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.

I so feel for you as I have had over 30 years of similar issues which I believe are a result of high stress on my body causing gut dysbiosis. However I was introduced to Chuckling Goat website and have been taking their Kefir and other products for 2 years now. It took nearly 12 months for me to notice a difference and at the start I could only take a tablespoon a day but now 2 years on my digestive system is better than I could have dreamed of. I also took a food allergy test which came up with some interesting results I would never of found with an elimination diet.

You should at least me getting some post-op so a phone call etc with your consultant. Going through the secretary isn't appropriate because you won't be on hospital lists, and so they have to prioritise though with actual triage referrals you likely are discharged, aside from the surgery. I'd ask the secretary etc if it would help to do a referral again from your GP after, 6ish months after to maybe ask about recommendations for meds, they usually are happy to do a letter/phone call back to the GP.

Slynd is always worth a try, you can always discuss the pros and cons with your GP and they should be able to prescribe. Sometimes different mechanisms, etc work better for certain people. There are good creams if there is lots of pain with the movements, if you get that, like barrier creams.

Does your gastrology consultant have a particular sub-specialism? She'll be qualified in everything but some people decide to generalise within their speciality and others sub-specialise. If she hasn't you could ask about being passed over to someone more specialised in IBS? You could also see about getting a 2nd opinion.

I would recommend a dietician over a nutritionist as dieticians have to do training, etc, are regulated, the same is not true for nutritionists who can range in their knowledge and aren't regulated. Anyone can essentially use the term of a nutritionist, u like dieticians.

Hi OP. My gut issues were not as bad as yours but I had awful episodes of loose stools with fainting for years, particularly after eating cheese, and it stopped when I started on HRT.

Op have you tried Sodium butyrate? My dietary therapist has recommended it to me for bloating. Realise you have probably tried everything by this stage…

https://w-wellness.co.uk/products/bodybio-sodium-butyrate

Op I have read the whole thread.
I really feel for you. You have really tried so many things. A major issue with western medicine is that it sees medical issues in isolation. But bodies and especially female bodies are whole systems all interconnected.

have you been to see a British medical herbalist? They have a degree and know so much. I feel if you gave your history to one that they might have a new perspective to give you?

Hello, just wanted to give my sympathy, something struck me when I read your symptoms- and I wonder do you also have heavy periods and fibroids? If so these things are connected and have you looked into traditional chinese medicine? It would suggest you need to support the liver more. If all else has failed and youve not already tried it, it could be worth a shot?

Hi

i pretty much had some of the same issues as you and it turned out I had a severe vitamin D deficiency! I got tested after a Dr who looks at your skeleton did the test. Within 3 months I was fine. I was given Vitamin D ampoules.

I can't see how a GP referral would help at this moment in time tbh. I've been under the same gynae department for 11 continuous years, they have dealt with all of my issues, the last gynae referral via a GP was a good 15 years or so ago. If my GP were to re-refer me now surely I would simply end up at the bottom of the waiting list?

I will ask my GP about the possibility of pain relief creams etc, thanks.

My gastro specialises in neuro-endocrine tumours, she treated my MIL before she died from the disease. I saw her privately at first and from there on I was transferred over to her NHS waiting list and have been her patient ever since. I have looked on my hospitals website, none of their gastroenterologists have a specialist interest in IBS or functional disorders of the gut unfortunately.

I have seen 4 dietitians over the years. 2 NHS (2 year wait time see one in our area unless urgent,) and two private. All have been registered dietitians. None were able to help me. I'm on carers allowance now and have no funds to see anyone privately.

I have spent a small fortune consulting with everyone and anyone I can possibly think of over the years but I am feeling worse not better. It is beyond frustrating.

I have never heard of it, thank you. I will go check it out.

If you think it might be gluten, give gluten free life a go. It really isn't that bad. M&S gf bread is really nice, also the Promise brand. Yes it's very expensive, but worth it if you're having all these issues. GF pasta is absolutely fine.

I had a lot of awful symptoms that resolved overnight when I cut out wheat.

Have you had complete allergy testing? (Sorry couldn't take in all the info in op).

I totally agree and this is the thing that really frustrates me. So many times I have taken a list of all of my overall symptoms (longer than I have listed on my OP) and I am told they have a one appointment, one issue policy which is understandable but for me as a patient it is so disheartening because I am convinced many of my symptoms are inter-connected. I have changed GP surgeries this week and hope I may get somewhere with the new one.

