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.

Ah it sounds like you're having a really tough time of it. I have ADHD too but feel like the Autism is the part that makes the medical issues the hardest. The overthinking is really hard isn't it? With you there.

There are some studies and recounts out there about how people with masked ADHD and/or Autism often develop pain and issues with their body. I think having a constantly dysregulated nervous system eventually takes its toll. Also people who are neurodivergent often have been so accustom to holding discomfort and pain perhaps we become used to it and ignore the earlier warning signs. Then we have the joy of being dismissed by medical professionals due to a history of anxiety on our records.

Really wishing you the best and if you ever need want to chat feel free to send a message.

This is what's helped my child's gut. Eating kefir yoghurt every day and an apple. Processed food helps her, crazy I know! Because it's easier for her body to break down! We will all have home cooked meals 5 times a week and she'll have fish fingers/nuggets/pizza with vegetables and carbs. Drinking mineral water has really helped her too. Try these things.

It sounds really hard OP.

Like @TodayIWillChooseJoy suggests, some of your symptoms sound similar to histamine issues and you might want to look at this website. There are some dieticians associated with this group who might help you think about your symptoms as a whole

https://www.mastcellaction.org/

Thank you. Everything you have written there makes complete sense to me.

I often wonder if I carry a lot of autistic traits too, I have had many issues since I was a small child. I am still processing the adhd diagnosis as it was only this year at the age of 52.

I had a lot of issues as a child but have always felt my parents didn't help me understand what I was going through (but in their defence they probably didn't know either), I have spent many years trying to push through with a carry on as normal attitude and hold everything in. I always describe the way I feel within myself and especially within my digestive system is that it is completely dysregulated.

My symptoms are not as bad as yours but I started eating freshly ground flaxseed every morning, about a tablespoon, and I no longer get the 'morning rush' and stools are normal shape. It was a game changer.

@Roselilysnowdrop I really hope you get some relief. FWIW my son's gut issues were nothing to do with what he was eating - there was no rhyme or reason or pattern to his feeling rubbish. The acupunturist/doctor didn't give him a diagnosis either but said he suspected that a virus or something (yes it's that vague and I would have been furious to pay the ££ if it hadn't worked) had caused a build up of 'gunk' in his gut which stopped it working properly. The acupuncture was like an ice pick that broke up the ice/blockage every month and each time it would reform slightly less firmly until eventually it dissipated.

i never had a problem with my digestive system but then I read somewhere that Apple Cider Vinegar taken in hot water was terrific for you. It still gets great praise.
However for me, and I know it may be entirely coincidental, my problems with acid reflux started soon afterwards. This was about 15 years ago and I now have IBS/D.

That all sounds really tough and no wonder things are building up after so many years of holding it all in. It is sad that you've had to wait so long to get help for the endometriosis too. My diagnosis is fairly new too - I am on the waiting list for medication to see if this will help! Are you trying medication? You don't have to answer that if you don't want to.

I am hoping once I've processed as much as I can and have had the operation that I can start to make some changes that will help me cope with life a bit better. I have been working against my brain for most of my life and now it's time to work for it.

That's good to know. I think we have a pack in the fridge somewhere. I think i'd need to start with just a sprinkle first and see how I go as I seem to be super sensitive to fibre.

I often wonder if food is not my issues either because on the 2-3 'good' days I have per month when I eat there is no reaction at all, my digestive system is as calm and relaxed as can be. Something must trigger those good days. Maybe acupuncture could help re-set that? Wish it wasn't so expensive though.

I've been offered Zoladex injections but I was concerned about the side effects, I'm struggling with my peri symptoms so not too keen on being thrown into full menopause overnight and my gynae says if you do get the side effects then I'd have to wait for them to wear off which can be weeks. I am considering a new pill version which he has suggested called Ryeqo oral, so if it doesn't agree with me I can stop taking them. I have also been reading about a newer progesterone only med called Slynd. I need to make another appointment with my gynae but the waiting lists are so long, I may see if my new GP surgery can help.

Good luck with everything, I truly hope it goes well for you.

@deeahgwitchre your ACV consumption - prob caused your acid reflux as it’s so acidic it will give you reflux!!!

Look up Histamine Intolerance, and then Mast Cell Cytosis. Mast Cell problems are very difficult to diagnose, though there are a few specialists in the UK. At the same time look up Ehlers Danlos (linked to gastric and connective tissue issues) and Oestrogen Dominance. These 3 issues can go hand in hand and can explain your symptoms. Treatment is predominantly through diet, reducing stress and inflammation in your body. I try and avoid any medicine as it hasn’t ever helped. You might need a very particular iron supplement, and probiotics that work with histamine intolerance. Look up the brand Seeking Health. In sensitive people, a lot of the fillers in vitamin pills or medicines can trigger histamine flare ups so you need to watch for that. Read up about the ‘histamine bucket’. Histamine intolerance reactions happen due to an accumulation of histamine, so you can have something one day and be fine, have it the next day and become ill. You might need to tweak the FODMAP diet to find what works for you. Very important - no processed foods, no frozen foods, no leftovers. Bacteria release histamine in your gut, and all of these foods will have increased levels of bacteria. I’m so sorry, you’re feeling rubbish. In my experience, the medical community is not brilliant at all of this. I had one excellent Doctor many years ago who guided me in the right direction, and since then I’ve done a lot of research myself. I’m still finding out more every day, but at least now I know what makes me sick. If you are not gluten intolerant (which is easy to test for) then you don’t need remove gluten from your diet. Lactose is easy to remove, and lactose intolerance goes hand-in-hand with histamine intolerance. There is a test if you want to have it, though probably not on the NHS. A low histamine diet might seem restrictive at first, but when it begins to work, you realise that the other foods have literally been poisoning you and it becomes very easy to stick to.

