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?

Hi, this is often linked to bowel endometriosis. When was this last looked at? Have you had an MRI? When was your last laparoscopy, and was it at a specialist centre?

I reset mine by reducing stress and doing a couple of 36 hour water fasts.

Just had to check I hadn’t written this in my sleep.

I am also frequently in despair about what is going on with my gut. The stress it causes, never knowing which version I will experience on a day to day basis is ridiculous. I am sick of talking to my GP about it, sick of all the tests, sick of researching what might be wrong and have just about given up.

The pain last night means today will have to be a peppermint tea day.

So, I really feel for you @Backtothe80splease and will be watching this thread with great interest.

I had a pelvic MRI in Dec last year because I have been experiencing pain after a uterine ablation failed back in 2022, following decades of gynae problems. I pleaded with my gynae for a mri as I was sure something else was going on. The mri detected deep endometriosis and adenomyosis.

My gynae then referred me over to the endo team (my local hospital is an endo specialist centre). Saw the gynae in May this year, he wouldn't discuss my gut issues, said they were not related as the mri didn't pick up endo on the bowel.
This gyae has put me on a waiting list for a laparoscopy but it's at least a 12 month wait. I won't get another appointment with him until my lap date comes up.

I am also frequently in despair about what is going on with my gut. The stress it causes, never knowing which version I will experience on a day to day basis is ridiculous. I am sick of talking to my GP about it, sick of all the tests, sick of researching what might be wrong and have just about given up.

I couldn't have written that better myself. It's so bloody draining, it's it? I really feel for you.

I'm picking up on this because you mention stress - a known factor for me. Can I suggest The MindBody Prescription by Dr John Sarno? You seem to have explored every physical avenue, and his approach can come at the issues from the psychological side. It makes sense, the gut is known as our 'second brain'. 🙂

I have paid for lots of gut directed hypnotherapy and done several mindfulness courses and I did a 6 week acceptance therapy course in the Summer organised by the gastro department but they haven't had any positive impact on my gut issues.

However, I will check out the book, I am willing to look down ever avenue, anything to ease myself of this misery.

Hi OP, I have coeliac disease but found myself constantly ill despite being SUPER strict about avoiding gluten.

I learned that digestive issues are inflammation-related, and that it can take a whole month for my gut to recover from a single gluten exposure. During that month, the inflammation is still there, but reducing slowly. If I then get a bug, eat more gluten, or upset my digestive system in any way, it's a double whammy - because my gut is still inflamed.

It's like falling over onto a knee that you cut the week before - it opens up the wound again, because it hasn't fully healed yet.

Once I understood, it helped make more sense of my constant upsets.

Now, if I get an upset, I reset my digestion by a full 24hr-36hr fast - no food, just water. It's horrible but it gives time for the inflammation to die down. If it's really bad I then have a few days following of eating plain food, as if I were recovering from gastric flu: bananas, rice, eggs, plain toast etc.

Basically, once your gut is inflamed - for whatever reason - you have to work on reducing that inflammation. Everything else is just tinkering around the edges.

Conversely, now that my digestion is so much better, because overall I have less inflammation, I have less sensitivity, which in turns means my body is better able to cope with occasional upsets.

Does that make any sense? I know I have coeliac but the principle may apply to you as well. Best of luck x

My DH had very similar problems and he has massively improved the situation by cutting out ultra processed foods from his diet.

I was quite similar a couple of years back, I was going through a stressful time which didn’t help. I cut out dairy and have been so much better since

Have you tested for SIBO ?

Might seem a strange thing to write but have you had your gallbladder checked? I was very similar to this, then had a gallbladder attack and found it was full of stones, had it removed and very much better since.

I'm really sorry you have suffered so much with your digestive system.

Tbh, I was very much expecting somewhere in my gut to be inflamed, it certainly feels that way most of the time yet I have had two colonoscopies, an endoscopy and a pill camera endoscopy but there was no sign of inflammation, no polyps, no small areas of irritation, nothing. I was awake for the colonoscopies and the gastro said everything looked perfect. Makes zero sense to me as that certainly does not correlate to how I feel a lot of the time.

When I am feeling particularly bad I literally drink water only and very little else. Everything seems to trigger the symptoms on the very bad days yet I have still to discover what actually is the trigger.

I don't consume any UPF but do notice that I feel extra rough on the odd occasion that I do fall off the wagon.

Urgh, this has been a big issue for me.

