Daily digestive issues, what am I doing wrong, am I missing something, how do I get better?

[Backtothe80splease]

I have suffered from a malfunctioning digestive system for decades but the last 6 years have been dreadful and nothing I do or try has helped to re-set things, it is gradually getting worse.
I have had lots of gastro tests over the last 5 years (2 colonoscopies, a gastroscope, a bile acid malabsorption scan, coeliac test, h pylori test, scans etc), everything comes back ok yet I am still struggling from the following issues,

Loose, sticky stool (No.5 on the Bristol Stool Chart). I have the urge to go as soon as I wake up and will often go around 3 times just in the morning (I just can't organise anything first thing, because of my overactive gut).

Randomly, a few times per month I will become more constipated (No.1 on the chart) but no idea why as I eat the same foods every day.

Dreadful nausea, burping, acid, growling guts (this often occurs mid cycle).

Bloating, lower gut gurgling, pain, flatulence and discomfort (this often occurs in the evening).

Rectal hypersensitivity/discomfort throughout the day and feeling like I need the loo, or I might poop myself!

A general feeling of digestive malaise throughout most days.

(I keep a food and symptom diary and just can not see a pattern to anything)

I have invested so much time and money trying to re-set my guts and gain some control back that I no longer have any more money to chuck at this and will need to try this alone from now on (I have recently given up work as it is really affecting my life now).

These are all the things I have tried, many I still stick to and some have not helped.

Low fodmap diet - I continue to eat this way as well as avoiding my known triggers which include dairy, wheat/gluten, high fibre foods, artificial sweeteners, eggs, chicken, onions, garlic, certain fruits and veg, caffeine and high fatty foods.

I only drink water with the occasional herbal tea.

I start eating around 10am (can't face food before then) and stop at 7pm so naturally IF due to my symptoms.

Exercise;- I walk the dog for an hour a day, each day and use my exercise bike. I am not overweight as I don't eat a lot, too much food at once makes me feel quite unwell.

Meditation/yoga every day (I listen to the Calm app).

I have paid £££'s for gut directed hypnotherapy over the years including the Nerva app which was lovely but did nothing to help resolve the gut problems.

Have tried various medications including Mebeverine and other antispasmodics, Peppermint oil, Pepto Bismol (sadly no longer available in the UK but it did help). I take Imodium a few times a week, It doesn't improve the stool consistency and I have to be careful that it doesn't stop me going so only take a few times a week but I don't think it does a lot tbh.

Tried Sertaline and Citalopram but they gave me bad diarrhoea as did PPI's prescribed for the upper gut issues.

I tried probiotics in the early days but they made me feel worse and tbh I am apprehensive to try again but maybe I should?

I really do not know what else to try, I am at a complete loss. I will add that I am in perimenopause and also have endometriosis which may not be helping the situation. I can't take hrt as it made my endo worse.

Tbh, if I could solidify my stool more and reduce the activity which always seems to be going on in there I would be a happy bunny and would put up with everything else, the loose stool and hyper active bowel really stresses me which obviously does not help the issue.

Any ideas how to ease all of this? Something which I may not have thought of?

I had some similar issues.

I was advised to follow a low fat bland diet which helped then to follow a coeliac diet (which helped even more). If I have stomach pains I find heat helps and Buscopan mint (the one for cramping pain).

I now don’t eat B R O W Barley, Rye, Oats (except GF oats) and Wheat. I also ensure I exercise regularly and drink plenty water.

www.celiac.ca/wp-content/uploads/2021/12/Label-Reading-Food-Banks-SaveMe4GF2021.pdf

I'm so sorry, OP - it must be so hard not knowing! Sorry I couldn't be of more help, and hope you find something that helps soon x

LetsNCagain I know, I am certain my lack of food diversity has contributed to my gut dysbiosis and making my symptoms worse but it's such a vicious cycle for me. The very act of eating flares up my issues and anything new or different often triggers more symptoms which then sets of the anxiety that I have regarding throwing up or having bad diarrhoea attack. I have been advised by my dietitian to add teaspoon or tablespoons of new foods at a time and to do it gradually, I am trying to do this but every time I feel unwell in the stomach I retreat back to my 'normal' diet.

Thank you Horse7 can I ask which 'gut' capsules you take?

Ovalframes I did a comprehensive stool analysis last year and all the parasites tested for came back as clear.

My gastro and dietitian have both told me not to concentrate on the SIBO citing it as something only those with serious health conditions develop and stating the tests are very unreliable. They are simply not interested.

OhBling I have often thought about my food combinations. I have noticed when I eat something plant based with carbs I seem a lot more settled. I often wonder if I have low stomach acid issues because meat does seem to cause me some upper digestive issues. I can no longer eat eggs on their own but strangely seem ok with a little egg in a recipe (Yorkshire pudding etc). I need to look into this a bit more.

It is funny that you mention salad because raw veg completely goes against the standard advise for IBS yet I seem to tolerate salad veg more than cooked veg (even low fodmap ones).

