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 will fast on rice, plain fish and mint tea when I’m really bad. I have tried fasting with no food but when I do then introduce food in I am in agony as I bloat so badly.

Thank you. It is a horrible vicious cycle which is so hard to break.
I do follow Dr B and the Zoe podcast, his YT videos are really helpful.
I found the Ch4 program really interesting and was hoping there may be a second series as I’d be interested to go on myself!

I’m so sorry you are experiencing the same issues, I do think my gynae issues are greatly contributing to things.
I do wish doctors would treat their patients in a more wholistic way.
I too would be happy to see the back of my uterus right now.
Good luck with your journey, hope you manage to get relief soon.

I really do need to look into dropping my carbs.

Yes I had exactly same experience.

Awful bowel issues and nausea so bad I would throw up regularly in the middle of the night and on waking. This went on for nearly twenty years!

And hideously painful periods so much so that I had eight days illness a month with vomiting, intolerable pain and bowel issues.

Turned out that I had an ovarian cyst and two large fibroids. And bowel adhesions.

Had a full hysterectomy and oopherectomy and all my bowel issues cleared up completely. I’m a new woman! Despite the fact that my gp, and my gynaecologist insisted that there is no connection between womb issues and bowel issues! Madness!

I wasn't quite as bad as you but I am much much better than I was and now only have occasional flares.
I am sure stress (work related) was a massive trigger.
I improved hugely when I stopped eating wheat - large amounts of dairy also sometimes problematic especially first thing in the morning so time of day seems to be a factor for me.
Lots of fibre has helped - sort of the opposite of what you would normally think of as a bland diet.
Chia seeds soaked in water added to breakfast - not sure if this is a bit of a placebo effect or is just about the fibre or something specific to do with the seeds themselves but it's not difficult or expensive so i don't really care and just keep it up.
Iron supplements helped when I had a really bad flare and wasn't absorbing well. Spatone. I felt much better even though it didn't make any difference to the actual digestive symptoms.
And yes to hormonal links - was better when pregnant and one of my worst flares was when my first child started sleeping through the night - combination of stress from chronic sleep deprivation and change in hormones from not night feeding any more.
Good luck, it's miserable!

As well as gynae issues being a potential trigger, I am certain that stress plays a very important role in IBS.

I had a friend who was caring for one parent with dementia and one with mobility issues and she suffered from terrible gastric and bowel issues which completely cleared up a few months after her parents passed away.

I hope you can find a solution op as it is utter misery for you.

I no longer had life debilitating effects for IBS after just 4 sessions of acupuncture. I haven’t had acupuncture for at least six months and the life debilitating effects haven’t returned but I do follow their advice of avoiding diary, sugary, greasy and raw foods. I did noticed your diet contains a lot of trigger foods including raw banana, cucumber, olives, radish, rocket and nuts.

The brand is Swanson. I think Barret and Holland have it, if not a Google search might help
There has been some research into it and it has been shown to help. I know she said she had normal bowel more the first time in years after taking for 3 weeks, but she takes it all the time now.
It needs to be 10billion cfu (should say on the jar). Amazon stock it but its double the price of other herbal suppliers.

https://pubmed.ncbi.nlm.nih.gov/33556972/

>Overall a very strong sense of what’s going on within my digestive system - visceral hypersensitivity.

I was the same. I think it’s autism. Made worse by chronic anxiety caused by many health issues (turns out I have M.E.)

Look into Kombucha to settle the gut bacteria. Look into the right one to get very carefully.

I truly hope you find some answers OP.

The commercial dairy kefir isn't fizzy. It's like a sharp yoghurt. Might be better to start with the Yeo Valley or similar?

Fizzy isn't nice.

Therapeutically homemade would be better & is stronger (it's what cured me) but there is no point in doing that until you know you can tolerate it and want to take it daily.

I can now get buy with supermarket stuff.

Apparently the bacteria converts the lactose in the dairy, so those who are intolerant to milk can usually have kefir.

This is good for information www.yemoos.com/blogs/yemoos-blog

Following for tips.
@kuime I have medication induced chronic constipation which I had carefully managed for years until recently. My diet consists of vast amounts of fruit, veg and fibre, prunes, oats, inulin, flax, chia etc. Enough to give most people diarrhoea.Several bouts of diarrhoea which is unfamiliar and it all went to pot. I'm trying to find the right balance again.
I never exclude anything but I don't eat bread very often and maybe I should for more fibre.

I sympathise massively OP as I suffer too. 6 years ago after the birth of my 3rd child is when symptoms really peaked and became debilitating. Lopromide was taken daily otherwise I couldn’t leave the house, while this helped it also came with negatives, so I now use it as emergency only. I have also had colonoscopies x2, FIT test, tried FODMAP, Low Carb, digestive aides, probiotics, lactase, antihistamines, low dose Amitriptyline and so many other things I’ve haven’t listed here.

My IBS is mixed but leans more towards D which I feel makes things more complicated, medications/diets etc are usually targeted to either C or D but never both.

I have noticed a definite hormonal link, and certain times during my cycle are typically worse than others. I’m sterilised now so no contraception interfering with things. The start of my period is usually the worst for symptoms. I have literally just had an ablation (for a different issue) and do wonder if this will have any effect.

Having a limited diet really doesn’t help either, it can be really difficult to eat a balanced healthy diet when fruits/vegetables/legumes are triggers.

