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?

I have had bad IBS all my life and I do know how to manage it now.

If I eat past 7pm, eat anything processed or have too much coffee my bowels become sensitive to anything.

You just need to try and work out what your triggers are and try to a avoid them.

I think you need some support with the stressors in your life at the moment. There are probably other mumsnettersbthst that can give better advice.

I have an almost identical history to you ibs wise (although mine started at 19) and I am now 43. The only thing that’s made any difference is amitriptyline- taken for another condition I have. I take 10mg a night and it’s almost completely cured my bowel issues. Worth asking about. There’s a lot of evidence online that it really works for ibs.

Heavy duty pro biotic this was a game changer for me, a 6 month course turned my life around. I still take a regular prebiotic now but started off with biokult first.

That's interesting, I had the opposite experience. My IBS was triggered and worsened when I was put on amitryptyline for tension headaches. I didn't know it helped some people.

I have kept a good diary for 5 years. I really can’t see a major food trigger tbh. I basically eat at the same times and eat the same foods every day yet I have these few good days per month yet I’m eating the same foods.

I follow IF so don’t eat after 7pm either.

Oh wow I’m surprised. 😳 We’re all different I guess! There is definitely a lot of evidence out there that it helps with diarrhoea based ibs.

This is something I’ve been very much considering.
My gastro offered me a prescription for Nortriptyline.
I need to consider taking this, I’ve just been putting it off due to concerns about possible long term side effects from the med but as I literally have no life now I suppose I have nothing to lose.
It’s good to hear it’s helped you, thank you.

I was diagnosed with ibs for about 20 years. Then discovered I had adenomyosis and endo with bowel adhesions. Had a hysterectomy. My bowel symptoms were almost instantly vastly better. They may also be connected for you too.

I did try this but it made me worse.
I’ve also tried Alflorex and Symprove.

Are you IBS-c? My sister suffers constipation and Amitriptyline made her wise.

OP you mentioned wheat but have you tried strictly gluten and dairy free for at least two weeks? If not I can’t stress enough how much it’s worth a shot.

I do wonder if this has been my issue all along. I was quite annoyed when the gynae dismissed me when I tried asking about the connection as many on the endo support groups I follow have some gut issues.

And sorry: to answer your initial question: yes, I fixed my digestive health (without the NHS I must add!) through an elimination diet and lots of probiotic foods.

I’ve not touched dairy for almost 20 years and have been gluten/wheat free for the last year.

Another one here with adenomyosis, there's definitely a correlation between this and gut/bowel discomfort. I also suspect a link with gut/bowel issues.

I am rigorous about no dairy, wheat, alcohol, caffeine but still experience days of violent diarrhea the minute I eat anything.
I have some safe foods I eat if it's essential I'm not running to the loo.
It's really rubbish and you have my sympathy.

Did you do this through a dietician/nutritionist or via your own research?

OP if you’ve not tried a low dose TCA antidepressant you need to get onto your GP asap. Like you, I’ve suffered most of my life (from childhood, I’m 38 now) and amitriptyline made a massive difference. Unfortunately the side effects were intolerable so I wasn’t able to keep taking it, but please give it a go. I really feel for you.

I don't have digestive issues although I did some years ago during a very busy, stressful time.

As a precaution and general health supplement intake this -

www.hollandandbarrett.com/shop/product/bioglan-inulin-powder-60009726

I've also been reading about Biomel but haven't bought it.

I’m so sorry you experience this too, it’s really no fun is it?
I follow a lady who has endo and has been following a anti-inflammatory diet this year and has had great results controlling her pain and bloating. I am thinking of trying this.

Thank you. I think this is why they suggested Nortriptyline as it’s supposed to have less side effects, apparently?
I should try it.
Have you managed to get your symptoms under control?

I follow the low fodmap diet, sadly inulin is a high fodmap supplement and triggers me.
I have tried biomel, love the chocolate one. It didn’t make me worse at all but after a few months I stopped as it didn’t improve things either.

Artificial sweeteners are bad for my gut and give me cramps and bloating. Could this be the issue?

Sorry you are having such a hard time with your digestion as well as the family stress

I had IBS symptoms (including constant diarrhoea or constipation, flatulence, bloating, acid) for about 5 or 6 years, exacerbated when I hit perimenopause as well, they have disappeared in the past 3 weeks when I have been low carb eating. Aiming for as few carbs as possible but not proper keto - so maybe 40-50g carbs per day.

I hope you do manage to get rid of the symptoms. I am low carbing for weight loss so calorie restriction and 5:2 IF but You wouldn't need to do that if you were to try it.

I can relate to you, OP. It's no fun. I've been struggling for 7 years and no light at the end of the tunnel yet. I have IBS-C. I've just started trialling Biomel (the shots) so I'll have to see how that goes. If not, I'll be on to the next thing. Just don't give up - keep trying! (And yes I've wasted lots of money trying different things through the years, just hoping something will work!!).