Please, can anyone give me any ideas how I can re-set my digestive system - I am so miserable.

[Roselilysnowdrop]

Sorry this is so long but I wanted to list everything and not miss anything out in the hope someone may be able to advise or help me in any way(I am really getting desperate).

I feel the NHS have given up on me yet I feel worse now than ever before and I don't know what else I can do to help myself and wonder if anyone has been in this position and have managed to some how 're-set' their unruly digestive system?

I first developed gut issues almost 30 years ago. I was 25 and going through a stressful time. Out of the blue one day I soiled myself at work, no warning signs, nothing. I was mortified, this had never happened to me before. From that day in 1998 my digestive system has never been the same. GP simply said it was IBS and that was that.

The first 6 years were awful, I tried everything I could and spent a small fortune on alternative things but little helped. Then I fell pregnant and was symptom free for a full year, I was even able to consume dairy which is something I really struggle with. I do believe hormones and stress play a very large part in my gut issues history.

My 30's were up and down with some really bad and some really good days. I found that stress and certain foods were big triggers. In my late 30's a dietitian introduced me to the low fodmap diet which helped, somewhat. During this time I could enjoy a lot of foods.

However, when I got to the age of 45 it all went crazy. Admittedly, a lot of stress hit at this time - 5 years of daily school refusal from my ds (he's a lot better now hes an adult), MIL terminally ill, my own dm was diagnosed with Alzheimer's and my own perimenopause journey began (hormones and I do not mix well). Over these last 7 years my digestive issues have gone into overdrive and each year things are getting worse, there are only around 3 days a month where I actually feel 'normal' within my digestive system (those days are bliss but I keep a food and symptom dairy and have no idea what causes the issues).

I struggle with the following symptoms:-

Need to use the loo as soon as I wake in the morning and am often woken around 4am with gurgling guts - often need the loo several times in the AM and up until 12-1pm my guts are very unsettled

TMI (I promise I am not a poo troll) stool often has a consistency of peanut butter/wet mud - weirdly hard to push out even though it's super soft and requires LOTS of wiping. I sometimes can have 'normal' stool or even hard/constipated type it can swop and change yet I never change my diet that much so no idea why this occurs

Nausea and a gnawing acidic pain/discomfort (nausea often mid cycle and for 10 days or so)

Reflux and burping

An irritating cough to clear phlegm at the back of my throat

Post-nasal drip after eating

I often have a sore tongue

Tinnitus and a full feeling in ear (this has all been checked with an MRI)

I FEEL THE ABOVE 6 THINGS ARE ALL CONNECTED

Bloating (stomach bloats between 3-6pm regardless of when or what I have eaten)

Farting excessively some evenings yet other times nothing (can not see from food dairy why this occurs)

Excessive gurgling

This year in particular my gastro-colic reflex has become super activated and I often need or feel like I need to use the loo after eating - this makes eating out a nightmare

Pains in stomach after eating (sometimes/sometimes not yet no idea why)

In general an overall feeling of malaise within the whole of my digestive system which never feels settled or calm.

Over the last 6 years I have been back and forth to see my gastroenertologist and have had various tests,

2019 - Colonoscopy along with a gastroscope - gastroscope included biopsies for Coeliac disease, H Pylori, ulcers etc.
2023 - Another Colonoscopy this time with biopsies for microscopic colitis
2023 - A pill camera endoscopy to check my small intestine
2023 - Bile Acid Malabsorption scan - negative
2022 -Stool test for SIBO which came back positive for hydrogen SIBO however, my gastroenterologist (and 2 dietitians) are not convinced of this as they say the tests are unreliable however, I tried Rifaximin anyhow but it has not helped, in fact I feel worse

Private (and very expensive) stool test in 2022 came back with gut dysbiosis - don't think I needed to spend £450 to be told that tbh!

I have tried all of the recommended IBS medication and very few help long term. I have also tried various anti-depressants which made the loose stool and nausea worse and TCA's made me feel like a zombie.
PPI's give me a worsening of diarrhoea.
Imodium helps sometimes and I often feel great the day after taking it but more often than not it just slows down the super soft stool making it even harder to pass and eventually causing more issues (I only take half a tablet at a time). Mebeverine gives me blinding headaches. Buscopan does nothing. Colpermin helps somewhat so that is about the only med I take now.

My gastro tells me she no longer knows what to offer and puts 'Health Anxiety' at the top of all my follow up letters - I really do not have health anxiety, I am simply tired and worn down from having to put up with daily uncomfortable and embarrassing digestive issues, how can that not cause some degree of anxiety? Also I have never been diagnosed with health anxiety by any other health professional so it irks me she has come to this conclusion and seems satisfied with that diagnosis to my physical issues. Who the heck would put themselves through all of the above tests for the fun of it? - Tubes stuck down your throat and up your bum are far from fun.