Last year I paid privately for a comprehensive stool test which flagged up dysbiosis. I mentioned it to my gastro and asked for a SIBO test. She was very hesitant, she said the tests are very unreliable and most people with SIBO have serious health issues such as diabetes so she couldn't imagine why I would have it. She did eventually agree and it came back positive for hydrogen SIBO. She was still quite negative about it but did give me a prescription for Rifaximin which I was grateful for as it's super expensive privately. However, she offered no support and I won't see her for a follow up until next May. I also consulted with my NHS dietitian and she agreed with the advise from my gastro which was to ignore the SIBO test and to concentrate on the low fodmap diet and hypnotherapy etc.

Sadly the Rifaximin made me feel awful and I feel no better. I don't have £300 for a private presciption for Rifaximin or I have also tried various supplements on top of the low fodmap diet which is recommended for sibo but still have these gut issues.

I have fallen down a bit of a rabbit hole where sibo is concerned and I have purchased several books in the subject, joined lots of FB and Reddit support groups and I watch endless YT videos about it. They all seem to offer conflicting advice. It appears to be quite a controversial subject and most of the people I speak to on the support groups have spend hundreds of pounds on consultations and supplements with private clinics, I can't afford that. I really don't know what to do about this one tbh.

Feelingleftout I had an upper abdominal us scan in July, it came back all ok.

I eat the same foods every day.

This probably isn't very good for your gut microbiome. It needs a varied diet to nurture diverse microbes.

Sorry if this is a repeat as skim reading due to school pickup….I take one or two ‘gut’ capsules a day - millions of good bacteria. In addition
natural Greek Yoghurt (not Greek Style) at least once a day with blueberries.
Hope something in the many replies helps you.

Have you been tested for any and all types of parasites? Even if you have never travelled, there are some things you can pick up in the uk.

Cryptospiridium and giardia llamblia (sorry if spelling is wrong) are two, there are other worm type things I think. Also, if you tested positive for SIBO, surely that should be properly followed up?

My digestive problems have been a LOT less bad than yours so I appreciate my advie needs to be taken in the spirit it's intended and not as gospel truth.

Two things in particular:

1 with your food diary - have you looked at food combinations and/or timings? When I was at my worst, there were quite a few things I could not have in combination. eg I could not eat red meat and carbs together. Individually - fine. Together - not a chance in hell. The big one for me now is coffee and milk - I can have coffee and milk, but NOT as part of a meal or, increasingly, even after a meal. So a flat white or something an hour before I eat is fine, but otherwise, no. But coffee with just a small amount of milk or milk in anything, is largely okay pretty much any time. THen with eggs - I can eat them fine, but no way can I touch an egg or any product with egg in it before I've been awake for at least 2 hours, ditto most fruits. Intermittent fasting is working well for me here too as I simply don't eat anything until 12:00.

2 eating the same food is actually really bad and yes, you do need more pro biotics. It's worth researching and looking for very high quality ones - I'm not convinecd about the ones you get for a tenner from Boots. if you really can't tolerate them, I'd highly recommend you think about how you can increase the diversity of the food you eat. We are fairly obsessive about 30 different plant foods a week in this house and I've been very pleasantly surprised by how it works and how we all seem to have much better functioning guts. There are lots of relatively easy ways to do this.

Something else that I found 9and again, this might just be me) is that salad seemed to always have a very positive impact on my digestion. So when things were really bad, or if I'm feeling really sluggish, I make a point of salads with my meals with a bit of olive oil and balsamic vinegar. It's like a cleanse but with very neutral foods?

I was starting with the same symptoms, some days it really felt as though I had eaten crushed glass. I stopped eating onion and garlic which did help (I see you have too) but apparently my system also doesn't like tomatoes. So I can't eat spaghetti bolognese or pizza or anything with tomato/sauce base. At one point I couldn't even have tomato ketchup 😱 I've eventually returned to small bits of ketchup or a slice of pizza once or twice a fortnight without a flare but most meals with sauces are now cheese/cream based. I haven't cracked it yet but it's definitely stopped being as bad.

Lots of bran in my porridge and 18 hour intermittent fasting cured my morning rush IBS symptoms.

I discovered the bran by accident, a holiday home I was staying in and it in their cupboard and I added it to my overnight oats and it was somehow almost instantaneous improvement!

I don’t know how old you are but my problems stopped when I started HRT. I’m still a bit sensitive but nothing like I was.