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?

Your gut health is extremely closely linked to your mental health, so it may well be that you're stuck in a positive feedback loop right now. I would think about stopping focusing on your gut, eat good food and drink plenty and put your energy into your stress levels instead and see if that helps.

That sounds horrendous, I am not surprised you’ve had enough. Have you done a stool test for gut bacteria? Have any of your consultants talked about SIBO?

Have they tested for giardiasis and campylobacter?

Since you said anything, I wonder if your microbiome might need some resetting? What about trying a fecal transplant? I think they are showing promise.

Not all probiotics are created equal. Try optibac and/or Houston enzymes.

I had bad stomach problems for years, turned out I was wheat-intolerant, but even after giving that up my digestion was always poor until I figured out I was missing a decent array of probiotic strands in my gut (I know you've already mentioned probiotics).

I tried drinking Kombucha (no dairy in it) and it helped, after a little while I sensed the probiotic I had been taking for a while wasn't needed any more, so I dropped that away. This is the one I take and the only one officially studied and confirmed to be 'good' - i.e. with all the different probiotic strands in that you need for gut health.

www.amazon.co.uk/dp/B0BPSMLV98?ref=nb_sb_ss_w_as-reorder_k0_1_7&amp=&crid=13I5K7T51HIAU&sprefix=remedy%2B&th=1

Also, what made a massive difference to me (equal to the Kombucha) was taking Milk Thistle - it helps your liver digest food, something to do with bile production in your body (I don't fully understand it, but unless you produce a good level of bile naturally, you can't digest food properly) and now my stomach is much, much better. I have the occasional off day if I'm ill or run down but now I usually go once or twice a day, occasionally 3 times, but normally and not my previous diarrhoea-type movements (too much information, but there you go).

This is the brand I take - their supplements are pure with no added crap in them - https://www.british-supplements.net/products/clean-genuine-milk-thistle-extract-8-775mg-280mg-silymarin?currency=GBP&variant=&stkn=c7b690bf9e3d&tw_source=google&tw_adid=&utm_source=google&utm_medium=paid&utm_campaign=20513973024&utm_content=&utm_term=&gadid=&gad_source=1&gclid=CjwKCAiA2JG9BhAuEiwAH_zf3scoUrANJ7_CSgoX5FwnLobOY64bqWkQI4gJljsh7v7iToFyoRkSxhoCN74QAvD_BwE

ChocolateMagnum I hate the whole stress cycle thing tbh as I don't know how to break it. I am a naturally stressy and anxious person, I won't lie but I am under extra pressure atm as my mum has Alzheimer's and I help my dad during the week. I have a lot of pent up frustrations regarding this, so many emotions. Sadness and grief watching my poor mum struggle with so many health issues and knowing this is slowly killing her (she also has breast cancer and osteoporosis) but I also feel frustration and, if I am honest, anger that my poor dad, whilst struggling puts a lot of pressure on me to help out. I have had lots of cbt but sadly the NHS can offer only so much and I don't have money to pay for private therapy. I know this is probably contributing to my current situation but I genuinely feel there is currently no way out apart from running away, which is becoming a daily dream tbh and I would seriously do this is it weren't for my dh and teen dc.

TheGirlattheBack I tested positive for hydrogen SIBO two years ago but my gastro has advised me not to concentrate on this as the research is sketchy and she admitted last week they don't really know how to treat it successfully. I can't afford the treatment privately as it is £200 for a two week supply of Rifaximin (and I would need to pay for a private consultation on top of this).

endofthelinefinally One of the stool tests I had two weeks ago was an Enteric MC&S test which covers all of those.

farmlife I did ask my gastro about this last week but she says it's only really available on the NHS for c diff patients. It's around £2k privately, the results are hit and miss apparently.

anyolddinosaur thanks, I will definitely give it a go.

Brilliant, thank you.

I will try those and I do have some milk thistle tablets in the cupboard which I had purchased for my dh but he has never taken them. I will dig those out. If they don't help I will get the ones you've recommended.

Similar to you, but turns out I had two issues going on - Fibroids, that pressed on everything in the general area and I am Salicylate Intolerant! Maybe have a look at the intolerance, as it really does cause many of the issues you mentioned and is far more common than is known. It was picked up for me as I had an Aspirin allergy and was referred to an Consultant that specialised in allergies.

jamestiger150 Is kombucha good for nausea too?

I have suffered with endless gynae issues. I don't have fibroids but had recurring uterine polyps, my uterus tilts very far back towards my rectal area which I am certain causes some issues and a year ago it was found via MRI that I have adenomyosis and endometriosis. My endo gynae won't even discuss my gut issues, he says they are of no concern to him and not related to my gynae issues! He says it's highly unlikely that my endo is on my bowel as it doesn't show on my MRI results (does say 'deep' endo though and I have a nodule in the pouch of douglas) but he was very dismissive when I tried to bring up the subject of my gut issues. I am currently on a long NHS waiting list for a laparoscopy.

