So depressed knowing that my life will always be dominated by my disruptive digestive system and nothing I’ve thrown at this has worked.

[Roselilysnowdrop]

When I was first diagnosed with functional gut disorders (IBS and functional dyspepsia) almost 30 years ago I always had hope that things would get better the older I got but sadly that just hasn’t been the case.

Despite endless tests nothing has been found and after many years as her patient my gastroenterologist has now discharged me.

Things really aren’t improving as I age at all, in fact perimenopause and life’s stresses at this age have exacerbated everything.

I find it so deeply depressing that despite spending all my spare money on private doctors and tests, endless dietitians/nutritionists appointments, all kinds of supplements and foods/diets, CBT therapy, hypnosis, counselling (you name it, I’ve probably tried it), I am worse now than I’ve ever been. I only work 8 hours a week these days because of my issues which leaves me tight with money and even more low.

Because all tests are clear no one really takes this seriously yet my days are dominated by intermittent symptoms throughout the day- horrible nausea, burping, bloating, lots of uncomfortable gas, gurglings, feeling horrible after eating and therefore not enjoying food one little bit, and a very unpredictable bowel which means I could need the toilet at a moments notice or can flip the other way and struggle. I also seem to have developed a strong gastro colic reflex so can sometimes need the loo soon after eating which makes eating out with family and friends a nightmare.

I feel that I treat my body kindly, I am slim, I exercise, get 8 hours of sleep every night, drink only water, follow a careful diet by avoiding all my known triggers (dairy, wheat/gluten, certain gas forming foods and all low fodmap). I am very careful with my fibre intake also because the slightest increase has me dashing to the loo, same with fat/greasy foods and artificial sweeteners. I’ve kept a food and symptom diary for years and can’t really see many connections or patterns to how my body reacts every day.

No doctor will look at me in a holistic way, will not look at my other issues and connect any dots, I often wonder if my issues may be connected. I’m always utterly exhausted, blood tests are all within range and ‘normal’ so maybe the tiredness is more psychological? I was diagnosed last year, at the age of 52 with inattentive adhd but have not really looked into this much everyone I’ve told have just rolled their eyes and said everyone seems to have adhd these days so I’m kind of embarrassed about it all tbh and as a consequence I’ve shelved my thoughts on this and kind of wish I’d not bothered with the assessment. I did try adhd medication but as usual it made my digestive system worse than usual. I’ve tried endless antidepressants but they all upset me, I’m currently on low dose Nortriptyline but it’s far from ideal for me.

The only thing that I’m clinging on to some hope over is the fact I have had gyane issues most of my adult life and was diagnosed with adenomyosis a few years ago. My uterus is also very retroverted and my latest mri looks (to my very untrained eye) as though it sits on my lower bowel and I’m wondering if this could be causing any issues? (Happy to upload the image if anyone could give me their opinion?). I’m due a hysterectomy in a few months and am living in hope it may help but I’m dreading the surgery so not too optimistic about it all, my gyane won’t even discuss my digestive woes, he says they have nothing to do with my gynae issues?!

Sorry for such long ramblings but I wonder if anyone could relate and if they ever got over this (physically or mentally).

Have you been tested for Bile Acid Malabsorption?

I wonder if your stomach acid is low, has that ever been tested? Also did you get thyroid labs done - often the thyroid malfunctioning is behind many apparently unconnected symptoms, and the ranges used by labs are too wide and indicate you are 'normal' when in fact you may have an underactive thyroid. Worth looking into.

I have, I had a sechat scan a couple of years ago which came back negative for BAM. I’ve had two colonscopies, three gastroscopes and a pill camera endoscopy.

I’ve always been told my thyroid is within range, it was last tested a few months ago. My Serum TSH was 1.47 and Serum free T4 13.6 and both signed off as needing no further action.

I had PCOS and a very retroverted uterus. I used to have uncontrollable diarrhoea, pain, cramp, mucus etc. I was diagnosed with diverticular disease and adenomyosis also. PCOS went away after weight loss surgery. Recently I had my ovaries removed and the adhesions were removed, very severe. I still get diverticular flare ups occasionally, have 2 weeks Flagyl and Suprax on standby and it clears. The surgery wasnt for bowel symptoms but has definitely pointed to years of PCOS and diverticular causing adhesions and I am sure the uterus position didn't help.

That's very interesting. I paid privately for an MRI recently and I've never been able to look at the images of my previous NHS ones but looking at it now I'm sure my retroverted uterus must be causing at least some issues.

Has someone checked for a SIBO ? You’ll like have to go private as a lot of nhs trusts don’t or won’t do it.

Do you know the range used for the T4 measurement? From the range I'm familiar with 13.6 is very low. But you need the range to be sure. TSH is OK, but you might be one of those people whose TSH doesn't respond to a need for more active thyroid hormone (known as 'central hypothyroidism'). Trying to prove that though will be pretty difficult.

