What is wrong with my awful digestive system?

[JustlookingNotbuying]

I am really at the end of my rope with ongoing digestive woes, I can’t get my system to act normal and it’s really having a huge impact on my whole life.
I have had a very sensitive digestive system for 24 years, since the day I suddenly pooped myself at work. Nothing has been right since.
But during my 30’s it was mainly under control and only bad food or stress/anxiety, appointments etc would make it worse.
Since my mid 40’s though (been about 4/5 years) things have gone haywire and getting worse each year. This year my guts have been playing me up on an almost daily basis with only around 2-3 ‘good’ days per month. These days are bliss and leave me feeling normal again but it soon goes back to being bad and I have no idea why (I’ve kept a food dairy for these 4/5 years and can not see a huge connection to food).
Three years ago I had a colonoscopy with a gastroscope and a ct scan (all fine). I have had numerous ultrasound scans on both my upper digestive organs and my gynae areas - again all ok although I do have regular uterine polyps, very heavy periods and regular ovarian cysts (had an ablation in April).
This year I had a pill camera endoscopy and apart from some mild erosion areas in my stomach, which the gastroenterologist was not concerned about, all ok. I have had blood tests, tests for coeliac, h pylori and 2 FIT tests. I am awaiting a SeHCAT scan and a SIBO breath test.

My symptoms are upper and lower:-
Upper - Bad nausea, burping, bloating, excessive gurgling pain, acid (goes through to my back) - This all seems worse mid cycle for some reason.

Lower- Excessive gurgling, bloating (which comes and goes - some weeks bad, other times better), a stitch like discomfort in my lower right area, lots of farting sometimes and sometimes much less.
Basically, lots of activity in my digestive system like it’s angry, unhappy and unsettled.

I have urgency most mornings and (sorry if TMI) quite loose and toothpaste/mushy like poop. Very occasionally will switch to a day or so of constipation.
My 2-3 ‘good’ days seem to happen at the end of each period.
I have absolutely had enough of this - I’m so bad in the mornings and feel so uncomfortable, unsettled in the guts all morning and worried I’ll need the loo out and about although often it’s just once or twice a day that I go I get the feeling that I need to go all day. It has a huge impact on my mental health.
Often (but not always), evenings are more settled.
I have zero appetite because of how I feel.
I have seen dieticians and am low fodmap (been on it way too long as I’m now afraid of high fodmap foods), I’ve gone gluten free, I am dairy free, avoid all foods I know upset me, no artificial sweeteners, no alcohol - no life lol!
I have done lots of CBT, had hypnotherapy several times, meditation etc - nothing helps.
I have tried all the standard IBS meds, peppermint, probiotics, kefir etc.
Imodium helps to a degree but stops me going and as soon as I stop taking them I go back to the above symptoms.
I am really at the end of my rope with ongoing digestive woes, I can’t get my system to act normal and it’s really having a huge impact on my whole life.

The gastroenterologist can’t help, he referred me to a neuro-gastroenterologist, I waited over a year for my appointment only for her to tell me to take Imodium and that I have got to learn to live with it. I wanted to scream at her ‘What the hell do you think I’ve been doing for 24 years!’.
Has anyone else had anything like this? - I don’t know how else to carry on. I feel crap most days.

My sister has symptoms a bit like yours though not as frequent and she is post menopausal. They began when her DH was diagnosed with cancer around 9 years ago.

She has had a lot of investigations that have revealed nothing.

Her DH died which was obviously extremely traumatic plus turned out many financial things had been hidden by him. He had basically lied about money behind her back for decades, it was incredibly messy. My sister also suffered extreme trauma when she was a teenager. I’m personally convinced the trauma when her DH died and all the lies uncovered destroyed the poor woman’s resilience completely and she couldn’t hold back the events that happened decades before back anymore.

I am not asking you to share your life story. I have tried to get her to have therapy but she doesn’t believe in it. I think her body is reacting to two unlinked events many years apart and it just can’t cope. Her stomach was always a bit sensitive. It’s like the body attacks itself in what is our weakest area. When DH gets stressed his eczema flares up it’s rare as he is a very laid back person. I have an issue with my back and when stressed I get back ache which can lead to sciatica.

I may be completely wrong but have obviously supported my sister for many years with something a bit similar and after all the tests and diet changes it’s the only thing I can think of. I do feel,very badly for you as I have seen what my sister gives through and how it restricts what she does sometimes.

Good grief, I could have written your post (except my 'stitch-like pain' is on the left side).

Like you, I've tried everything - peppermint, probiotics, kefir (so much bloody kefir!) etc, but nothing. I can't link outbreaks to anything specific, either, although like you, it definitely varies in symptoms / intensity throughout my cycle.

I haven't had any investigations yet, but I am considering it, as it's definitely getting worse as I get older (43 now, have probably experienced variants of these symptoms on and off since my early 20s).

