basically grew up on pretty crap food. Think sugary breakfast cereals, a lot of bread (bread is not as healthy as it was when humans first started eating it since more chemicals were used in farming), a lot of dairy, a lot of processed foods like crispy pancakes, microwavable and over ready meals, crisps etc.

There are so many stories of people saying their gut issues improved after weight loss jabs, do they know why this is the case? I was speaking to a guy who said he had tried everything for his IBS but it completely disappeared after Mounjaro.

How? This sounds interesting

Oh, that's interesting. I will look into that. Have you found this better than taking avc gummies or off the shelf capsules?