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.

But then some of those items are wheat. Which for many will be a no go sadly.

I have often considered this. My stool test came back negative for candida overgrowth (I think, although I will look back on the report) but I do suffer from a sore and coated tongue frequently. I am hoping the wellbeing clinic I am going to next week may be able to help me with this.

Thank you. I have not heard of him, will check his YT out.

The only thing that worked for me was Sertraline + daily Imodium and completely removing all traces of dairy and gluten from my diet.

Yes I can guarantee I would be doubled over in absolute agony if I touched a piece of toast, biscuit or a forkful of pasta.

You are probably right regarding the crappy 80's/90's diets. I was vegetarian for many years, not a healthy veggie though, I lived off microwave veggie ready meals and Linda McCartney meals (and lots of cheese).

I think Sertraline can make migraines worse.

I also get hemiplegic migraine with aura. Has not been affected by Sertraline but I cannot tolerate the contraceptive pill

I take the ACV in capsules because of the acidity damaging tooth enamel.

I took a course of PPI drugs in 2020 without researching and discovering that it was such a hideous drug and my stomach has not been right since but strong ACV such as Willies settled it right down.

I was considering getting one of these throat trainer things (£200) even, my symptoms were so bad.

Should add that I eat Nuts, Seeds and occasionaly Oats in addition to Vegetables, Fruit and Fish.

You could have a functional Gallbladder issue which can only be seen with a HIDA scan. Do you have any sharp or dull pain in specific areas? (Sorry if you've already mentioned).

Have you tried acupuncture. It really helped me with a lot of stomach and bowel issues. As did propranolol beta blockers for stress. Which was surprising.

Understand where you're coming from. I have IBS but the constipation type plus migraines plus silent reflux. I was told that the first 2 often go hand in hand. I constantly have a dry mouth or sore throat due to the silent reflux but I don't take anything for it as longterm use of omeprazole isn't revommended. My condition varies but find that bread and bread like products like crumpets etc don't agree with me if I eat too much so limiting it say to a bread roll or a slice of toast a day is ok. If I eat too many unhealthy foods in a day then I get terrible wind and bloatedness. A specialist told me that I'm better eating what would be regarded as an unhealthy diet however for me I feel better if I eat say plain fish, boiled potatoes and veg. I don't eat meat. Light smaller meals work better for me.

I didn't even try to follow the low FODMAP as is too complicated and I didn't have any faith in the dietician I was under who was patronising and aghast that I knew drinking water helped with your digestive system!

I often see conditions like SIBO mentioned on here which is another digestive condition I think? I'd have a look on the IBS threads on here and see if there's anything that might help on there?
Have you considered intolerance in general? I see you mention dairy as one. I don't know if anything I've said is helpful. Just know that you're not the only one. Just wondering if there's any association or society that helps with IBS info etc. It doesn't help when it's used as an umbrella term to cover what isn't a specific diagnosis though!

I'm so sorry OP that you and so many others are suffering. I find the gut fascinating as there are so many things that can affect it and so much interplay between different systems of the body - mental health, hormones, food intolerances, microbiome... I've researched it a lot because DH suffers terribly but in his case it seems like it's a combination of anxiety, poor microbiome and mild gluten intolerance. He has just had to try a million things from Fodmap, probiotics, fermented foods and escitalopram to see what helps and in what combination as it seems utterly individual as to what works for each person.

I think the hormone connection to the gut is very strong for women in particular - I remember every time I had a period I would always get diarrhoea on top of everything else. I got a Mirena after DS2 was born for contraceptive reasons, initially it got worse (probably because the hormone levels were suddenly higher) but once it settled down and my periods stopped, the gut issues cleared up as well. Now I haven't had a period in a decade and I also don't get the runs every month.

I know you said you can't take HRT, is that oral or any kind? Could a mirena be an option, as I know that's used successfully in combination with estrogen, instead of oral HRT for some women?

