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.

So annoying, I've never once been offered this medication. I've just changed GP surgeries so will make an appointment and ask.

Bloody hell. You sound like my twin. Sorry you struggle too 😕

I do. Despite suffering from gynae issues since my 20's and being under the same gynae department since 2011 it wasn't picked up until 2 years ago when I asked for a MRI. It shows adenomyosis too. I'm awaiting a hysterectomy when he will also excise the endo.

I'm under a endo specialist now but he refuses to believe my gut issues are related. Won't even discuss the possibility.

Good luck, hope all goes well for you.

I really feel for you, I can't tell you the amount of times I've sat somewhere holding the gas in, it's agony. There's no way I'd let it out, can't trust my farts these days, I get the mucus too 😳

This all sounds so familiar, especially the peanut butter poops. Mine are the same colour as peanut butter too - orangey yelllow. I often have right sided grippy pains - I’ve had my gallbladder scanned and it’s clear apparently. Wonder if I ought to ask for a HIDA scan

Second to kefir (I am making my own from kefir grains).
My guts are better than 1 year ago but still lots to improve.

Also from about a month I have included chia seed water first thing in the morning (1table spoon of chia seeds in a warm water, soaked overnight) and flax seed before bed (1 table spoon of milled flax seeds in warm water soaked for half hour) followed by glass of water.
It seems that my poop is more solid, and I can hold it without the accidents.

My mum has many gut issues, some due to some emergency surgery which ended with removing a portion of her bowel, but the dietician she saw really rated Symprove and my mum has so far felt the benefits of it.

I tried psyllium husk as recommended by my dietitian but it made my stomach gurgle horrendously for days.

Thank you. I will look into this. My endo specialist is going to excise all the endo he sees during my hysterectomy. I sadly can't ask for a second opinion as he's one of the top endo specialists in my area, it's a BSGE centre. The nearest one to me is miles away sadly.

I just hope he gets it all away during the hysterectomy (which I'm dreading and us adding to my stress tbh)

Your non gut symptoms all sound like Histamine intolerance symptoms to me (but could be lots of other things too).
https://www.toxaprevent.co.uk/blogs/news/ibs-and-histamine?srsltid=AfmBOorgSWs9n4KZpgKn3pcAh7ehQw9sCNop7dKuYjPeZEHivl8TvcX2
Article just for info, but the (very expensive) product has helped me a lot

Mine are that colour too 😔

@Roselilysnowdrop

i don’t think I have any practice advice so to speak but I would enquire with your GP if they can refer you to another gastroenterologist for a second opinion because your first has written you off completely.

and I would make a complaint about the health anxiety label. How absolutely fucking disgracefully rude. Remind her that her person centred care has woefully been inadequate.

I need to try chia seeds but I'm scared they will be too high fibre for me. I suppose I should start low and slow.

My DH drinks gallons of kefir, he's swears by it. I need to find a dairy free one that works for me.

Thank you. I'll look into that.

Thank you. Tbh, it really does upset me that she has written that on my follow up letters and I am going to raise it with her the next time I actually see her.

I’m so sorry you’re facing this. My mum has gone through similar. Her diet (like a few others have mentioned) is basically grilled fish (no butter, no sauces, no flour, herbs like parsley are fine as is lemon and salt) or turkey or fresh prawns, with steamed or roasted vegetables (broccoli, green beans, potatoes, pumpkin, carrots); breakfast of rice cakes/quinoa cakes with avocado, tomato, lemon juice; snacks are almonds or walnuts or a piece of fruit. Brown rice is fine. About once a week she’ll treat herself to grainy sourdough bread, without butter, but it does upset her stomach (particularly so if she exercises). She will have a cheat meal (like going out for a Thai meal - stir fry, not curry, or Lebanese - tabouli and falafels) but this is once a month.

It’s limiting, but on a day to day basis she feels good (like your 3 days a month). But it really depends whether you have the energy to be so limited and restrictive when you’re probably exhausting lots of your bandwidth on being a carer.

