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

[Anothershittydayinparadise]

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?

Hi OP, I read your thread a few weeks ago and meant to link this pod.

It's incredibly interesting and you might pick up something useful from it.

https://open.spotify.com/episode/4GPi4IhJ8QKjm2JHqdmCAy?si=9UWXbhBnTAu1Ei3W2cRq4w

It's episode 263 of the Food Doctor.

My family and my best friend think I am being a drama queen (none have gut issues btw) but it truly does destroy your life. I really feel for you. I spend my life living in hope I will find something which will help.

Ilovelowry Thank you, I will listen to that in a min.

My digestive system is always so much when I'm on antidepressants. It makes a huge difference. I take citalopram. When I'm not on them, I feel like my gut is static. I basically take a very long time to digest food and am in a lot of pain. Sometimes I have to not eat for several days just to clear my system (I can tolerate that as I'm a bit overweight anyway). January was awful for me. I stated ADs again 2 weeks ago and so so much better already - mentally and my digestion. Chronic issues/ pain are depressing so it's a vicious circle which spirals down. I would ask if you can try ADs. I take citalopram 20mg.

Yes treated with Rifaxmin, then healthy diet and probiotics. Had to buy their own probiotics and they saw private nutritionist afterwards to advise on diet going forward - they don’t eat anything particular extreme though, just home cooked fresh food. They’re definitely much better than they were.

They saw a Gastroenterologist at Salisbury District Hospital. Definitely NHS.

@Anothershittydayinparadise
Dear OP, so sorry you are going through this. A 30+ year sufferer of all things poo-related here.
My lovely gastroenterologist (and there were may that weren't lovely) said that IBS is a dustbin diagnosis made by lazy drs because there is always more to it. Could be physical, could be psychological and both are equally valid.
He very much advocated for me and I was diagnosed with UC. Resulted in an ileostomy (later reversed).
Although I am physically still incapacitated from time to time, I know that it's largely caused by stress which triggers an autoimmune response which targets my gut. As "woo" as it sounds, learning to breathe, taking peppermint and drinking ginger tea are day to day life savers.
I also have bile malabsorption, pernicious anaemia and a host of "understood" gut issues which are better controlled by drugs.
It's taken years to get some relief and my bowel would be unlikely to be described as "normal" by anyone, but I did do the NHS bowel cancer screening test last year and it came back as normal which was a huge relief.
N to sure if I can help much more but you are welcome to PM me because I know how "shitty" this is - all puns intended

It’s definitely worth trying a few weeks nightshade-free to see if it helps - you never know.

Psyllium is a weird one as it can act as a laxative for constipation (but more to make you go rather than by causing watery poo) but if you have the opposite problem it bulks the stool up. It also gives you pleasingly clean poos when you wipe, so there’s that 😂

Your poor thing.

I have much more mild gut issues - which leads to excessive flatulence. I've found since I started yoga that I very rarely fart now. Yoga is supposed to be good for digestion - and also good for stress levels. It might be worth a go. There are lots of free classes on youtube so you can just do it at home

Another out of the box suggestion - Chinese medicine (by proper practitioners) so herbs or acupuncture or general nutrition- I've seen a lot of benefits for people from the herbs, and quite a few from acupuncture.
I appreciate cash is not free flowing for these things but there are some student practice places via NCA - fully supervised by experienced practitioners- places at London and York and some (not acupuncture!) are online - these are much cheaper. This may be replicated across other holistic therapies if you prefer something else so maybe have a Google and see if you could afford something like that?

My IBSd has been massively helped by taking Cholestyramine ( Questran light). I think though that I was fortunate in that my doctor agreed for me to try it even though I didn't have a bile malabsorption test ( waiting list over 2 years here apparently). It's not perfect in that I still get some bad days but has made a huge improvement. I now feel that I can eat most things ,and even vegetables and some pulses again without too much danger and can even plan going out in the morning ( which I was avoiding) but I do find that I cannot tolerate much dairy fat now, so no butter cream etc without problems.. ( hard cheese and some yoghurt seems to be ok .)

I was also diagnosed with high cholesterol and It is also cholesterol lowering drug . I have had problems taking statins .

I’m so sorry to hear about your issues - I have very similar, and it’s awful. I’m very often late to things due to this but so embarrassed to say this to my friends!
I’ve tried so many things, and the only thing that makes me more ‘normal’ is to eat 100% vegan. I would definitely give this a try! When I go on holiday I relax it a bit and my issues come back straight away, then it takes about a week to resolve once I’m back 100% vegan.
It can be a bit miserable (I love cheese!) but it works for me.
I definitely recommend giving it a go!

Have you looked at Chuckling Goat website?
They offer a microbiome test (it’s a bit pricey) and give a detailed consultation of all gut bacteria. They also recommend their Kefir which is made from raw goats milk and many other teas, tinctures etc.
I did the test as I have IBS-C and found I had very high levels of a pathogen called Eggerthella which is related to inflammation in the gut and I was recommended an Apple Cider Vinegar designed specifically to target that pathogen.
i was also recommended the kefir as it has a very positive response from those who have taken it. Unfortunately for me, it was just too expensive. But, if I was in such a desperate state it might be worth a try.

Massively sympathise x

Oh gosh you have my sympathies- it sounds like you've had such a tough time and it's hard to find a solution; everyone is so different.

