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Original poster

I am at breaking point with my horrible digestive issues, I don't know what to do or who to turn to anymore.

123 replies

Anothershittydayinparadise · 06/02/2025 08:41

I feel so lost and alone with this and don't know what to do anymore. My doctors are no longer interested, my family have had enough. This will sound ridiculous to anyone who hasn't suffered from gut issues but I feel broken by it all, it is so relentless.

I was first diagnosed with IBS 27 years ago. Mainly diarrhoea type IBS with occasional constipation (usually mid cycle constipation). During my 30's I could control it well by following the low fodmap diet, avoiding my triggers (dairy, wheat, gluten, artificial sweeteners etc), no alcohol/caffeine (I only drink water), exercise, yoga, meditation and gut directed hypnotherapy. I'd suffer from flare ups around my period and when stressed etc.

However, around 6 years ago my symptoms became almost daily. I have had lots of tests which includes:-

2019 - gastroscope with biopsies for coeliac disease, h pylori, and malignancies etc and a colonoscopy without biopsies as everything looked clear
2022 - A pill camera endoscopy to check my small intestine
2023 - Another colonoscopy but with various biopsies to check for microscopic colitis etc
2023 - a SeCHAT scan for bile acid malabsorption

All of these came back ok but I was still struggling with gas, bloating, nausea, acid, excessive gurgling. flatulence, morning diarrhoea, sometimes constipation etc.

Weirdly I am better in the evening, not always, but often 🤷

But I've been so worked up this last month or so because of a change in my normal habits.
At the beginning of Jan my bowels shifted to very loose stool every single morning (no idea why as I'd not changed a thing), not well formed at all, slimy and a mud-like consistency (sorry if tmi). I have to go as soon as I wake at 7am. This morning I was woken at 5am.

None of my usual 'tricks' are helping.
Usually a couple of days of imodium, or mebeverine or even calcium tablets would fix this but nothing is helping to return to my 'normal'. I even spent a small fortune on a product called Enterosgel which has been supposedly clinically proven to help diarrhoea but it has done nothing to help ease this. This has continued so a couple of weeks ago I went to see my GP, she arranged for stool tests for h pylori, a FIT test, calprotectin and another for bugs/viruses etc but they are all clear so she says there isn't much more she can suggest.
I spoke to my gastroenterologist last week but she's not interested either as all tests appear to be clear although she has prescribed an anti nausea med which I pick up tomorrow from the hospital.

I am at an absolute loss and am miserable. How the hell am I going to fix this? It's controlling my life, I'm barely going out, only to do the absolute necessary things.

I've tried probiotics, kefir (made me worse as I can not tolerate dairy), dropping my carbs (I hate eating just meat and can't afford to tbh as I'm currently not working). I'm listening to my gut directed hypnotherapy at least twice a day, nice and relaxing but it's not helping at all.

What the heck is going on and what can I do to bring some harmony back to my upset digestive system. Can anyone suggest ANYTHING, has anyone had experience of this and managed to feel better and return themselves to a normal rhythm?

OP posts:
UncertainWife · 07/02/2025 14:44

I'm sorry you're going through this.

I've had gastro issues myself on and off over the years. It's always been manageable but is just starting to become unmanageable, so I'm at the beginning of my journey with going to the drs and getting tests. I'll keep this thread as something to refer back to if no solution is found for me.

I hope you can find a solution very soon. It's miserable.

Marilyn17 · 07/02/2025 17:52

I'm suffering too. For the last few weeks I've suffered from nausea, gurgling stomach that actually eases when I eat something yet it's not the usual stomach rumbling you get when hungry. Also, I get bouts of diarrhoea every so often but not all the time. Over the last few years I've started with digestive problems but it's been put down to a hiatus hernia and I've always been OK after a short course of Lansoprazole. However, I've never had this nausea before, it's not constant, sometimes I go a day without it and I think it's gone then, like today, it comes back with a vengeance. I do have a lot of stress in my life and I'm also overweight. I'm sorry for anyone who is suffering from digestive issues, it really gets you down!

Original poster
Anothershittydayinparadise · 07/02/2025 18:06

UncertainWife · 07/02/2025 14:44

I'm sorry you're going through this.

I've had gastro issues myself on and off over the years. It's always been manageable but is just starting to become unmanageable, so I'm at the beginning of my journey with going to the drs and getting tests. I'll keep this thread as something to refer back to if no solution is found for me.

I hope you can find a solution very soon. It's miserable.

I'm sorry you are struggling too. I do hope there is something suggested on here which will help you.

