Has anyone ever managed to overcome poor digestive health issues (IBS/functional gut problems)?

[WearsblackLoveschocolateAvoidspeople]

I apologise in advanced as this is so long but I am desperate for any advice or to see if anyone has been here and got better?

I am at a complete and utter loss. After spending half my life with digestive issues I have reached a point where I feel I will never be free of this, ever.

I developed IBS at the age of 25 after a period of stress. I am now 51 and although the gut issues had been mainly manageable in my 30’s (some bad weeks here and there), since I hit my mid 40’s things have been dreadful and have completely ruined my life and continues to do so.

My digestive system just seems against me all of the time. I now suffer from these symptoms daily with hardly any let up. On a month to month basis I will probably experience between 2-4 ‘good’ days per month the rest range between not great to bloody awful. These are my symptoms,

Morning rush as soon as I wake - can be anything from pebble like poop (get this a few times a month) to loose and quick.
Rectal discomfort and sensitivity.
Very regular nausea (this has been since my mid 40’s).
Acid and excessive burping (brick like feeling in guts).
Sudden urgency after eating or needing the loo an hour or so after eating.
Bloating in the evenings to the point I look pregnant.
Excessive tummy and colon gurgling.
Trapped gas and flatulence all evening.
Constant fear I’ll have diarrhoea whenever I am out.
Overall a very strong sense of what’s going on within my digestive system - visceral hypersensitivity.

I have seen 5 NHS gastroenterologists, 3 dietitians and 2 private consultants. Over the last 5 years I’ve had the following tests:-

2019 & 2023 - 2 x Full colonoscopy with biopsies
2019 - Gastroscope with biopsies
2022 - Pill camera endoscopy
2023 - Bile acid malabsorption scan
Aug 2024 - Ultrasound on gallbladder, pancreas, stomach etc
I have had several Fit stool tests and Calprotectin tests, thankfully all of the above tests have been clear.

2023 - I paid privately for a full stool test which came back with dysbiosis (not surprised as my diet is very plain and basic)

2023 - I tested positive for SIBO (small intestinal bacterial overgrowth) but my current gastro and dietitian have said not to focus on that as it’s a hit and miss thing. I did try the antibiotic Rifaximin but it made me feel worse.

Late 2023/early 2024 - pelvic mri and ca-125 blood test (see below).

My gastroenterologist is no longer interested and has now put me down for once a year consultations with the goal of discharging me next year (even though my symptoms are now worse rather than better).

I have tried so so many things to help, I have exhausted all of my savings and have gotten nowhere.

Things I have tried and many still follow:-

Low fodmap diet and avoiding my known triggers which include onion, garlic, dairy and wheat (I’d probably be worse without doing this but still having so many issues), admittedly I have a bad relationship with food now as I have this ‘what goes in has to come out’ fear. I have kept a food diary for years, can’t see much of a relationship with food if I am honest.
I only drink water.
I walk the dog every day and use my exercise bike.
I don’t smoke.
I am slim and keep my weight down (that’s more down to my fear of food I suppose!).
I try to get 8 hours sleep every day.
Listen to gut directed hypnotherapy each day and the Calm app.
Before I go out I will take an Imodium (only go out if I have to these days, no social life anymore).
Occasionally will take Mebeverine and peppermint but they don’t really help much.
Probiotics make things worse as do probiotic foods.
Tried antidepressants but they make the diarrhoea/loose stool worse.
Spent a small fortune on alternative therapies including gut directed hypnotherapy which hadn’t helped at all but I still practice every day as I enjoy the calming effects on my brain.

It also doesn’t help that for decades I have also had awful gynae issues. Told nothing wrong apart from uterine polyps which I’ve had removed many times. I had a uterine ablation back in 2022 which has failed causing me pain. I requested a pelvic mri approx 8 months ago which has revealed endometriosis and adenomyosis (I am now on a year long wait for a laparoscopy). I have asked my gynae if the gut issues could be related and he says no and was not interested in discussing it, however my gastroenterologist says maybe so who bloody knows 🤷‍♀️

I don’t know if perimenopause is exacerbating all of this (it did all become worse from the age of 46), I read anecdotal stories of women in peri experiencing gut issues but whenever I ask a medical professional they just shrug. Can’t take hrt as it could exacerbate the endo.