Do some people just have very poor digestion? I will admit it worries me, particularly as we're told how important gut health is to whole body health.

I can broadly relate. Same long history of digestive issues. Clear test results every time I undergo a test. Its IBS isn't it? IBS is what you are diagnosed with when nothing else is found. I had bowel issues for decades, only started upper tract issues a few years ago. Gastroenterologist said it was still IBS, that she had seen many patients whose lower tract symptoms had gradually migrated to the upper tract. I suppose that was of some comfort to me, to know I was not alone.

I've tried all the usual diet and medication. I can't say I've found anything that radically makes a difference. I just try to stay calm and as stress free as possible (hard for me as I am a very stressy wound up individual) and I do think trying to be more chill helps as much as diet and medication.

Oh you poor thing, that sounds awful.

I know that gyneacological issues can impact gut health (release of inflammatory "messengers" due to menstrual cycle can also increase inflammation in the intestines as they're sort of "next door" to each other), so I'm wondering if there's anything there that could be addressed, e.g. the heavy periods.

Other than that, it sounds like you've tried everything you can think of and nothing seems to help. I do feel for you.

I suffered in a similar way for years and was in utter despair. I wonder if, amongst all your other investigations, you've ever had a gut biome analysis.
I've got a raft of auto-immune conditions and started to see a functional medicine doctor to try to boost my immune system. I do point out that she is a fully qualified MD who is also additionally qualified in functional medicine: there are some dodgy 'practitioners' out there.
Anyway, she ordered a gut biome analysis which come up with some quite unexpected things, principally extremely high levels of bile acid, plus various harmful bacteria. This meant that she could pinpoint supplements to treat my particular gut, rather than one-size-fits-all treatments or simply-putting-out-fires treatments which is what my GP gave me. She addressed the causes, in short, rather than treated the symptoms.
The outcome has been miraculous and life-changing.
The only drawback is that it has been expensive. The consultations are expensive; the tests are expensive; and the supplements take a good wedge out of monthly income. But I've bought good health so it's been worth every penny.

I would put money on this being at least partly hormonally driven. Are you on any HRT/hormonal contraception?

JustlookingNotbuying your symptoms are quite in keeping with IBS, has no one mentioned this to you?
IBS is often diagnosed when other causes have been ruled out, which is your case. The link above explains it, and has some further links which may help you.
As you see above you won't be the only one suffering like this. I am a nurse in endoscopy, and I hear this so often from patients. There is no 'cure' it's about symptom management. I'm sure you know all this already, wish I could be more use. Definitely the mind and gut are extremely closely linked.
Have you tried BIOKult? I've heard it recommended by some of the consultants, it has much higher bacteria than the yogurts etc.

One thing you've not mentioned is trying a low FODMAP diet. I know you've said from your food diary that your issues don't seem food-related, but FODMAPs are in so many things it would be hard to see a pattern. You can also be sensitive to only some things, and it might depend on quantities. It's worth looking into.

A family member has identified gluten as a problem for them - he was tested for Coeliac, but there were no signs of it. However, since cutting out gluten he's been so much better. Stress is also a huge factor for him. I agree with others who have recommended therapy or other psychological approaches.

I hope you get some answers

@JustlookingNotbuying have you had your gall bladder removed?

OP does say she's on FODMAP.

I agree with @Boscoforever, it does sound like IBS and I should have mentioned that in my post! Low FODMAP is one of the first approaches for IBS these days, I believe.

Oh bloody hell I despair of my brain. Apologies OP

Adversity Your poor sister, that does sound like a lot to go through. In all honesty, looking back I was going through a lot of stress when my symptoms first came at 25 (dad lost his business, my sister was in an abusive relationship, I had changed jobs and was buying my first house) and although I had a good childhood I do believe that I had, and obviously still have, inattentive adhd. This latest bad spell of gut issues really flared up 5 years ago when my ds had severe school anxiety, he’s better now but my digestive system is not!. It so hard as I struggle to get anyone on the NHS to help and can’t afford to go private. I hope your sister finds some relief, it’s no fun but you sound like a lovely caring sister.
AffIt I do wonder if Perimenopause has flared everything up, this big flare started at 43. I also worry, God only knows the state of my gut biome!
beefilm/Same for me too re the upper issues. These only started the last 5 years, never had stomach issues before. I too am the anxsty/wound up type, tried overthink to de stress. So hard when there’s is so much stress in my life.
Thank you ClawedButler I do often wonder if my hormones and gynae issues may have a relationship with my gut issues?
Bideshi I haven’t had this done but would love to, it’s something I have looked into but just can not afford it, all the functional practitioners I’ve contacted are out of my reach unfortunately. I am saving up for the Healthpath comprehensive stool test, so hopefully that may flare something up which could be addressed 🤞