OP posts:
Pootlemcsmootle · 07/02/2025 18:08

OP I don't actually think it's a problem with your gut or what's in it, I think it's a dysregulation of the nervous system that connects your brain to your gut/digestive system. That usually tells everyone's gut to automatically do all the normal digestion things and we don't even think about it but yours might not. People often say it's mental health but it's more nuanced, it can be that a stressful childhood (no matter how calm you've been for years) can have caused damage to this normal functioning.

It's worth trying to see if this is what it is. You need to stimulate the gut / intestine muscles manually lying down and massaging them a lot in a circular motion from stomach to the intestine valves and then through to the bowel. Deep breathing also stimulates it. Really invest in both timewise, there's a lot of science behind it, so worth a try.

If you have this that'll be why nothing shows up on tests.

LapinR0se · 07/02/2025 18:09

@Anothershittydayinparadise i had an almost identical set of circumstances and the only thing that helped me was antidepressants. As soon as the anxiety was addressed, my bowels calmed down

Original poster
Anothershittydayinparadise · 07/02/2025 18:10

Marilyn17 · 07/02/2025 17:52

I'm suffering too. For the last few weeks I've suffered from nausea, gurgling stomach that actually eases when I eat something yet it's not the usual stomach rumbling you get when hungry. Also, I get bouts of diarrhoea every so often but not all the time. Over the last few years I've started with digestive problems but it's been put down to a hiatus hernia and I've always been OK after a short course of Lansoprazole. However, I've never had this nausea before, it's not constant, sometimes I go a day without it and I think it's gone then, like today, it comes back with a vengeance. I do have a lot of stress in my life and I'm also overweight. I'm sorry for anyone who is suffering from digestive issues, it really gets you down!

I suffer from those same upper digestive issues and often feel better after eating but it's a vicious cycle because I don't always want to eat when I feel so nauseous and with such a gurgling gut.
I often say that I believe my gut issues are generated in my stomach but my gastro just keeps saying it's IBS and functional dyspepsia.
The stress certainly doesn't help does it but I'm struggling with that too, not easy to overcome some stressful situations.
I hope you manage to find a solution to it all.

OP posts:
terracelane23 · 07/02/2025 18:13

I feel instantly better when I have some almond milk. I've had a burst stomach ulcer in the past and I have GERD. I'm on medication and control it as best I can with lifestyle, but almond milk really does settle it quickly. Worth a try.

ForeverDelayedEpiphany · 07/02/2025 20:12

LapinR0se · 07/02/2025 18:09

@Anothershittydayinparadise i had an almost identical set of circumstances and the only thing that helped me was antidepressants. As soon as the anxiety was addressed, my bowels calmed down

Yes, the gut brain connection and axis is very real. Hence why the doctor offered antidepressants to my DH to help his IBS that seems to flare up and be related to when he gets more anxious.

There are lots of serotonin and dopamine receptors in the gut too (also why it's called the "second brain"), and why we get "butterflies" when nervous etc too.

Original poster
Anothershittydayinparadise · 07/02/2025 20:32

terracelane23 · 07/02/2025 18:13

I feel instantly better when I have some almond milk. I've had a burst stomach ulcer in the past and I have GERD. I'm on medication and control it as best I can with lifestyle, but almond milk really does settle it quickly. Worth a try.

Thank you. I do drink almond milk as I can't tolerate dairy. Doesn't help much sadly.

OP posts:
Darkmorningsarethepits · 07/02/2025 20:38

Pancreatic insufficiency?

wonder if your gastro doc would consider a trial of Creon

ThatNoisyPearlSquid · 07/02/2025 22:17

Anothershittydayinparadise · 07/02/2025 09:15

Thanks PrincessOfPreschool that's encouraging and glad to hear you are feeling better. I did try Citalopram but it made me feel worse but I have been offered Escitalopram, I need to try that and see if I do better on those.

Pebbles16 I do very much agree with your gastro. I do need to experiment with peppermint oil again. I used to take Colpermin religiously and it worked so well then just stopped helping but I will give it another go and see what happens. Thank you for your reply x

Laska2Meryls My gastro did suggest Questran light before my SeCHAT scan but then never mentioned it again once the results were clear. She did say she rarely prescribes it for IBS patients but perhaps she would be able to trial me on some? I will contact her and see what she says.

RoadsGoEverOn I would love to try a vegan diet tbh as I really don't enjoy meat but have been worried the extra fibre would wreck me but perhaps I could start with low fodmap levels and work up from there?