Hi. Long time lurker here. My husband suffered for years with ibs. Had all the tests and whenever we went anywhere he checked where nearest loos were. About 4 years ago, he was prescribed Amitriptyline for something unrelated and it’s changed his life. One of the side effects is constipation as it slows the guts down but it’s helped so much with his ibs.

It could be your womb issues. Mine is caused by that, as agreed by the specialist gastroenterologist I saw.
Off for another bloody hysteroscopy later this week, I want it out now. I've had multiple polyps/fibroids, have another one now. The gastroenterologist said the the womb is a very inflammatory organ and was actually doing a UK wide study on women's hormones and their relation to IBS.
Everyone always thinks gut issues are diet related, they often are not, especially in women. Doctors are really bad at looking at you and your issues as a whole, always trying to treat everything separately when they're often all related. No body part works in solitude! They are all connected.
Please come back and let us know how you get on after your hysterectomy and good luck.

I had IBS for years. I was given a 5 day course of steroids for a chest infection a couple of years ago and it stopped. Looks like they reduced inflammation in my stomach and bowel.

I would not ignore the adhd aspect. More and more evidence of links between gut issues and neuro-divergency. Also, try antihistamines.

That's really interesting. Last year I had a flare up of IBD, my first in 20 years. I was given a 30 day course of steroids and recovered within a couple of days (amazing!)

But the surprising thing was that during those 20 years of no IBD flare, I'd always had a sensitive stomach, reacting badly to wheat (I'm not coeliac), reacting a bit to grains in general, also beans, garlic, onion and sometimes dairy. Basically I was often bloated, windy and uncomfortable.

Since the flare and steroids it's all settled down like a calm sea, I can even eat gluten and nothing happens!

This might not be helpful to OP though. OP I really hope it turns out to be triggered by gynae issues that can be resolved.

My husband was having his life ruined by IBS and one call with a decent dietician changed everything. The answer (for us) was that not all fibre is the same. He needed to be getting much more soluble fibre - the mainstays being oatmeal daily and inulin fibre gummy supplements. Meanwhile he avoids all insoluble fibre including any leafy greens and almost all raw veg. The veg he eats is pretty much only well cooked peas, carrots, broccoli and cauliflower now. It’s night and day now really. He makes sure he gets some soluble fibre with each meal and if not takes a supplement. All the best, I know how awful it is.

Have you tried fasting to reset your system? I mean water fast for a few days then slowly introduce a bit of fruit, veg etc. It’s not easy but could be transformative. If you’ve got the funds, then look up residential fasting retreats where you can also have spa treatments and go for walks. Far easier than doing it home.

I did do one about 18 months ago but it was clear. I did also do a comprehensive stool test which showed dysbiosis.

Thank you, I know little about thyroid issues even though my sister has them.

My serum free T4 was 13.6 pmol/L (range 12-22 pmol/L).

I do take low dose Nortriptyline, I does help somewhat with the urgency but sadly hasn't had the effect I had hoped. I noticed a lot of people on the IBS groups said Amitriptyline was a game changer for them, I tried that but it gave me awful headaches so my neuro-gastroenterologist prescribed Nortriptyline which solved the headache issue. I was really hoping it was going to be a wonder drug for me, I've been on it 4 months, maybe it gets better with time? I keep taking it, just in case 🤞

Did you husband feel better quickly or did it take some time? I started on 20mg but that made me super sleepy all day so I now take 10mg in the evening.

Thank you. I really do wonder if this is causing most of my issues.

I took have had to have several hysteroscopies to remove recurring polyps, always told they'd never come back but they always did. Think I've had 5 hysteroscopies so far and a day surgery case where they couldn't get to the back ones because my uterus sits so far back.

I really wish they would study this more. My endo gynae absolutely refuses to acknowledge my gut issues are related which is beyond frustrating.

Good luck with the hysteroscopy, hope all goes well.

That's interesting, do you know the name of them, I'll research it.

Thank you, I'll try the antihistamines.
I know people with autism often have gut issues but in saying that's I often believe I have autism, probably more so than ADHD but I'm not putting myself through another assessment.

@Roselilysnowdrop try increasing the nortriptyline. Take a second tablet every other night if you want to be cautious. It’s been transformative for me, too.

I have found the sleepiness less and less noticeable over time. You definitely become less impacted by the side effects. I really miss the sleep support 😁

I feel your pain. I have had IBS for many years, worse in menopause. Like you episodes of having to rush to the loo while still in a restaurant. Haven’t had anything like as many tests as you but let myself get more and more restricted in where I would go, when I could eat. Later on I was referred to rheumatologist and diagnosed with a connective tissue autoimmune disorder and digestive issues are common with these conditions so may have been part of the issue all along. It is never going to leave me, I have done a lot of challenging myself to not restrict my life, the more I do this and relax the less inclined my IBS is to flare. Yoga has helped me both physically and mentally.

Also hypermobility which is all linked.

@eatreadsleeprepeat how was this diagnosed please? I'm having endless tests that find nothing.