I really don't know what I can do anymore to help myself, I have come to a dead end. I have spent a small fortune over the years trying to feel better, but to no avail.

Sorry to continue with the long list of things and hats off to you if you are still here but these are the things I have tried and am still trying.

Low fodmap diet - I have gone through this diet with several state registered dietitians over many years that I now know the diet well. I am still mainly low fodmap and eating the foods I know I am ok with and avoiding the ones I absolutely know are not great for me which include, dairy, certain fruits and veg, eggs & chicken (this has only been the last 4 years and runs in the family for some reason), coffee, sugar, high fat foods, fibre (all kinds of fibre give me diarrhoea), beef, beans and legumes, any artificial sweeteners (I only drink water). I have a love/hate relationship with wheat/gluten - I love bread, it's the food of the gods imo but I don't think my body likes it - I once went a full year without it but craved it every single day. I have tried eating just sourdough bread but I think it upsets me as well and I can not stand any GF breads, they are all horrible. This week I have added wheat/gluten to my list of no-go foods in the hope that I may see some improvement (although the thought of no bread is miserable).

I have tried various probiotics but they either do nothing or make me feel worse, the same with digestive enzymes. Aloe vera although my gastro told me not to consume this as it can turn the colon black!

I exercise every day, have spent a fortune on gut directed hypnotherapy both face to face and apps/downloads (currently back on it), I listen to the Calm app every night, I practise yoga, try to get to bed at a decent hour although my sleep is often disturbed now in peri (I can't take HRT) and I try to live as gentle and easy going life as possible which is hard as I help care for my elderly mum who is now in the advancing stages of her Alzheimer's that in itself is enough stress for a lifetime.

I have not worked for the last year due to my issues but I need to return to work. I need to earn money but I need to feel well in order to return to work, it's a horrible vicious cycle. I have booked an appointment with a local wellbeing clinic (recommended to me by a NHS GP) in the hope they will be able to help but I am nervous about spending money on this as I have wasted so much with various private specialists and alternative health practitioners and am still in this position but I no longer know what to do. It's a truly miserable way to live, ruled by your gut.

Anyhoo, if you have reached the end, thank you and if you are able to suggest something, anything that I may not have thought of I would be so grateful.

How strange, like you say, something must have been going on in your small bowel. Our digestive systems are so complicated aren't they?

I will have a look and see if we have a local community acupuncture centre.

Okay - that's good that there is a plan. I totally understand, I feel similarly and have never had GA before so the unknown is difficult. The way I have managed some of the anxiety is by doing some things that are within my control to help, for example losing weight and doing as much movement as my pain permits. I also try to not think about the whole situation or it gets a bit overwhelming, I take it a day at a time or a section at a time. For example, I am just trying to focus on the pre-op assessment first. Maybe practise some breathing exercises and whilst you're doing it have some affirmations to repeat that soothe your anxiety. For example 'I trust my surgeon' - 'I trust the process' - 'this will help me to get better' - or whatever works for you. The more you practise regulating the easier it will get and then you can use it as the procedure draws closer and on the day.

Quite a few people have suggested Symprove. I did try it when it first came out and found it made me much worse but it may be that I didn't give it enough time as it was a short trial from my dietitian. Perhaps I need to try again.

Sorry, the app I use is Yuka. It isn't foolproof by any means and it focuses on the nutritional content of food, not specifically on how processed they are, but I find it helpful.

I wouldn't say my symptoms specifically related to peri menopause. For me, things got worse when I went back to work after a long period of not working. Eventually I retired and, after about 6 months, things settled down to a more manageable level. But I really do think my IBS is stressed induced more than anything. You may find yours is helped by going through the menopause.

Oh your poor dd, that must be miserable.

I hadn't given a neurological connection a thought. I'll look into that, thanks.

Endo surgery may well help. I had IBS-like symptoms for a couple of years during an intensely stressful period in my life (infertility being the big one). A laparoscopy that concluded with a diagnosis of endometriosis and two hours of lasering crap off my insides made a massive difference. Whether that was because of the reduced stress because we finally had a reason behind the infertility, or because of the physical removal of endo, who knows. Maybe both.