ThatsWhatImTalkingAbout I 'treated' myself to a fully comprehensive stool analysis for my 50th a couple of years ago, it wasn't with Chuckling Goat but it did flag up a few things including gut dysbiosis which ties in with the SIBO that I tested positive for a few months later. I wished at the time that I had gone for this test via a naturopath as I didn't really have much support following the results. I am trying to save up to do this again but via someone who could advise me better. I will take a look at Chuckling Goats website though (I have purchased their soaps in the past).

Thank you Hollyhocksandlarkspur I definitely hold a lot of tension in my body (tummy, neck, shoulders etc) and I have worn some of my back teeth down because I clench my jaw and grind my teeth. I hold my breath too much as well although I am constantly working on that. I was taught body scanning by my hypnotherapist and do note that I am very tense all the time but it appears to be such a default setting for me. I do need to keep working on this as I know it is not helping the situation.

We have everything in place for my mum (AA, morning carers, day centre twice a week etc).

MissMoan You really have my complete empathy, that's exactly how I get, I dread the mornings these days as it all sets off. I really hope there are some solutions suggested on here that will help you too xx

catzrulz I did have the SeCHAT scan a couple of years ago but it came back clear.

Thanks Milosc a couple of people have suggested kombucha now, I really need to give that a go.

Santina I am definitely going to drop meat for a while and see if that helps me. I often wonder if I have low stomach acid and my digestive system can not handle meat? It's funny how you mention raw foods. IBS patients are always told to cook all their veg etc but I find my tummy is calmer when I eat salad than when I eat cooked veg, even low fodmap ones.

PearlCity I do already avoid most trigger foods but I do wonder if I need to go very very basic and work up from there.

Thanks ThatNoisyPearlSquid I have read about L-Glutamine helping IBS patients, I need to look into that. Ill get some broth in especially as there are some days when I really don't want to eat at all so that will be helpful. I have Nortrityline here at home already but was put off taking it due to the potential dementia risk but if I could only take it a short while as you have and hopefully get it to 'reset' things, I would be happy taking it for only a few months. Can I ask what dosage helped you?

jelyfishperiwinkle I have had a lot of gynae issues over the last 30 years. Over the last 13 years I have had endless uterine polyps removal via hysteroscopies, treatments to reduce a constant thickened uterine lining and a uterine ablation in 2022 which has failed leaving me in pain during each period. I requested a MRI in December 2023 and it was discovered that I have deep endomtriosis and adenomyosis. I am on a long wait for a laparoscopy, I am convinved some of my gut issues are related but my endo gynae won't discuss my digestive issues, when I tried to bring this up in conversation he waved his hand in my face and said it was nothing to do with my gynae issues at all but then contradicted himself by saying if he finds endo on my bowel during the lap then he will stop the operation and I will need it done again at a later date with a colorectal surgeon on standby!

I was on 10mg, unsure if I should have tapered myself off but it's a relatively low dose so I just stopped cold after three months and I was fine. I was also reluctant about being on it and hated the idea of being on it long term so for me it was a, let's try this out for a few months and see because I couldnt deal with the constant pain and discomfort anymore, luckily it worked!

voubledision · 07/02/2025 22:23

My god daughter went onto a plant based diet and then slowly reintroduced things which helped her.

Have you been tested for pancreatic insufficiency?

Winterscoming77 · 07/02/2025 22:39

Reflexology once a week for 6 weeks then once every 3/4 weeks.

MastieMum · 07/02/2025 23:00

Histamine intolerance, as someone previously mentioned, is worth looking at. The SIGHI list is helpful. It categorises foods by histamine level. It is fairly comprehensive. Antihistamines may also help, if it's that. A low histamine diet really helped me, and was noticeable quickly.

worldwidetravel2017 · 08/02/2025 09:05

Havent read the whole thread

But ask nhs gp
For ca125 blood test

If results is abnormal - could be endo

I had an IBS diagnosis
But a consultant is pretty convinced i have endo too

( My ca125,.= abnormal)

Original poster
Anothershittydayinparadise · 08/02/2025 11:09

Darkmorningsarethepits voubledision I have often wondered if pancreatic insufficiency could be an issue? I will see if I can get a GP appointment next week and ask about that.

MastieMum I love reflexology and would willing have a weekly session but I am not working atm and sadly can not afford it. I will definitely start looking at the low histamine diet as several have suggested this.

worldwidetravel2017 My endo gynae ran a CA-125 blood test a year ago, it was low at 19 (I had the same results a year before that) but I will ask my GP next week and see if I can have a repeat. I am already on a waiting list for a laparoscopy though as my MRI detected deep endo and diffuse adenomyosis.