I won’t lie, I am under a huge amount of stress which I know will not help my issue. Not only am I under constant daily anxiety worrying how my guts will react, I am also under so much stress due to the fact my mum was diagnosed with Alzheimer’s 6 years ago and breast cancer this year. We had a consultation with her bc specialist last week and I had to run out of the room and barely made it to the loo, I was mortified. My dad doesn’t cope with the stress of my mum’s illnesses so I am trying to hold them both up and I see them 4/5 times a week. It’s exhausting doing this, coping with gut issues, and my own family (dc and dh) and holding my parents up.

I feel I am barely coping with these daily tummy problems. I only work 8 hours per week because of this and even that is a struggle. I need to work more, I need mire money coming in so that’s causing me more stress….

I am so sorry that is such a long post but I am at my wits end. Can anyone relate? Can anyone offer any advice? Anything?

DH has had very similar issues to you for years.

We had a chance conversation with a family member who was saying that they thought they have an allergy to sulphites. We went through everything in the cupboard that DH says affects him and they did all contain sulphites.

He's much better now he had massively reduced how much of them he consumes.

I'm sorry about your DM. Is she still living at home?

I found ZOE's big gap is low FODMAP foods. It doesn't account for that. I couldn't reach the targets they set without eating huge amounts of legumes/beans and it triggered my first bout of IBS in years.

I don't know why they don't cover this. Zoe clearly know all about low FODMAP etc but their program has no accommodations for those of us with IBS.

I found this out after signing up for a year. 😐🙄

So it's pretty much useless for me though they do have some good recipes.

I have written to them about it but no reply.

You aren't missing out.

Check out that podcast. I find listening to episodes calming and healing in itself. The tool she teaches (a form of journaling) can be really helpful and doesn’t require you to make changes to your life.

And if you're not already, do come and join us on the Elderly Parents Board. Lots of wise and experienced MNers in there who can offer practical advice or just listen if you're having a tough day

This is interesting. I probably have IBS (told by doc, but not diagnosed). I found out during an MRI that I have adenomyosis, but no symptoms. I'm resistant to having a hysterectomy (advised for a different reason), but I do wonder how you know if your gastro problem is actually a gynae one.

" avoid raw, greasy, sugary and diary based foods"

Doesn't leave much!

Hello, long shot, and I don’t have digestive issues, just the last 2 das started taxing flaxseed oil, for my mid stage Parkinson’s. It’s now getting nasty.
Had a woman at my local nuro cafe, she runs flax farms in Horsham, saying flax has lots of benefits, maybe worth trying?

I’ll try more as I’m willing to try anything but the stuff makes me want to vomit, it’s hard to get over the fact that it’s not off/out of date. Not haven eaten dairy for so long has removed my desire for anything creamy tasting then add in that fizzy taste of kefir and I’m heaving but I’ll persevere.

I’ll check that out, thank you.
Yes, mum is still at home at but may need to go into care next year.

Thank you, I do dip in and out but need to get on there more often.

I will look into that, thank you.

Eating kefir and an apple every night, has been a real game changer here.

I really feel for you, I have lived with most of these symptoms since a teenager and never had any answers, although I know some foods to avoid. Mine improved during pregnancy so I'm inclined to think there's a hormonal connection. Hormonal contraception can cause some people issues too. It's a minefield as there's so many things it could be.
Sorry if I've missed it as I skim read, but have you tried Buscopan? Silicolgel can help a bit too.
I haven't tried it personally but slippery elm supplement is supposed to be good for the bowel. Some people also find bulking products helpful, such as Psyllium husk supplement or Fybogel.

I'm not sure how you'll feel about this but sometimes there is no cure and the best way to live with a chronic condition is acceptance and symptom management.

I have a very similar decades-long history to you, from the daily pain and urgency to most of the same tests, dietary changes and medications. Nothing I have done has made much of a difference, though as a baseline I avoid dairy and gluten, stick to low fodmap, and take loperamide daily.

But chronic conditions are debilitating and life-changing. Things improved for me when I accepted my life would never be how I wanted and adapted myself to this fact. Some examples are that I never leave the house before 11am (the urgency and pain in worse in the mornings), I travel by train as I can't risk getting stuck in traffic jams, I always have spare knickers and loo roll in my bag and, vitally, I prioritise avoiding stress.

