I am really at the end of my rope with ongoing digestive woes, I can’t get my system to act normal and it’s really having a huge impact on my whole life.
I have had a very sensitive digestive system for 24 years, since the day I suddenly pooped myself at work. Nothing has been right since.
But during my 30’s it was mainly under control and only bad food or stress/anxiety, appointments etc would make it worse.
Since my mid 40’s though (been about 4/5 years) things have gone haywire and getting worse each year. This year my guts have been playing me up on an almost daily basis with only around 2-3 ‘good’ days per month. These days are bliss and leave me feeling normal again but it soon goes back to being bad and I have no idea why (I’ve kept a food dairy for these 4/5 years and can not see a huge connection to food).
Three years ago I had a colonoscopy with a gastroscope and a ct scan (all fine). I have had numerous ultrasound scans on both my upper digestive organs and my gynae areas - again all ok although I do have regular uterine polyps, very heavy periods and regular ovarian cysts (had an ablation in April).
This year I had a pill camera endoscopy and apart from some mild erosion areas in my stomach, which the gastroenterologist was not concerned about, all ok. I have had blood tests, tests for coeliac, h pylori and 2 FIT tests. I am awaiting a SeHCAT scan and a SIBO breath test.
My symptoms are upper and lower:-
Upper - Bad nausea, burping, bloating, excessive gurgling pain, acid (goes through to my back) - This all seems worse mid cycle for some reason.
Lower- Excessive gurgling, bloating (which comes and goes - some weeks bad, other times better), a stitch like discomfort in my lower right area, lots of farting sometimes and sometimes much less.
Basically, lots of activity in my digestive system like it’s angry, unhappy and unsettled.
I have urgency most mornings and (sorry if TMI) quite loose and toothpaste/mushy like poop. Very occasionally will switch to a day or so of constipation.
My 2-3 ‘good’ days seem to happen at the end of each period.
I have absolutely had enough of this - I’m so bad in the mornings and feel so uncomfortable, unsettled in the guts all morning and worried I’ll need the loo out and about although often it’s just once or twice a day that I go I get the feeling that I need to go all day. It has a huge impact on my mental health.
Often (but not always), evenings are more settled.
I have zero appetite because of how I feel.
I have seen dieticians and am low fodmap (been on it way too long as I’m now afraid of high fodmap foods), I’ve gone gluten free, I am dairy free, avoid all foods I know upset me, no artificial sweeteners, no alcohol - no life lol!
I have done lots of CBT, had hypnotherapy several times, meditation etc - nothing helps.
I have tried all the standard IBS meds, peppermint, probiotics, kefir etc.
Imodium helps to a degree but stops me going and as soon as I stop taking them I go back to the above symptoms.
I am really at the end of my rope with ongoing digestive woes, I can’t get my system to act normal and it’s really having a huge impact on my whole life.
The gastroenterologist can’t help, he referred me to a neuro-gastroenterologist, I waited over a year for my appointment only for her to tell me to take Imodium and that I have got to learn to live with it. I wanted to scream at her ‘What the hell do you think I’ve been doing for 24 years!’.
Has anyone else had anything like this? - I don’t know how else to carry on. I feel crap most days.