I would love to eat a wide and diverse range of foods but in all honesty the more my symptoms progressed the more I developed a fear of foods in general, seems these days that so many foods trigger me that I have become so very wary of food in general. I know that is damaging my microbiome even further.

Pixiedust1234 I am the same with tomatoes, which is such a shame as they are one of my most favoured foods, love baby tomatoes but I have had to remove them from my diet for the time being as I end up feeling as though I have swallowed the contents of a car battery, the pain is awful.

Cashew1 oat bran or wheat?

lovemybunnies I am 51 and most definitely in the depths of perimenopause. I tried hrt but it flared my endometriosis and adenomyosis pain so my gynae advised me to stop.

Thank you Rasputin123

I've written about my digestive system a lot on here and can relate to some of what you;re saying. I have also had a lot of tests -camera up and down, ultrasound x 2 (private and then nhs), small bowel mri, stool and SIBO (most recently).I was positive for h pylori but the treatment didn't make much difference, other than that, nothing of note was found.
I am post-meno but this all started over 2 years ago in peri (and after a bad bout of Covid).
I'm thinking of getting GI mapping done. You pay about £300 and do a stool sample and it's checked for a range of things (best to google what they test for) and then you get a good picture of what's going on if there's nothing showing up on 'traditonal' tests.
My symptoms are - GORD - have an official diagnois of this and I use gaviscon advance mainly and have adjusted my diet massively. I have been on the acid watcher diet which helps a lot, but is not a 'cure'. I try to not eat at least 3 hours before bed, preferably 4-5 hours if I can.
Also I get quite bad wind as well which ramps up in the evenings. It used to start lat morning so it has improved a lot, but I still have to be careful if I'm going out not to eat anything wind-inducing (ie too much fibre, definitely sensitive to this, but not a specific food per se). If I'm going to the theatre or something where I really can't get up and use the loo I'll take windeze beforehand. GPs have mentioned IBS but I don't get the pain that others do with it and don't get diarhorea, just wind. I also got a lot of gurgling on my rhs - it used to be every time I ate something or at least daily, but that seems to have eased off recently as well although I still get flares (seem to be the same time as the really excessive wind when I am literally running to the loo to fart explosively every 20 mins - this hasn't happened for about 5 weeks now).

In the same boat here too OP. Perimenopausal, endometriosis and coeliac.

Have had digestive issues my entire life, with seemingly no pattern/rhyme or reason. I cook from scratch, rarely eat UPFs or takeaways, and try to eat a good variety of fruit & veg, seeds, lean protein etc. Drink mostly water and herbal tea with the occasional oat milk coffee as a treat.

Quit my stupidly stressful job 6 months ago, which hasn't helped as much as I hoped it would.

Also watching this thread with interest.

I completely get this as well. Totally bored of the whole thing especially the restrictive diet.

That's good you are looking to diversify your diet a bit and that your dietician suggests the same, albeit gradually.

It takes time for the gut microbiome to alter, so just trust the process your dietician advises, you might be unsettled for a bit but you'll strengthen your gut in the long run.

Digestive symptoms can be made worse by fear and anxiety so if you're expecting to be unwell that can make it worse. You could try to trick your mind by eating similar meals to what you usually have but with a twist. Say for example, you usually eat mashed potato- add mashed sweet potato and turnip to it. And so on.

I'm convinced that a varied diet and healthy gut microbes are key to many aspects of health.

People often advise things like kombucha, and sauerkraut or kimchi for gut health but those are quite tough to manage and people over here eat bonkers quantities when traditionally it's supposed to be a garnish. I'd start with more varied grains and unusual veg, cooked simply. Things like wild rice, okra.

Totally different story from yours but I mucked up my gut many years ago when I had a brief but acute eating disorder. For years after that I had a very weak and delicate digestive system. But this is how I built it up again. I also ate a lot of fresh fish, for some reason my body craved it a lot. I did progress to kimchi (in tiny amounts with rice etc). But mostly, even now, I'm always eating a wide variety of fibrous stuff, especially grains and vegetables

It is funny that you mention salad because raw veg completely goes against the standard advise for IBS yet I seem to tolerate salad veg more than cooked veg (even low fodmap ones).
I would love to eat a wide and diverse range of foods but in all honesty the more my symptoms progressed the more I developed a fear of foods in general, seems these days that so many foods trigger me that I have become so very wary of food in general. I know that is damaging my microbiome even further.

V v minor thing you could try to help with the biome if you find salad helps is things like mixed salad leaves rather than just one type of salad. Drizzle of vinegar for the acid/ fermented or whatever. if you can tolerate peppers, more than one colour .... all upping the gut diversity.

I read somewhere that some people have some issue with digesting protein, and it can be worse in the morning. Which is what I assume is my problem too. Might be worth researching?