OP posts:
colinthedogfromaccounts · 08/02/2025 11:16

I know this sounds mad as, but it helps my DH (IBS sufferer for 30 years). He has 2 x paracetamol and a 20mg medium tablet and it really calms things down (at least for a few hours so he can have a reasonably uninterrupted day).

Oblomov25 · 08/02/2025 11:54

I have every sympathy. Dh has diverticulitis from a young age and all HCP's seem dismissive and uncaring. I think you just have to realise that you are alone, and no one is going to make this any better other than you. Hope you can find a solution.

LostittoBostik · 08/02/2025 12:01

Given your updates I would do two things:

  1. Seek the best probiotic support you can afford. See a professional nutritionist if you can to work out what supplements would help your gut.
  2. This is the really important one: start going to therapy. I suspect most of this is to do with your mental health expressing itself through your body. You really need to address what's gong on underneath
Original poster
Anothershittydayinparadise · 08/02/2025 12:49

colinthedogfromaccounts That's interesting, at this point I am willing to try anything so will give it a go.

OP posts:
Original poster
Anothershittydayinparadise · 08/02/2025 12:59

LostittoBostik · 08/02/2025 12:01

Given your updates I would do two things:

  1. Seek the best probiotic support you can afford. See a professional nutritionist if you can to work out what supplements would help your gut.
  2. This is the really important one: start going to therapy. I suspect most of this is to do with your mental health expressing itself through your body. You really need to address what's gong on underneath

Sadly, as I have mentioned in a few of my replies, I am currently not working and just can not afford any private help atm.

In saying that, over the years I have spent a small fortune seeking the advice of nutritionists, dietitians and other therapists. I have had many CBT therapies on the NHS. Paid for hypnotherapy, had EMDT and seen a psychologist.

One nutritionist was adamant she could 'cure' me within a month if I simply ate 10 different vegetables per day. I embarked on her plan and within 2 weeks (and £300 lighter) I was tied to the loo every day and in so much pain. She wanted a further £150 for a follow up. Another said she could offer to me help but in the form of £200 worth of supplements.

I have found during my 27 year journey with all of this that there are a lot of so called therapists out there who are more than happy to take money off the desperate. It is so hard to find a decent naturopath, nutritionist or therapist in the UK even those registered. Well, sadly that has been my experience anyhow.

I am definitely going to experiment with some probiotics though, I can at least afford that.

OP posts:
SunflowerSeahorse · 09/02/2025 10:34

I do empathise. I have similar issues since I had my gallbladder removed. A colonoscopy revealed a happy, healthy colon.
My IBS is definitely exacerbated by stress; when I changed job, almost a year ago, the frequency of my issues slowed right down. I also take turmeric with black pepper bought in Savers. They definitely help me a lot. When I ran out of them, the diarrhoea came back.

I am at breaking point with my horrible digestive issues, I don't know what to do or who to turn to anymore.
theduchessofspork · 09/02/2025 10:38

I am really sorry OP - having had some gut issues of my own it’s miserable.

I think as nothing is showing up medically you are going to have to work through dietary and lifestyle treatments.

Probiotics vary and symprove is really helpful for me, so that might be worth a go - not cheap but if it helps it does.

theduchessofspork · 09/02/2025 10:41

Anothershittydayinparadise · 08/02/2025 12:59

Sadly, as I have mentioned in a few of my replies, I am currently not working and just can not afford any private help atm.

In saying that, over the years I have spent a small fortune seeking the advice of nutritionists, dietitians and other therapists. I have had many CBT therapies on the NHS. Paid for hypnotherapy, had EMDT and seen a psychologist.

One nutritionist was adamant she could 'cure' me within a month if I simply ate 10 different vegetables per day. I embarked on her plan and within 2 weeks (and £300 lighter) I was tied to the loo every day and in so much pain. She wanted a further £150 for a follow up. Another said she could offer to me help but in the form of £200 worth of supplements.

I have found during my 27 year journey with all of this that there are a lot of so called therapists out there who are more than happy to take money off the desperate. It is so hard to find a decent naturopath, nutritionist or therapist in the UK even those registered. Well, sadly that has been my experience anyhow.

I am definitely going to experiment with some probiotics though, I can at least afford that.

Show quote history

I have to say that anyone that thinks the gut issues you describe can be fixed by a sudden change to a load of vegetables is a looney who knows nothing about the gut..

SpiritOfEcstasy · 09/02/2025 11:40

Have you seen a herbalist/acupuncturist? It truly sounds as if you have exhausted all the investigations of the end result/symptoms that western medicine has available, I would recommended seeing a TCM practitioner and treating the root cause. Digestive issues are predominantly connected to stomach heat/damp but a qualified practitioner would be able to identify imbalances and treat them accordingly.