Practically my life is far more limited than I'd like but mentally I'm well now that I've stopped the endless (and expensive) search for a cure. It's also nice no longer having to deal with all those medics who have either given me poor advice or dismissed me over the years!

Sometimes giving up gives you your life back - not the life you wish you had but the best one that is possible.

My daughter has IBS and tried loads of stuff. She now takes a specific probiotic.
It's specifically L Plantarum. It's massively improved her symptoms.

I sympathise. I suffered for years with bowel issues. It's very debilitating.
Can I ask, do your good days have any pattern from month to month?
I've really worked hard to improve my gut flora and that has helped massively but it took a good year of work to get to where I am now. I'm also lactose intolerant. I also feel like there's a hormonal element to my symptoms. When I originally tried cutting out dairy it didn't help so I thought I wasn't lactose intolerant but actually I had a few different things going on all at the same time so it's really difficult to decipher what works and what doesn't.

I was like this all through my twenties. It was work related stress that started the whole sorry cycle.

I finally ended up taking time off work which helped. But since then, if I feel it coming on then I'll fast for a few day. Just sipping water and eating a small amount of rice and egg.

What happens if you fast?

My sympathies to you- it's shit.

I’ll check that out, thank you.
Yes, mum is still at home at but may need to go into care next year.

It's super hard is t it when they're still at home. We had issues with DFIL being in denial and not accepting any help. He just kept saying "I want to keep her at home" with no real understanding of what that meant or that if he'd actually accepted help she probably would have been at home for longer than she ended up being.

Anyway, sorry for the derail but hopefully see you soon in the Elderly Parents Section

Lots of sympathy. Yes, stress likely a driving factor but that’s not helpful info when it’s driven by external factors you can’t control. My IBS was 100% driven by gynae issues (endo). I was on the pill to control the endo; the pill further worsened IBS. Menopause has been a blessed relief. I am much better now. Came on to recommend Chanel 4’s know your shit and I think Dr Will B (of fibre fuelled fame) might be worth looking up on the internet. I know he writes about all the symptoms and has some suggested protocols (he works with Zoe). Just sending a big hug though.

I definitely think hormones play a part. I had zero symptoms during my first pregnancy and could eat whatever I craved, even dairy which usually has me on the loo within an hour but I could guzzle milk with no problems.
I have tried all the otc stuff including buscopan, slippery elm and silicol and enterosgel (which cost me £20 per week!).

I’ve just started with psyllium husk so keeping my fingers crossed for that.

OP I suffer with almost the exact same symptoms as you and it can be debilitating.

I'm very interested in the posters mentioning gynae issues as I've very recently found out I have andenomyosis and endometrioma on the bowel. I'm convinced this is what's been causing me bowel issues. I was also put on a two week course of antibiotics for an infection in my fallopian tube and that really sorted my gut issues out. Which makes me think that there may be some SIBO too.

With everything you've done so far with your diet with little success,I would pursue the gynae angle. It's actually really scary and upsetting how dismissive doctors can be with this. And how they just don't seem to be able to join up the dots. Luckily we have health insurance with DH's work, so I've been able to go private and have more investigations done. I'd be very happy to have a hysterectomy if it would make the bowels issues go away. For me that would be totally worth it.

I hope you get some answers soon.

There is definitely something in this. I do accept that O am constantly battling against this with such a burning desire to be ‘normal’.
I am under the UCLH’s neuro-gastro department. I am due to start group acceptance therapy in October so this may change things for me if I can indeed learn to accept this condition?

I have IBS-c and the absolute best thing I've found for me is keto and OMAD. However it's difficult to maintain, so my compromise is keeping carbs as low as possible - wheat free, no more than two meals a day, probiotics, breakfast if I have it is home made yoghurt, homemade muesli (rye flakes, giant oats, almond, hazelnut, raisins, pumpkin seeds, flax seeds and chia seeds) and fruit. Dinner is usually something along the lines of meat and veg. Shitloads of water, magnesium and b6 supplements. Think that's it.
And as a last resort if all fails - enemas (hypertonic pelvic floor is a bastard)

Thank you, I’ll look into that. Do you know where she gets it from?

I find I am better a few days after my period ends and then a few days after mid cycle, hormones are definitely exacerbating everything.
I really need to work on my gut micro biome, that’s my current goal.