I do wonder DazzlePaintedBattlePants I am not on any hormonal treatment. I have loads of peri symptoms but it’s been an absolute nightmare trying to get a gp to agree that I’m in peri but I’ve changed my gp so hoping she will help.
Boscoforever I think the thing which drives my anxiety over this is because I have had IBS for 24 years but then having this change of symptoms from 19/20 years following a particular pattern of symptoms coming and going and being quite predictable to the last 5 years having upper and lower symptoms and virtually daily and unpredictable just drives my anxiety over everything especially with so much media coverage recently over bowel cancer. I have tried various probiotics but they make me feel worse sadly. Thank you for the reassurance.
AnonymousHippopotamus Thank you. I have mentioned that I am on the low fodmap diet and do a food diary too (sorry, it’s a long thread, easy to miss). I’ve tried so many different foods but have just started gluten free again so will try and stick with it (have a huge baguette habit!).
JackandVera I still have my gall bladder, an ultrasound scan in April didn’t show up any stones etc.

have you looked into MCAS and a low histamine diet ?
can often be hormone driven so would fit in with your symptoms

OP don't know if it helps, but you sound just like me, right down to the tests, the all clears, the bad days, etc. I was diagnosed with IBS which if you ask me is a bit of a non diagnosis as it only really explains that a person has all these kinds of symptoms and a general irritable digestive system. Anyway I've gotten it 95% under control with a cast iron will and very restrictive diet - what works for me is zero dairy (also no dairy free branded products as they often have a milk protein that sets me off), no wheat, no rye, no oats, no corn, low sugar, no wine, lots of water, and I take a good multivitamin, Multimineral and probiotic daily. It makes a HUGE difference. I'd recommend it. Yes it's restrictive but literally the only thing I can do else I get terrible symptoms. I have been doing this for donkeys years now and it's surprisingly easier the longer you do it.

Just to add probiotics work great now but until I'd gotten all the right food restrictions in place, they just made my symptoms worse.

PamelaBanisha No, I haven’t, thank you, I will have a look.
Softplayhooray I think I am going to have to reevaluate my diet as the low fodmap just isn’t helping. Could I ask you what an average day looks like? What do you have for breakfast, lunch and dinner? Do you have snacks at all? Years of these symptoms have totally buggered up my appetite, I really despise food these days so will need to be so strict and stoic with it all.

Following as I have the same symptoms, however mine got worse after menopause. Hope you find something that helps evenly slightly.

Sounds a bit like me. I have diverticular disease. It's shite.

Mine is on my left too! Has been present for about two years. Had an ultrasound and blood tests to be told nothing is wrong. Been given ormapraxole and various other things to no effect. Am currently intermittent fasting and low carb and it seems okay, but honestly not banking on it lasting as it usually doesn't go for long 😢

@MysteriousMonkey I 'self-medicate' with the odd 7 or 14-day course of omeprazole (bought OTC) which sometimes puts a lid on things for a while, but it inevitably flares up again.

Also veggie and low-carb (have tried FODMAP in the past but it's incredibly difficult as a veggie).

Always worse in the morning, improves throughout the day, especially if I do some brisk exercise and drink plenty of water - closer to 4 litres than 2.

Does your left-handed 'stitch-like pain' sometimes almost feel like something has folded under your ribs?

(This is a great thread, btw - if nothing else, I feel a lot better knowing I'm not alone!)

I feel better too, felt like the doctors were quite dismissive, like I was imagining things because I couldn't have a left hand side pain! It does feel like that sometimes, when it's really bad it's awful, at one point last year I called 111 because it was so bad I was convinced something had ruptured or split I waited 12 hours for a call back and by then had concluded all by myself I wasn't dying which was good because the person who called me back told me to speak to my doctor... Again.

I haven't been using ormapraxole at all but am taken various things, l glutamine, cod liver oil, a pro biotic and a multivitamin. It's so hard to know if it helps but it's definitely not painful like it was last year.

I am also limiting caffeine as I read somewhere that could help... Do you find you've fallen down so many Internet rabbit holes trying to find answers that you're more confused than ever? 😅

PsI Agreed, it is harder being veggie though, I feel for you. I did low carb years ago when I was vegetarian and couldn't stick with it.

Pps, fwiw I was 43 when this all started.

Sorry to hear about your digestive issues

I have had similar for about 3-4 yrs, diagnosed with ovarian cyst which was removed 2019

Since lockdown it got worse,urgency,bloating, similar to what you have described wake early, 5am, every morning for a poo (sorry if tmi)

It has fluctuated since then and I relate to your mental health related issues as I have similar as it is so debilitating

I have put it down to the menopause when ai tried HRT with oestrogel felt great and then with progesterone it got worse!

Now eat mainly vegetarian food and healthy options to 'manage' it

cantheydothisreally I get the urgency thing in the morning too, even though I can sleep through the night ok as soon as I wake it kicks in.

justlookingnotbuying around 5am