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?

Have you heard of post-infectious IBS? When I was looking into SIBO, I kept coming across articles regarding post-infectious IBS and stories of people suffering after bouts of food poisoning after holidays abroad and how rifaximin can help treat it.

Thank you.

Tbh, I don't really eat too many gf products as most of them are high fodmap, I never consume any kind of legume as they are one of my biggest triggers. I tend to opt for naturally gf foods like rice, so rice crackers and rice cakes etc.

I have tried so many IBS meds but they either do nothing for me, make me worse or give me other side effects. Mebeverine triggers my migraines and buscopan, for some reason makes my fingers go numb! I even had to avoid it as an IV with my colonoscopies. I take simethicone and charcoal regularly, they do help at times. Imodium helps when I am really bad.

I have a prescription for Nortriptyline and need to try that. I have tried several SSRI's including Citalopram and Sertaline but they made my IBS-d go into overdrive. I have been offered a SNRI, Duloxetine, not sure to try that or the TCA.

I do find exercise helps the bloating and pain. An hour walk with my dog and 45 mins on my exercise bike daily does ease things.

The stress is the hardest issue to deal with as it's really difficult to not feel stressed caring for my mum, I am still trying to work on that one, it's one of my biggest problems right now.

I wouldn't say I've totally beaten my IBS but in general it's been mostly gone for the last few years tbh. I developed it around the age of 17 and had to regularly take medication and miss things like school, uni, work, social occasions because of the diarrhoea it often caused. I actually think the tipping point for me was when I fell pregnant with DC1 at 24. I'm 30 now and have had the odd blip here or there, particularly in times of acute anxiety/stress causing the diarrhoea, but it's been extremely rare that I've needed any medication during that time and it's certainly not something that bothers me with any regularity or that I need to particularly consider or think about.

A family friend swears he’s cured all his IBS and gut issues with bone broth, (I think he’s also cut out all carbs), he’s drinking loads of the stuff.

He permanently has two slow cookers on making it so he has a constant supply.

Like lots of others, Kefir was the key to shifting all my IBS symptoms after years of pain and bloating etc. It took some getting used to, I have it in a smoothie to disguise the taste. Did have to work my way up to around 170ml a day for a while for it to make a difference- I now just have a maintenance dose of 100ml a day.

OP how long were you on Sertraline for? Ami was on the for anxiety and my IBS symptoms were much better when on it, but only after I got over the side effects (cramps and diarrhoea) which lasted for about 8 weeks. You have to persevere with it I think. Apologies if you did!

She many recommendations for kefir, I really do need to give this a go. I like the idea of putting it in a smoothie to disguise the taste.

I took the sertraline for just over six months but just could not tolerate the daily diarrhoea so weaned myself off. Wasn’t much better with Citalopram tbh, I don’t think I tolerate ssri’s that well.

Have just dipped in ,have you been tested for Coeliac Disease? Your symptoms are very typical of CD .

I have had a couple of blood tests for cd and biopsies were taken from
my stomach during a gastroscope which came back negative. I was also eating gluten when these tests were done so any sign of the disease should have been present at the time.

Not sure if anyone has suggested this already, but may be worth looking into Symprove.

Thank you. I have tried Symprove but it made my issues worse.

Have you tried vitamin b supplements ? I was prescribed b-complex and it has worked wonders. You might be able to buy it over the counter?

Sorry if you've mentioned it already. But cutting out alcohol completely was a game changer for me. Even 1 drink I would be on the toilet all night.
Drink peppermint tea often, take a probiotic daily.

Your diet you eat now, have you tried cutting out certain foods in that too. The radish for example would have the same reaction for me as onions..

No, I haven't but I'll try anything right now, thank you.

I am the same, alcohol goes right through me.

I haven't had any for at least 15 years and I have probably only had 10-20 alcoholic drinks in my entire life. I just drink water or mint tea as everything has artificial sweeteners in these days and they upset me too!