I will look into the Salicylate intolerance, thank you.

Crikey, just googled, I have many of those symptoms.

I recently read that antidepressants can help IBS. It’s to do with gut motility I believe.

One of my DC has many of the symptoms you describe. Someone recommended Aloe Vera Juice and peppermint oil tablets - absolute game changers

I stopped drinking tap water last summer which I think has helped me. I didn't have exactly the same symptoms as you but I was in daily pain before that. I can't really eat too much in the evenings otherwise I'm in pain again the next day but apart from that things are fairly good (gluten free diet, not too many carbs, avoid a few other things like lentils)
I was going to suggest something like Biomel powder if you can't tolerate dairy, or Kombucha. But if you're thinking you might have an undiscovered intolerance you could try eating just chicken and rice for a few days and then introducing other foods one at a time.

Imgoingtobefree I am thinking of asking for Amitriptyline as it is supposed to be helpful for IBS-d, I just hope it doesn't cause too many side effects.

What are you eating/drinking on a daily basis? And how many supplements/drugs are you taking daily? I wonder if you're just eating too much of the wrong thing and, perhaps, taking too many supplements/drugs?

I, too, was diagnosed with IBS in my late 20s (now 65), and control it - mostly - with a low carb diet. Stress, as well as diet, is a huge trigger - and it sounds like you are under a lot of stress, as well as admitting that you are an anxious person, generally.

Have you considered taking anti-anxiety medication?

I have had gut issues for years and recently started having collagen powder daily and one of the unforeseen benefits has been a regulation of my gut system. It’s really been amazing and I won’t stop taking it now for fear of it returning to the old situation

I was going to suggest amitriptyline, but then read about your mum's alzheimers, there are apparently links with amitriptyline use, but you would need to discuss that with a doctor. Amitriptyline did help with my IBS-d however I also got diagnosed with bile acid malabsorption and put on colestyramine powder a few months later. I really feel for you, I have also had gut problems since I was about 7 and it has ruined so much of my life. I hope you can get something sorted x

Yes, good for everything

I would probably look into some alternative holistic medicine at this point. I went to a naturopath when I had long covid, I also had coeliac, and she was very knowledgable about gut issues. I appreciate it’s not for everyone but it sounds like you need a holistic approach looking at the whole body and mind, not the individual body systems in isolation.

I have endo and IbS.

A laparoscopy helped massively as they burnt away a lot of deposits on my bowel.

(They thought prior to the lap I didn't have endo at all so I would ignore your doctor, the only real way to tell is to operate).

What you could consider is cutting back to a very very very basic diet and then slowly adding in everything else.

This isn't about fodmap it's about reducing the load on your system. Consider drinks such as complan which are meal replacements for people who are ill (Not diet versions).

I took amytriptyline for a number of years for other reasons and it did help my ibs.

I eat a very basic diet and tbh I am getting to the point where I feel I could eat only dust and still have issues.

My diet consists of mainly turkey, fish (cod, haddock and salmon) and beef a couple of times a month in the form of mince. Carbs come mainly from potatoes and very occasionally sweet potatoes, sometimes rice but that seems to upset me these days. Veg such as carrots, green beans, cucumber, radish- tbh I eat low amounts of veg as they trigger me, same with fruit, I barely eat fruit. I make my own gf flatbreads a few times a month. I eat rice cakes at lunch time (I know they are not great). I have to be so very careful with my fibre intake. I can not tolerate chicken or eggs which is a weird family thing as my dad and his mum had the same issue. Dairy goes through me but strangely I could eat copious amounts of dairy when I was pregnant with my son 20 years ago, I had been diagnosed 7 years before that and up till then had really suffered but was symptom free for over a year. But had a terrible time when pregnant with my dd 2 years later. Makes zero sense. I have kept a food and symptom diary for years but can never really see much of a connection with food and symptoms. I can eat a particular food/meal one week and be ok, eat it a week later and have major issues.

I don't really take supplements as they can upset me. I do take vitamin d but have breaks and still have issues when I don't take it.

I do accept that I am very stressed due to my mother being so poorly but it is such a vicious cycle because the more I have symptoms the more I stress something is very wrong or stress about going out with a dodgy gut, urgh!

I have tried Sertaline and Citalopram but they exacerbated the issue. I have been offered Nortriptyline but am concerned about the reported dementia risk as mum has Alzheimer's but I am reaching a point where I am very much considering it because I have no life right now.

That's interesting, can I ask which one you take?