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?

Sadly no. I’m perhaps slightly luckier that my symptoms are not as debilitating as yours and don’t affect me every day, just most days and I have flares that last anything from a few days to two weeks. Nothing helps to resolve them, I just have to wait for it to pass.

The only real difference I’ve found is from fasting, but the relief is temporary and on eating again for get quite severe rebound symptoms. I’ll probably end up trying the amitriptyline again, after the most recent flare a few weeks back which totally ruined a trip to see family. For something that’s essentially “functional”, the misery IBS causes is horrendous. I’d give anything to be free of it.

I have severe IBS and coeliac disease, has your gastroenterologist referred you to a dietician? Mine has been a godsend. I’ve cut out all gluten, dairy, carbonated drinks and caffeine. I also keep my fibre intake low as this is a massive trigger for me. Could you post your typical diet and someone on here might be able to spot something for you? I also think you try the medication, I’m so sorry you’re going through this 💐

Agree, your gynae issues should not be dismissed. I have a lot of similarities to your history. I found the Gut and Psychology Diet hugely helpful. It was quite a lot of effort initially, but worth it.

Gut and Psychology Syndrome Diet: https://amzn.eu/d/5UAv3fh

I had dreadful IBS for many years.
Low FODMAP diet helped dramatically but wasn't sustainable long term.

I did sort it out using kefir. I made my own and took it daily. I can mostly eat what I like now though I still avoid plums. I use supermarket kefir now.

I would try eating kefir daily. Fing some grains & make your own. Use Yeo Valley in the meantime. Even lactose intolerant can eat kefir. Have a google around kefir for more information.

It truly changed my life after many years of misery.

Good luck.

I have iBS and endo.

I had endo deposits on my bowels which did not help.

They absolutely can interact.

Lasering the deposits helped.

I was also going to suggest this. I was in it for back pain and it’s the only time my IBS was manageable. I did t make the connection at the time but I’m about to ask my GP to prescribe it again.
I feel your misery OP. It’s so hard.

Try the carnivore diet. You will dump oxalate really bad at first but cling on.

Start out with the lion diet. Beef and salt and water for a month and then add things as you feel you can.

Failing that, Chinese medicine.

Have you tried CBD oil? I started on it a few years back to try and manage pain and it helped for a while. Worth a shot if you haven't tried it.

I experience the same, they wreck my stomach. I don't consume any.

Firstly, I am sorry to hear you are having to deal with so much. I have suffered with IBS for years and understand how miserable it can make life - and that’s without the worry of caring for your parents, and the endo that you’re coping with.

One of the really maddening things about IBS and similar conditions is how it’s so linked to stress but also the symptoms themselves then massively exacerbate stress! I have found psychotherapy and anti-depressants very helpful for my mental health, if not particularly my IBS!

I’ll share my experience of improving my gut symptoms, with the caveat that I’m more on the constipation side of IBS-mixed. But was still getting frequent diarrhoea - which can actually be a consequence of chronic constipation. Apologies in advance for the length of this!

Basically, I had been following a version of low FODMAP (plus many not very effective other remedies) for many years, but symptoms kept getting worse, my diet was so restricted and I felt guilty every time I ate anything not strictly low FODMAP.

The game-changer for me was finally speaking to a GP with an interest in this area. She stressed the importance of getting my gut working properly again and getting a more varied diet with plenty of fibre. I had a course of cosmocol to basically clear out the build up of years of gut dysfunction. This takes a while and isn’t that pleasant but eventually led to me having my first “normal” poos in years!! The second key thing is eating plenty of fibre - I have to be really mindful of getting enough each day and limiting things like refined carbs and processed food. And also eating a big range of grains and plants. I had become so scared of lots of fibre-rich and healthy foods because of FODMAP and symptom fear, but this can really worsen gut dysbiosis - you need all these foods for a healthy flora and good gut function. Building up my diet over time in combination with the Cosmocol to reset things has really, really helped. I’m not symptom free and do still have flare ups, but rather than responding with a super limited, low fibre diet like I used to, I focus on keeping up with a varied range of foods and it passes. I also have a stock of cosmocol I can use if necessary and take a daily probiotic.

It's a very individual thing of course, but wanted to share my experience cos I find lots of advice focused on identifying and eliminating triggers or adding one particular thing to your diet, but I needed a more holistic approach.

Thank you.
I do need to look into low carbing.
My friend eased her IBS going keto. What has held me back trying is because high fat, red meat, eggs and dairy are all triggers for me so I think I would end up with an even more restrictive diet than I already have but I wonder if cutting back on the carbs I do eat and increasing the proteins I eat would help?

Acupuncture worked wonders for me. I was doubled over in pain every day, this stopped immediately and my stools tightened up straight away.My acupuncturist advised me to avoid raw, greasy, sugary and diary based foods as these are hard to digest. Ive followed this advise and it does work.

I am so sorry you are struggling. I have constipation a few times a month and it is so painful.
Sounds a bit too simplistic but have you tried 2 kiwi per day? My sister was only going to the loo twice a week, I saw kiwi's mentioned on a support group and suggested it to her, it has really helped. It is also helping my dh as he struggles in that department too.

I really do feel your pain. Being constantly told it is 'just' a functional issue is of little comfort when it causes so much misery.

As soon as I finished the first paragraph of your post I thought 'I bet this woman has endometriosis on her bowel'. This is exactly the same story as me, I had an MRI and it revealed endo all over the bowel. Ignore your stupid doctor, endo can absolutely affect the bowel. When you have a laparoscopy, a gynecologist won't be able to remove endo from the bowel, they will have to have a bowel surgeon there too to do that. This is why you neeeed to push for an MRI before the lap as they need to know this!