Hi, I would look into the mind body connection. Central sensitization of the brain can cause gut symptoms. Check out SIRPA and curable for.more information. Curable is quite pain focused but does work for non pain symptoms.

No dairy, no wheat, low sugar, no alcohol, nothing deep fried.

Good sleep, regular 24 hour fasting.

Meditation and yoga.

I suffer from similar issues on and off but not as bad as you OP you poor thing. The one thing I have found most helpful is Apple Cider Vinegar (has to have the mother) taken daily in a glass of water. It’s actually amazing how much it helps. May not work for you but definitely worth a try if you haven’t yet. You have my utmost sympathy as it’s awful being plagued day by day with these symptoms with absolutely no answers as to what the cause is.

Normally gyne make the appointments your GP cannot, once the inital referral has been done. If they said you'll have a follow-up, try and get in contact with the ward to help, or the consultant secretary and see what they say.

With something like Zoladex, you should get add back therapy to help, so HRT on a low-medium dose, that really reduces side effects for most people. Link below on it: https://share.google/aMSOSW0wRkzOAFuum

If your looking into something like the mini pill your GP can prescribe that, the others gynecology consultant would have to start it and then it can sometimes be transferred over to the GP. So you could try it whilist you wait for your follow-up? Progesterone works quite well at thinning the lesions, and also stopping further growth, so it's a good idea to try.

I'd say overall you should try things as you won't find anything to help if you don't, pain meds can also be great especially if you take then more consistently. Have you tried an NSAID like mefenamic acid or naproxen?

Do you have more constipation or diarrhea? You could ask your GP to prescribe anti-motility meds for diarrhea? And stronger laxatives like osmotic laxatives for constipation. You could use them as needed and it would likely help a lot.

When are you having your gastroscopy? Are you having any other tests at the same time? I'm sure you said but I can't remember.

Sadly, I am not due a follow up now with my gynae, I'm now on his waiting list for the hysterectomy. The only way I can get to see him again is if I ring his secretary and request an appointment which I have tried to do but it'll be a few months to see him, I may get my hysterectomy appointment by then?

I have tried lots of different medications, including most of those you have suggested. I have tried several forms of HRT but they all made the pain worse. I have added complications due to the uterine ablation in 2022 failing and causing additional pain, the HRT exacerbated it all sadly so my Meno specialist has advised I hold off any kind of hormonal replacement until after the operation. Cerazette did not agree with me at all, I have read there is that new one called Slynd(?) and will ask about that.

My stool form are as I have described in my OP, very soft and hard to pass causing pain and discomfort so neither constipation or diarrhoea. Laxatives send me one way and anti-motility the other. Neither Mebeverine nor Buscopan do anything. I take Colpermin which helps a little and I'm worse without so stick with those for the time being. I have tried all the IBS meds but having IBS-mixed is a nightmare, most IBS-M sufferers struggle to find meds which suit.

I'm on the waiting list for the gastroscope and have been told it could be a few more months as yet as it has been entered as a routine scope. No other tests as I have had most. My gastro said on my last telephone follow up (I have them yearly) that she will discharge me next time as there is little more she can offer.

Hi @MorningFresh what was the supplement please?

Reflux can be caused by loss of acidity. Especially after PPI drugs. Taking drugs to alkalise the stomach just promotes and continues the problems.

One mad thing that sorts me out is a special chow mein from the takeaway shop. And I've no idea why. Waiting for hip replacement I'm on four cocodamol a day. That's controlling it too.

Sorry, I meant Mast Cell Activation Syndrome

It's a long time ago now, but I think it was a probiotic, had caprylic acid, and maybe coconut?

Have you considered Mast Cell Actiivation Syndrome (MCAS) or histimine intolerance? If you google MCAS and IBS there is lots of information there. Same with histimine intolerance. Although I have suffered from IBS, but not badly, I have multiple intolerances (including food). A am sure that with perimenopause I suffered MCAS symptoms, which are often throughout the system. I really feel for you. You could try to find a Nutritionist who specialises in these areas. Again a liongshot and I really do wish you luck! Also an Osteopath suggested I might have a hormone imbalance. Having subsequently gone through menopause, that actually makes sense. But in view of what you have said I would perhaps suggest the nutritionist route first.