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?

Thank you x

I have read the reports on the risk of anticholinergic drugs which is why I have put off trying a TCA but I am getting quite desperate tbh so am thinking if I try it at low level for no longer than 6 months or so I may be able to reset my gut function? Tbh my GP is pretty useless, she says she has not heard of the risk but there is a recognised risk, my mum's dementia consultant brought it to my attention when she was first diagnosed.

Sounds mad but when I had my SeCHAT scan I was actually hoping it may come up as positive so at least I would know what was causing this.

Sadly I just can't afford it atm being out of work but if you would be ok messaging me her details I would love to see someone like that in the future?

I really hope my lap will help with some of the issues. He has told me that if it is found on the bowel he will stop the operation and I will need to come back and have it done again with a colorectal surgeon on hand!

I don't think I could get more basic than the diet I already have tbh. I have looked into meal replacement drinks as that seems an appealing alternative right now but they all seem to be either dairy based or if vegan they are full of artificial sweeteners which kill my guts.

I do think I need to consider Amitriptyline or Nortriptyline.

Have you looked at histamine intolerance? Also sounds like your oestrogen is high and your progesterone low. I don't think the female body is well understood at all.

Would these work for you?

https://uk.yfood.com/products/drink-vegan-choco-en?utm_source=google&utm_medium=cpc&utm_campaign=|GBR|BR|Pmax|All-Products|Standard-Shopping&utm_content=BrandShopping&gad_source=1&gclid=CjwKCAiA2JG9BhAuEiwAH_zf3jw17vY4DTqP_4hbzC0KEcQTiAZhDSYHuS037VEL7nDOazJ9T0nUwhoCn4IQAvD_BwE

I lived off the non vegan version when I was ill recently and they're tasty.

I'd give amitriptyline a try - a risk in the future is worth an improvement in your life now I think.

I'm listening to my gut directed hypnotherapy at least twice a day

With the stress levels you've described listening to prerecorded messages aren't going to help - it's a like putting a plaster on a wound that needs stitches. There are hypnotists/hypnotherapists that specialise in gut related issues and most will do a free assessment so worth a try.

Apileofballyhoo
Yes, my oestrogen is definitely too high, I have suspected this for years. Worries me a little especially as my mum has an oestrogen sensitive breast cancer.

I will look into histamine intolerance.

QuestionableMouse* I'll give those a try, thanks

Eyesopenwideawake* I should have mentioned the recording is personalised. I had several months worth of gut directed hypnotherapy last year. The hypnotherapist sends a download of the recordings when the sessions come to an end.
As I say, it's lovely and relaxing but has done nothing for my gut issues sadly. I was gutted as it was very expensive. I've spent a small fortune on trying to feel better over the years. Chronic health issues are not easy on the wallet 😞

I often suffer from some of your symptoms, mostly to a lesser extent, but occasionally really badly, and someone recommended Silicolgel (the brand name) to me - Colloidal Silicic Acid (nothing to do with Salycilic Acid - I googled!) for Gastrointestinal Disorders. I bought a bottle from Boots, and when I’ve used it, it does seem to have a soothing effect on my insides! Might be worth a try?

Meant to add I hope you find something which works. It can make you feel really miserable.

Have you done the elimination diet and kept a strict diary .

I always think it best to find the cause instead of masking over it with medication

Have you had allergy tests ?

I had a horrible system when I lived with my parents but it sorted itself out when I left home .

Too much rich food and meat made me unwell

Most of the advice I was going to give has already been mentioned, but one extra thing:

have you tried psyllium husk to try to firm up your stool? A teaspoon (or half a teaspoon) mixed with water and left to stand for 10 minutes then chugged with breakfast, followed by a big glass of water usually helps. It is soluble fibre and bulks everything out so it’s easier to pass (constipation) and firmer (diarrhoea) so worth a go.

also, it may be that something you’re eating is setting it off without you realising. Low fodmap does nothing for me and some of the foods that I really cannot tolerate are included in the fodmap list - tomato, potato and peppers mainly.

I've tried it several times and a few weeks ago spent £20 on a bottle of enterosgel which only lasted just 5 days a did nothing to help. That stuff is so expensive but I would have happily continued to pay if it worked.

kaos2 I've worked with several dietitians (NHS and private) and have tried several elimination diets and adding/removing certain foods but nothing helped long term and it's definitely not helping ATM.

I did the York test which flagged up the foods I already knew upset me and had already removed from my diet. In desperation I even tried a hair analysis test which I know are rubbish. It told me I was intolerant to various foods I don't eat, lots of trees I've never encountered and canaries!

One thing I've never done is a plant based diet as I've been concerned the high fibre may upset me but I have been wondering if meat may be my issues?

I really need to try psyllium as it has been suggested by my dietitian but I've been very apprehensive as everything I read about it says it's a laxative.

I do wonder if the nightshade family may upset me? I can't tolerate tomato as it flares up my acid indigestion.

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 am furious on your behalf. You have a positive test and diagnosis of SIBO which explains all of your symptoms and your consultant dismissed you! I would complain to PALS and ask to see a different Gastroenterologist.

A family member had the same diagnosis on the nhs and was treated successfully. There is no reason for your consultants attitude other than ignorance.

When my dad had symptoms like you - they treated him for years of IBS and it turned out to be stress/anxierty.

Could you try some SSRIs? He didn't know he was anxious but the meds have controlled it now mostly

Functional medicine? Not a practitioner but a qualified doctor who also practices FM. Dr Suman Gupta is good. It is expensive but if you're desperate...

Following - some great advice on here. Thank you

@Anothershittydayinparadise do you have dairy? I would eliminate that if you do and see if that makes a difference.

I think completely plant based is worth a try to see if you can solve it tbh

One immodium tablet each night before bed?

I've had ibs-d for years. Things I tried that didn't help: nortryptyline, ssris, psyllium. (Psyllium did make things slightly more formed, but still urgent, frequent, cramping, etc.)

The only thing that helped was when I finally decided to just proactively take a low dose of immodium every day instead of waiting for the D to start and need to take a bunch to stop it. If I ever tip into C, I don't take the immodium for a day or two until it's sorted.

Will they take me seriously though? The NHS dietitian basically said the same to me as well.

Do you know how your family member was treated? Was it by taking the antibiotic Rifaxmin?

I have tried Sertraline and Citalopram but they made things worse. I need to go back to the GP and see if they can offer an alternative.

I've got IBS too - no advise to offer but I don't think you're being OTT, at my worst (about 10 years ago) it destroyed my life at that time - and actually I never really recovered from it.

Bideshi I don't have the funds atm for anything private but I will make a note of that name for future reference, thank you.

kaos2 I have been dairy free for nearly 20 years. I am very much considering going plant based, I can eat diary or eggs and I really don't enjoy eating meat so it won't be too much of an issue taste wise but I worry the fibre contents of plant based foods may be too much but nothing ventured and all that.

AmyByTheTrain Imodium was always my go-to when my IBS tipped too much towards diarrhoea but for the last 6 weeks or so it is having no impact. I always used the dual action but it just not helping, neither is the liquid version the hospital gave me some time ago. I do have some of those little turquoise IBS relief ones so might try those tonight