I am also booked in to see the owner of a local wellbeing clinic next week. At the moment I can only afford the initial consultation but I am hoping she may guide me where to take this next. The clinic has a private GP, offers blood tests, full health checks, health scans etc. I live in hope they may be able to guide me towards something. I am getting desperate tbh.

I struggled with very heavy periods for decades which became worse in my 30's. A thickened uterine lining and uterine polyps was discovered and over a period of 6 years or so I had several hysteroscopies to remove them and even during day surgery but they always grew back. Eventually it was discovered that I had very low ferritin levels as a result of the heavy bleeding so my gynae ordered infusions and I had a uterine ablation which was a huge mistake. No fibroids were ever detected.

My latest bloods show vitamin d at 60 which I am told is normal.

OP I could have written your post myself many years ago, including the observations about hormonal involvement. I sorted it eventually with homeopathy (don’t self prescribe, go to experienced homeopath and give it two years but you should notice changes quickly), combined with being careful re eating habits. DM me if you would like.

I haven't read the whole thread but your issues might be linked to histamine intolerance. I have it and its a nightmare. Google mcas and histamine intolerance. You might benefit from a low histamine diet- look up the sigh list. Good luck!

Gut issues entirely resolved for me after years of symptoms similar to what you describe by tackling my childhood trauma and a regular meditation practice.

I also spent a couple of years or so around the same time on a strict Mediterranean-style diet, cut out dairy and sugar and UPF, only reintroduced dairy and sugar grsdually. This was needed to balance my gut microbiome. Now I can eat anything anytime in moderation without symptoms.

I needed a full mind body reset basically.

I wonder how many of us with digestive issues also have issues with our reproductive system? I also think it’s likely to be related. Period problems at a younger age, hyper stimulation during three bouts of IVF, miscarriage, scarring so bad that they couldn’t get a camera up me during hysteroscopy and had to abandon it. I also have a thickened lining. I do have HRT patches.

Along with the dodgy reproductive system I also have a dodgy digestive system. From reflux (burning pain, sickness and hiccups) to bloated, painful stomach to terrible agony in my bowels. In fact, I was in a lot of pain last night as I had a double dose of migraine and pain in my bowels.

I really do feel my hormones are the fire which keeps all this burning and stressful times, certain foods etc are the gasoline which makes it all so much worse.

My hormones have never been stable. Horrendous periods since the age of 12, ovulation so painful that I'd bleed and it would hurt to sit down, 6 years of infertility, hormonal migraines.......

I really feel for you, you sound so similar to me, it's really no fun being female at times, is it?

I am really hoping this wellbeing clinic I'm seeing next week will help me with this, I live in hope.

I have had several people suggest this. I have a consultation with a wellbeing clinic next week and will mention it to them.

I meant after your hysterectomy and a while after 6+ months, as yes a referral now may push you to the bottom of the list, but since you said you can't get appointments anymore (which seems strange, as you should at least have 1 post-op). Then perhaps if they do fully discharge you, you could look into it.

Also on the gastro, you wouldn't have to be referred to the hospital you are at now. There's the right to choose thing with referrals so hospitals nearish to you (tbh you can get quite a range, it's not always the closest one). I personally think this is nice as you can look at the hospital, if they are a tricery centre for anything, have a look at the consultants etc. You could ask the gastro team about that rather than a discharge, I think if her reason is she's not sure what else, then you could say that, that's good reason to allow you to see someone else. It's not like they've resolved the issues and gotten a stable plan for GP to manage, so it's worth a shot.

Hopefully your new GP is good as well, perhaps do a double appointment? I've found asking reception about anyone who has a special interest in x or just more knowledge can help, also if your pratice do online forms that's a good way to include a lot and then it makes the consultation easier as you don't need the inital explanation. Also they know all the symptoms so can prioritise what they need to for that appointment, and if you need another then they'll tell you.

Sorry havent even read all your posts but some things worth trying if you have not already done so

AFP Peptizyde 90 Capsules from Mandis Mart or elsewhere

Optibac prebiotic gummies

Inulin

Thank you, I will look into those.

despite what your doctor said, adenomyosis can affect the gut because it leads to inflammation and internal bleeding. This would have become reduced during pregnancy etc. I’ve found that taking prucalopride can help a bit (it’s counterintuitive as it’s a prokinetic laxative) but I think it makes it easier for gut contents to pass by an inflamed and stiff uterus. Please join adenomyosis advice association on Facebook and you’ll see the high link between adenomyosis and gut issues that resolve with hysterectomy. Gynaecologists unfortunately haven’t really driven research and understanding in this area and this leads to huge problems for women.

How do you feel when you are away on holiday? Do symptoms improve?