Only thing that has helped me is when im eating hardly anything trying to lose weight. Ozempic helped with this a lot.

I know you have said you have tried all sorts, but have you given Symprove a try. DH has Ulcerative Colitis, had it since his twenties, but if he has a flare up, he has some steroids and a course of Symprove and is better for months in end. Sometimes just the Symprove on its own works.

Sorry if you've mentioned this already but I haven't read it all - have you considered going to see a nutritionist? I used to go to one who was a nutritionist and herbalist and they spend at least an hour with you during the sessions and write a full report and recommendations.

@Roselilysnowdrop would you consider using complementary therapy? My son was 26 and had been too and fro with doctors and medical experts with gut problems that were seriously impacting his life. No-one could help and he had all sorts of tests and scans, eventually being told it was IBS and to live with it.

Last year I paid (yes it was expensive) for him to go to a herbal acupuncturist who had originally trained as a doctor but after 20 years became disillusioned and branched out. It took 6 months of monthly acupuncture along with daily consumption of some herbal tea concoction but he is now feeling more normal in his gut than he has done since his teens and is back to living a full and active life.

Mounjaro and pregnancy are anti-inflammatory- I wonder if you need to explore this route with your GP.

Thanks I've never been offered a HIDA scan. I can only describe the feeling as though I have a brick logged in my stomach which is on fire!

I haven't but it's something I would absolutely love to have. Sadly I can't afford it. I've asked locally and most charge £60 per hours session.

I've often considered asking for propranolol. I often suffer with panic attacks. I was worried they would upset my stomach as the SSRIs had. You had no adverse gut side effects with those?

Surely you need some sort of fibre in your diet? You can't just not eat any, dieticians are shouting for everyone to eat more of it.

Out of interest do you know how you were weaned? There's a few studies going on about early weaning and links to gut/bowel issues later on.

Also potentially look at sourcing the old form wheat and making your own bread- it's the only sort my friend can tolerate. I can't remember the flour name but she ships it in in massive bags from France. Let me ask her and come back.

This is a completely different approach and has a huge success rate. Its not just about pain but all chronic symptoms. He also does a group coaching programme. Loads of people have recovered from chronic symptoms with this. Its worth a try, I feel like you've tried everything else and it also massively ties in with your symptoms coming on or worsening with stress.

https://amzn.eu/d/agDLMQN

I'm so sorry you're going through this - I hope they get to the bottom of it for you. Keep pushing and you'll get there. Have they put you on Nortriptyline or something similar?

I have had a similar thing this year with stomach issues and also right sided pain that they just wanted to put down to IBS. After a lot of pushing with worsening symptoms, I saw a colorectal surgeon recently who was brilliant is going to do a diagnostic laparoscopy. Sometimes it's about who you see isn't it? It has been a long process to get to this point.

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.

Right now, I manage it mostly by adopting the following approaches:

Trying simply accepting that this is how I am. It's hard, but that means not getting stressed out with each new symptom, trying to just go with the flow (no diarrhoea pun intended). I do think that maybe lessens each attack? I am perfectly aware, eg, that the last couple of weeks I have had pain, but I don't go down the 'is it cancer?' worry route. I feel nauseous most days but know that I just need to stay calm, go to bed, all will be well in the morning. Sorry if all that sounds airy fairy, but if stress is causing IBS, you have to work hard at not being stressed.

It also helps I am older than you, mostly my hormones aren't bothering me anymore.

Diet wise, I am focusing on limiting ultra processed foods. I've always been quite conscious of my diet, eat all the good things, limit the shit, cook from scratch, eat seasonally, etc. But I've just taken that to a greater extreme. There is an app you can get that scans foodstuffs and tells you where they stand on the UPF scale. I consciously avoid bad ones. Eat the rainbow, eat 30 different plant based foods a week, add nuts and seeds to things, that sort of thing. Oh and take a really good probiotic. I don't know if it helps, but it helps me to feel like I am helping myself, if that makes sense?