Very similar to me, I am certain peri has worsened all of my gut issues. I never used to experience upper gut issues until I hit the age of 45. I was certain I had GORD but the gastro says it's just functional dyspepsia.

I too get the gurgling in my right side, it's as though something has squeezed my colon causing some king of back up, I get so much gas in the evenings, I too have the running to the loo with excessive wind, really embarrassing when in company, I end up holding it in and giving myself a terribly bloated stomach..

I have the Acid Watchers Diet book and really need to get into that.

Just noticed your username, absolutely agree to that.

bestestBrownies I really do hope something helps you, it's really not a fun way to live, is it?

Thanks LetsNCagain I really long to eat a wide variety of food. I had ARFID as a child which has reactivated since having these gut issues, I have to take it really slowly but I am determined to get my digestive system to a more tolerable level...one day.

OhBling I do need to add in some bitter herbs and leaves as they are supposed to be good for supporting digestion aren't they? And I must find a good salad dressing using some olive oil and maybe apple cider vinegar. I have found I am a bit better without meat so I may try going a bit more plant based.

OhBling I do need to add in some bitter herbs and leaves as they are supposed to be good for supporting digestion aren't they?

For me, yes. No idea about officially! Cucumber, peppers too. I can boost a bit with avocado to make it a bit more substantial. Grated carrot MAYBE. Basically thigns with lots of water in them!? . I just use olive oil and a bit of balsamic vinegar. We do chicken salad with some left over roast chicken and added spring onions and pine nuts (you might want to skip that) and feta cheese sometimes when I feel like I need a BIG salad to help my digestion!

How long did you try the probiotics for? I tried quite a few cheap ones, which had no effect. Then tried really expensive fermented ones which made me feel rougher for a week or so before slowly oh so slowly improving. After about four weeks I definitely saw a difference but it took another month to clear up totally.
If you haven't, it is worth trying really really good ones, and persevering with them. Take them at least 2 hours after food/drink, and 1 hour before food/drink (except water).

Hi OP you asked which probiotic I take - it’s Optibac, bought online.
Btw you mention tomatoes don’t agree with you - I’m not surprised, apparently they are very acidic so I don’t eat them anymore.

I find no alcohol has helped and an Asian diet, mostly Thai curries, and sushi with white rice, noodle soup etc. No chocolate (but strangely vegan chocolate is fine), and no meat.

You haven't lived anywhere tropical have you?

I remember when I was a kid a friend's mum was always ill. Many years later they found a fluke on her liver which had been there since she'd been a missionary in India as a young woman. Someone finally referred her to the London School of Tropical Medicine...

I'm sorry though. It sounds awful. I have meno and endo and (possibly) coeliac or at least an intolerance, but fortunately I can take HRT and a Mirena finally sorted the endo.

Has anyone tried this wild-dose.com/products/a-dose-for-bloating I have awful problems with bloating and digestion and Im wondering if anyone's had good experience with this? I think I'll order some and report back of it helps. I've also started to take some propolis in water to help with the inflammation and damage from acid reflux and gastritis. I think as a PP said, I definitely feel worse after I've had an episode and everything feels very inflamed and acidic and unwell

I second reading The mind Body Connection by Dr Sarno.. it may seem like a 'snakeoil' solution but I found it absolutely amazing especially when I had dreadful back spasms ..

But gut.. I also have the same, and after trying pretty much everything,the doctor prescribed Questran for it ( I didn't have a Bile a is test because of the long wait but they agreed to let me give it a go anyway).
TBH it's been amazing.. I still get the odd day of bad morning diarrhoea but its usually only when I have eaten too much of the wrong fats ( which I try not to do , but sometimes you don't realise / do it anyway and I am human after all. ). And now I can eat pretty much all vegetables and pulses again without too many bad effects the day after.
Worth asking?
I take one sachet a day ATM ..

I tried some H&B ones for a few weeks but they exacerbated my gas issues.

I may look into trying another type, it has been suggested that I try Symprove but it's very expensive.

No, the most exotic place I have visited was Florida lol. I have read about liver flukes, they are not a pleasant thing at all.

I opted for a uterine ablation instead of a Mirena and to date it has been my biggest regret health wise. The ablation failed causing more pain and because of the scar tissue they wouldn't be able to insert a Mirena now. I am so disappointed that I chose to go through with the abaltion.

I have been tempted to try the Wild Dose bloat capsules, they do appear to have good online reviews.

@Backtothe80splease - have a read of acid watcher and see what you think.
The wind is awful, and then keeping it in when you really need to let it out! I have become a semi-hermit these days as can barely eat anythhig out and then I'm scared of my wind situation when I do go out!

@Backtothe80splease I have ordered them and will come back and update. I've done a lot of the probiotics too, including Symprove. I find water kefir and kombucha help a bit but not enough

Yes, it's to be expected that they make you worse at first. They are basically battling for supremacy in there! You do have to power through the initial stage unfortunately.

Sadly, that's exactly my current situation.