Good luck OP, I spent years being gaslit by doctors over my endo. It's not on

Thanks Sleepychicken

I have seen many dieticians over the years. I currently see a private state registered lady. She has been quite helpful but it is a work in progress and I can not afford her follow up fees atm. I too follow a low fibre diet. She wants me to trial psylium husk but I have tried 1/2 tsp and ended up with awful gut pains. She also would like me to try the Nortiptyline.

Typical diet for me,
Breakfast Gf (homemade) toast with 1 tsp almond butter and a banana
Lunch Gf crispbread or oat crackers with turkey or salmon, cucumber, olives, radish, rocket
Dinner Roast salmon or cod, steamed carrots, new potatoes.
Snacks Clementine, square of dark chocolate, 5 almonds etc
Drink Water or mint tea

A very plain and boring diet, wish I could eat as my friends and family do.

Hi op

What a nightmare for you. So I've had wide excision surgery for endometriosis which I've had my whole life (now 49)

I'm not sure why HRT is off the cards for you, I'm able to take low does patches and the continuous progesterone, that helped my gut issues massively.

Also diet wise there is a correlation with endometriosis and high histamine levels, have you looked at low histamine and low inflammatory foods. And potentially taking a histamine tablets daily.

You could find you have some endometriosis on your bowels that's causing all of your troubles.

Have you had your faecal elastase tested?

I have exocrine pancreatic insufficiency, which developed partly in response to a period of extreme stress.

I would not discount the SIBO. Lots of doctors don’t really think it’s an issue, but I know people who have severe symptoms from it. It’s not uncommon to have pancreatic insufficiency along with SIBO.

I would focus on your stress levels. Honestly, more than diet, it’s the thing that causes flares for me. I had to make significant lifestyle changes and cut out some toxic people to help me really get a handle on my symptoms. Medications won’t really fix that alone unfortunately.

I’m aware you might immediately discount this as most people do. But I strongly believe that lots of chronic health and chronic pain issues are rooted in stress/ psychological issues, including IBS. There are a few guests on this podcast who have had severe IBS and overcome it through mind body work, you might find it useful to listen to those episodes. It’s sad that you’ve restricted your diet so much and it really might not be necessary to go that far.

Also, have you done the Zoe programme? It’s expensive but you might find it interesting to get an insight into your gut microbiome.

Thank you CeruleanDive I will check that out.

Thanks RobinEllacotStrike My dietician has suggested kefir, I have coconut kefir in the fridge, it is an acquired taste and im trying 1/2 tsp a couple of times a day, can't say I enjoy it one bit but I keep my fingers crossed.

Octavia64, I really do think this is not helping my gut issues at all. Just wish I could get this lap done asap. I did enquire privately but it is £7500 and I just don't have that kind of money so will have to sit on this long NHS waiting list 😕

AquaFurball I have but sadly it didn't help.

Thank you Kuime that is really helpful.

Ftctvycdul It isn't the first time it has been suggested to me, I really need to look into this. Can I ask how many sessions you needed? Money is quite tight atm due to not working much because of my issues but I would borrow the money if I thought it would help.

Thank you Ws2210 it was very frustrating when the gynae wouldn't even discuss my gut issues or the possible connection and this is supposed to be the top endo gynae at our hospital which is also an endo specialist centre. I have had the mri in December 2023, it has shown deep endo, diffuse adeno with nodules in the pouch of douglas but nothing on the bowel. The gynae says if he sees any endo on the bowel he will stop the lap and I will need to have it done again with a bowel surgeon present!

Thank you, that is really interesting. I have found a local private gynae who specialises in menopause and hrt. I am thinking of getting an appointment with her and asking about a low dose hrt.

I am following an endo sufferer on IG and she has been doing the anti-inflammatory diet all year, she has had great results. I need to look into that and the anti-histamine diet, see if I can do a combination of the two.

I don't believe I have had a faecal elastase test, not sure if this was tested during the comprehensive stool test that I paid for last year, I will check on the results of that.

I do believe my stress levels are having a huge impact on my overall health, I feel wound up and stressed every day yet nothing calms me. I do need to work on that, somehow. Not helped with the issues with my parents, that causes my sister and I a huge amount of stress and unfortunately it's not something easily resolved.

100% agree that my stress and anxiety is having a huge impact on my health. I try everything to ease it, literally spent a small fortune on CBT, counselling, hypnotherapy etc but having my parents just around the corner with mum suffering dementia is breaking me and I am just not able to cure any of my stress levels whilst they are both suffering. It is an awful catch 22 situation. I truly don't know what to do about that but appreciate it is not helping with my poor health.

I would love to join Zoe, I follow on SM but just can not afford it.

While it's always good to introduce kefir slowly you need a lot more than that to be effective. I would say a cup a day.

Can you try dairy kefir & treat it like yogurt. I have mine with fruit and muesli or nuts. Or I drink a glass but I like sour things.

Or put it in a smoothie with berries & mask the taste.

Honestly it's worth persisting with. It cured me after years of misery & pain.

As long as I don't go too crazy on high FODMAP foods, avoid supermarket bread, go easy on stone fruits and take kefir regularly I can pretty much eat what I want now.

Kefir turned my life around. I drank a bottle of 300ml everything I had a flare and it was like throwing water on the fire. I then got rid of all ultra processed food from my diet. Took a good six months and now no flares or bloating for the last 6 months. Seems to be effective. I have also reduced the stress in my life which also helped.