I think it did make me worse to start but I halved the dose for a while. I wouldn’t want to tell you to try something that will make you feel worse than you already do though!
I have tried different probiotics and felt really crappy on them so i understand, if it is something like that you need to find the right combo I guess.
good luck

It's the GA I'm most frightened off. I can put up with the actual procedures, like you say it's the fear of the unknown. I've had all my gastroscopes, endoscopies, 6 hysteroscopies, uterine polyp removals in surgery and uterine ablation all without anesthetic simply due to my fear of them. I'm my own worst enemy lol.

I'll make a note of your strategies, thank you.

Hope all goes well for you.

OP I have had nearly all your symptoms and I got so fed up too!

If it’s not been suggested I did an allergy test and found out I was allergic to wheat and shellfish. I cut out wheat and it’s made so much difference.

I just did a private blood test, make sure they are testing IGE with a blood sample

Homeopathy??

Thank you, I appreciate that. Totally get that - I am autistic and the idea of being completely out of control really stresses me out too. You've got this, I genuinely think you have a real chance of relief/answers after this surgery so try to keep your focus on that if you can. Perhaps consider pushing for a HIDA scan in the meantime to check gallbladder function as the type of stool you describe and pain could suggest it's worth checking.

I was thinking on your tinnitus pain and ear irritation too. Not sure if it's worth mentioning, but all of the stress from the pain and issues this year caused me to start clenching my jaw when I sleep. Which can cause similar issues (including tongue pain from the pressure) plus headaches and eye pain. I was diagnosed with TMJD as a result. Wearing a mouth guard at night has really helped and I think Nortriptyline helped me too (this can also help with gut issues). Might not be relevant, but I really feel for you and would like to share anything that might help.

Like another poster, I had similar and was dismissed as health anxiety. Had smallish polyps which were later found to be cancerous, a resection, and now the pain has gone. Re introducing food after being low fodmap for months, now just have dairy allergy 🤞

I'm sorry you are suffering so much. I have similar symptoms to you and my diagnoses are biliary tree related, I have Sphincter of Oddi Dysfunction and Acute Pancreatitis. I also have Bile Acid Malabsorption (I'm aware you don't have this). It might be worth exploring your biliary tree?

It sounds horrendous OP, I really feel for you.

I know you aren’t able to take kefir as it’s dairy but have you tried other fermented foods such as kimchi? Loving Foods sell on Amazon and are great. It might help with increasing different strains of bacteria in your gut.

There’s also a supplement called Alflorex which has a specific bacterial strain which is known to help those suffering with IBS. I take it as the study showed there was a link to improved psoriasis.

I hope you find something that works for you soon.

Have you had a gastric emptying study? I have gastroparesis and I recognise a lot of your symptoms. De-lurked to ask this as I don’t think anyone else has suggested!

OP, can't help with your gut issues (mine are the other way around!) but if you wish to try the Mirena but can't, I'd highly suggest trying the Depo injection. I also have endo and haven't had a single breakthrough for the year and a half I've been on them (plus, if you don't adjust, no surgery needed, just wait!). And with the hormonal link, I hope your gut issues improve once you're menopausal.

I'll look into that, thank you.

I'm very similar to you. I have ADHD and it certainly does not help with my overthinking.

I also have TMJ disorder and bruxism. I've bitten through 5 mouth guards in the past 😳

I have tried Nortriptyline and Amitriptyline over the years but there is a risk of dementia with these meds and due to my mum's Alzheimer's my GP advised me not to be on it long especially now I'm getting older.

Oh thank you, I've never heard of that....off to Google.

I haven't, no. I have read quite a bit about gastric emptying. I'm quite flexible (but not in a good way, it's painful) and some time ago I went down a rabbit hole of looking into hyper mobility disorders and EDS. I'm still convinced I may have some issues (my mum has and ds has knee subluxations) but GP wasn't helpful on that front. I often believe all of my physical issues are connected somehow.

I'm hoping my appointment with the wellbeing clinic next week may shine some light on things.

Thank you, I'll ask my new GP about depot shots.

Hi sorry op this sounds awful and particularly bad they dismiss it as health anxiety… I’ve not read the full thread so apologies if this has come up, you mention tests for colitis but I’m unsure if they were negative. I have a friend whose partner works in the field of faecal transplants (great sounding job I know) but is this something your hospital could explore? https://www.guysandstthomas.nhs.uk/health-information/faecal-microbiota-transplantation-fmt

I have radiation proctitis which has very similar symptoms to IBS. I now take a prescribed 30 mg codeine phosphate daily which really calms down my bowels. Might be worth discussing this with your doctor if you haven’t tried it previously.

Thank you. I will read that later. I have been tested for colitis and Crohn's several times.

Thank you. I do occasionally take co-codamol for my gynae issues but they do constipate my quite badly if I take them for more than a few days. Not sure if that's similar to codeine phosphate?