I had Covid and then suffered a load of digestive problems I'd never experienced before. It was horrendous.

After some research, I started a Keto diet. It was tough to adjust but I was desperate to reset my digestive system- and that's what Keto did. I was then able to move to low carb and work out what I could tolerate. But I believe Keto reduced the inflammation that Covid started.

It is a restrictive diet and I wouldn't recommend it forever (or for everyone) but I am grateful I did it.

Have you had any gynaecological tests or scans, OP? When I had symptoms like yours, particularly being painfully constipated on day 3 of my period, I was diagnosed with endometriosis. I had an endometrioma and as much as the tissue as possible removed with laparoscopy and have had no problems for nearly ten years now.

Have you tried just giving your gut a rest for several days by fasting with just low/no sodium broth? Yes, you'll be hungry but it might be a low price to pay.

Also this might sound mad but if I have digestive issues I take several large tablespoons of ordinary yellow mustard. As much as possible. (It's easy for me as I love mustard). Contrary to what one might expect it calms my intestinal system down!

OP I’m so sorry for what you’re going through. I don’t know if this will help you but you seem willing to explore everything.

I too got to the point decades ago now where I could hardly leave the house as was so worried about symptoms. The hypnotherapist taught me how to do the body scan which I did religiously twice a day and managed to keep going, All tests were negative for gut stuff it was definitely anxiety with me.

Over the years I have gradually become free of symptoms. I had a lightbulb moment in singing lessons when the teacher told me I was constantly tense in my gut area and I just constantly carried tension in my body. By becoming aware of the body mind connection more and aware of when I am tensing my body it has enabled me to consciously let it go, relax, properly and deeply abdominally breathe (as PP said this is key) and I am so relieved to have found the key.

I have had CBT free on NHS which has helped me too and I mainly eat low carb high protein and lots of veg which seems to work.

Also can you out some energy into trying to reduce stress around your caring responsibilities. Get attendance allowance sorted, carers in to do some shifts, cleaner, any support your parents can claim? Can you be paid as carer if no alternative and want that? Work out your boudaries and what you are able to do. Don’t be coerced beyond your own limitations.

Do you already do daily body scans and relaxation exercises when you do your hypno audio? i am sending you healing hopes as it’s truly horrendous and socially very difficult. Good luck and keep going.

@Anothershittydayinparadise I feel like I could have written this myself.
I have tried lifting UPF, following FODMAP, I have tried elimination diets, Kefir, Biomel (made things miles worse), but nothing has worked and I am currently trying Symprove.
As soon as I eat a small breakfast, my stomach blows up like a balloon and the toilet trouble starts.
I have no solution, but I am here to offer a handhold and wish you all the best. Hopefully ,we'll each find a solution soon x

Have you heard of Bile Acid Malabsorption?
I was diagnosed after a course of radiotherapy which damaged my bowel, I'd never heard of it, but many people suffer from it with no particular reason.
My symptoms were very similar to yours, I was diagnosed after a nuclear scan (you take a tablet and get scanned, then go back a week later for a second scan, easy as it gets, no canula needed)
I'm now on Colesevelam 625mg which I take daily and can adjust the dose as needed, i.e. if I eat something I know might upset me.
You've had lots of good advice on this thread, I hope you find something that helps, I sympathise with you, it's awful.
I'm not saying you've got BAM, just another avenue to consider.

My DH had many of the same symptoms and issues as you. He drinks kombucha every single day and his gut health has been great for years now. If he doesn't drink it when we go away it starts up again. My family has horrendous gut issues as well but I also religiously drink kombucha too and no digestive issues. It is worth giving it a try. That and fermented foods really help because of the probiotics and prebiotics.

I was diagnosed with IBS years ago I found out oh a holiday once that it was meat causing my issues. It was game changing once I stopped eating it, I do eat fish and I also find raw foods are better for me too. I do stay away from dairy foods too, only really have cheese as a treat, but very rarely.

I had 18 months of the same symptoms you describe. I had endoscopies, colonoscopies, scans, triple antibiotic therapy. Nothing worked and everything came back clear. I followed the strictest diet for a year and now I am completely normal again. I know you have probably already done this but it may be worth saying. I cut out EVERYTHING, no alcohol, gluten, meat, dairy, caffeine, sugar. I was basically eating blended vegetables (safe vegetables) as soup, avocados and nuts for almost a year (lost so much weight) but it did work.

Fellow digestive system sufferer here (though not as bad as yours- I'm so sorry!). I had a similar issue where all my tests were coming back okay but I was so ill I was having to take days off work every few weeks through the worst of it and at one point was worried about being able to keep my job. I also struggled with the same food sometimes triggering me, and other times being fine. I played with a lot of supplements, namely l-glutamine as a dissolved powder when I knew I was going through a high stress period, and I take a turmeric and liver support supplement daily to help any inflammation and support the quality of my bile. I also do a 24 fast with just a couple of mugs of chicken broth when my digestion starts slipping again and that has also helped. If you try these and nothing works, maybe ask your doctor about whether a short course of amitriptyline (3 months or so) might be worth trialling. For me it broke the pain cycle I was in and allowed me to start sleeping properly again, which of course does wonders for the rest of your wellbeing. I came off it after three months and havent needed it since (though it will likely make you gain weight). Charcoal tablets might help the diarrhea short term.

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!