My symptoms have been somewhat better for around a year, this is simply down to developing a thyroid issue Hashimotos Hypothyroidism which means I lean more towards C now which is a bit easier to deal with but D will always appear around my period or with trigger foods and of course stress. This is of no use to you I realise.

Stress is a huge factor for me, when my IBS really kicked off and became unmanageable I was dealing with MIL with Alzheimer’s and FIL who’d had a stroke and became wheelchair bound, running a business and I had just had a baby along with 2 older children. When FIL and then MIL passed away I had some symptom improvement, then with the Covid lockdowns and not needing to worry about leaving the house I had a bit more improvement. However when you are going through it, like you are now and there is just no way to reduce the load or stress it was absolutely awful and I just cried a lot…in the bathroom of course.

I know I haven’t really answered your questions, I haven’t been able to tell you anything your don’t already know. My only advice would be that your IBS definitely seems endo related and in your shoes I would be considering a hysterectomy if you have completed your family.

Most of all though I replied because I just wanted to sympathise with how monumentally shit this is to deal with and I am so incredibly sorry for all you are going through and dealing with, IBS, Children and Elderly Parents, Work, Home and all the rest, I have been there and know how hard it all is. Have a big unmumsnetty Hug 💐

Oats contain a protein similar to gluten so you may be causing problems with the oat cakes. Some people who can’t eat gluten are fine with oats, in others it causes a similar reaction to eating gluten. In fact, if you’re eating brown bread and seeded crackers and lots of uncooked veg/salad that may be too much fibre for an IBS-d system to cope with.

Taking omeprazole for a separate issue sorted out my IBS.

I also finding eating too much 'heathy' foods causes cramps and diarrhoea.

Bland, beige food suits me best.

My homemade yoghurt was started with kefir yoghurt (biotiful), forgot to mention that

I’m another one with a parent with dementia. I’ve also got a young child, a stressful job and marital woes. It’s so, so hard and though I seem to manage the stress mentally, the stress affects me physically and my digestive system seems to have fallen apart. I find this thread very comforting in a weird way, knowing that I’m not alone in this.

Hello this could be my history my IBS was triggered by our honeymoon to Egypt.

I’m sorry I don’t have a real answer I need to be near a toilet at certain points of the day.

if I have high fat I know I’ll need the toilet quickly. As soon as I eat breakfast I’ll need the toilet. It’s awful, the flatulance really gets me down. I wonder when I’m older if I’ll just end up shitting myself.

I'm taking omeprazole for a gastric problem. I suspected it was contributing to constipation.

That's terrible, why on earth are they not taking our symptoms seriously?

I would like to try acupuncture, I have had so many people suggest this that I need to have at least a few sessions.

I find that no matter if I eat raw or cook veg I still have issues, I have experimented with all kinds.

Thank you so much, your experience is very much like mine.

I have to say that I felt so much better during lock down, not being at everyone's beck and call reduced my stress so much, my stressful life atm is most definitely contributing to everything.

My gynae won't even consider a hysterectomy until I have had the laparoscopy and even then he was going out of his way to put me off during my consultation a few months ago.

Tbh, I don't eat oat crackers that often and don't eat plain oats at all. I mainly stick to gf crackers and rice cakes. I peel all the veg I eat and eat very small portions (this is all under the guidance of my dietitian). I don't eat any bread or anything seeded. My diet is very low fibre.

I am so sorry you are on a similar journey, it really does take it all out of you doesn't it? You have my complete sympathy

I think the trouble with IBS is because it's an exclusion diagnosis it's ultimately driven by different things in different people so it's hard to work out what will help you.

For me, reducing stressors in my life was definitely one of them.

I was really very unwell for some years. I eventually got it mainly under control with a combination of things:

1. Totally excluding legumes. I know you've excluded wheat and dairy but I probably wouldn't unless you're certain they're what's disagreeing with you. I find lots of dairy and gluten substitutes are actually much worse for me than the wheat and dairy because they often have chickpea or lentil content.

1. Religiously taking medications - specifically mebeverine and omeprazole - I have been able to stop this now but i think stopping the spasms from starting is really important.

1. I also hate kefir but I quite like kombucha - so maybe try that? It's definitely another marmite fix - a friend with IBS was in horrendous pain after drinking some but I definitely find it helps.

1. Hormones under control - for me that means staying on the combined oral contraceptive, it gets much worse when I'm off it. For you it might mean hrt.

1. As above, stress reduction options, including fitting in a really decent amount of exercise.

I still definitely have IBS and sometimes (like today) something decides it doesn't like me and it makes it very unpleasant. But I'm at the point where I can broadly live life unencumbered. I do have a radar key and take it everywhere with me. I would also say, and I know this is really hard, that I have tried my absolute utmost not to let it shrink my life, because the smaller it shrinks the bigger your stressors become in comparison to the rest of your life - if that makes sense? So I definitely adapt my life (radar key, toilet planning, always have an entire case of drugs with me) but I do try not to shrink it.

Amitriptyline or similar is definitely worth a go. It didn't agree with me but it does with some people. I also visited a doctor a while back who has a special interest in this and he said if it got bad again I should try an SSRI (I think, might have been SNRI, I'll check) as that can have an effect.

The other thing I would recommend is simethicone/windeze. One of the most effective drugs I've had for the pain side of things. Mebeverine helps if you've got churning but simethicone helps you to pass wind which is the main cause of pain in my experience.