Ah, this sounds positive even if he doesn't think it's linked. Presumably even if he sees it on the bowel he will remove that too and then if the symptoms are relieved then that's your confirmation. I think it can still cause digestive problems even if it isn't directly on the bowel. I suppose you'd only really need a second opinion if he wasn't going to remove it if that makes sense? I am really hopeful for you that this could be the answer and that you may be much better after it is removed! How long will you have to wait?

OP,
I haven't seen in the shops water kefir but I know people are making it using water kefir grains (obviously naturally diary free)

I have a lot of similar issues to you - Endo, migraines, gastric issues (I do have a hiatus hernia), post-nasal drip. Couldn’t tolerate the Mirena (sent me batty!). Most tests are normal - colonoscopy, bloods generally okay. I’ve tried all sorts. I did low FODMAP, which helped but I found very restrictive (I seemed to react to everything I reintroduced). I’m strictly gluten free (not coeliac though) and I switched to lactose free milk, which helps with post-nasal drip and improves the digestive issues.
Best I’ve ever been was when I went UPF-free for lent. I read Ultra-processed people by Chris Van Tulleken and it was an eye opener. Not only did I feel better in myself with my digestive health, I also didn’t have a migraine the whole time either! I must get back on it (it’s too easy to grab processed food!).
One thing about Endo it doesn’t sound like anyone has told you. The amount is nor
always proportional to the pain experienced. You can have lots of endo and minimal pain. Equally you can have a tiny amount and loads of pain. I had sudden onset abdo pain. Admitted with suspected appendicitis but I didn’t get worse so they decided it wasn't and I was set home with painkilllers. I was in agony. I couldn’t work. I couldn’t sleep. I could barely do tasks like hang out the washing. Gastroscopy - normal. CT scan - nothing. Ultrasound - nothing. I pushed for a gynae referral on the basis of ‘What else could it be?’. Gynae consultant agreed to do a laparoscopy. They found a tiny bit of endo on the opposite side to the pain, which they zapped. After surgery, I was post-op sore from the incisions but within a week, the pain started to ease. A tiny patch of endo = severe pain for me. I still have painful periods (suspect adenomyosis too) but I can manage. I hope the surgery helps.

I really do need to strip right down to the basics like your mum has. I'd love to live every day like the 3 good days, I literally feel like a different person.

I need to spend Sundays batch cooking so won't resort to grabbing a slice of bread when I come home from my parents exhausted and starving.

I could have written your post a few months ago. I have suffered with all your symptoms for ages including the weird stool consistency, sore tongue and gnawing pain. Never really got on top of it. Mirena made things a lot worse, mounjaro definitely didn't help me. Lots of tests, nothing found other than a bit of diverticular disease in the last colonoscopy.

In August out of the blue I had a bowel obstruction and had some of my small intestine removed as an emergency. Bizarrely, since then things have been somewhat better. I have no answers but there was obviously something going on in my small intestine.

Also I had acupuncture previously and it helped. Might be worth seeing if you a community acupuncture centre anywhere near you. The nearest one to me charges £20

Thank you.

He has said that although he is fairly certain it's not on my bowel, if he finds it during the op I will have to come back at a later date with a colorectal surgeon on standby!

I've been on the waiting list since the summer, he says his waiting list is approx 12 months. That gives me time to sort out my anxiety over the surgery, I'm petrified tbh.

I haven’t read the full thread but have you tried symprove?
it made a massive difference to my ibs symptoms for a really long time, until I ran out, had a break and the symptoms came back.
im back on it now but it took a while to reset again.
its worth a try, i get awful cramping when i wake up like you described and other grim symptoms, i wouldnt be without symprove now and you can always find some sort of money off deal

I've very recently purchased Ultra-processed people, after reading about it on here. I must start on it. I need to strip my diet right back to natural and basic. I think because I've removed so many staple foods over the years I ended up replacing them with the alternatives which are not ideal (Gluten free, dairy free etc).

I'm really hoping once my endo is removed (and my uterus) things may improve 🤞

Oh OP this sounds so miserable. I wonder if it would be worth seeing a neurologist - my daughter has cyclical vomiting syndrome, which although poorly understood, is known to be linked to migraine. It wouldn't surprise me at all if other gastrointestinal problems have a neurological connection. Best of luck with finding a way forward ❤️