I have had IBS for over 25 years. It has been up and down during that time, it has never gone away but I have had bad times and more manageable times.
However, around 5 years ago, at the age of 45, everything went haywire. I am 50 now and very rarely do I have a good/symptom free day. Weirdly, if I do have a good day it will be towards the end of my period (I will experience about 2 ‘good’ days on day 7 or 8 of my cycle).
At the beginning it was just lower digestive woes but now all of my digestive system is now involved. So I will suffer from upper issues such as nausea, excessive burping, gurgling, acid like indigestion/discomfort (these symptoms seem to represent the most during mid cycle).
I have lower gut issues which show up as excessive gas, gurgling and bloating in the evening to the point that I look pregnant and the excessive bloating is so painful.
I have zero appetite due to these symptoms.
I have a horrible time every morning (and dread getting up).
I absolutely promise I am not a poo troll but am desperate for some respite but (maybe tmi but…..) I have urgency as soon as I get up and pass what I can only describe as soft, sticky toothpaste like poop which is weirdly hard to pass. I often have to go 2/3 times in the morning and am left feeling like I need to go all day. It’s a horrible disconcerting feeling when you just want to live a normal life and not being dictate to by your angry/upset bowel. My guts will also growl at my all bloody morning long!
I have had endless tests over the last few years. A colonoscopy in 2019, a ct scan that year too. Last year a pill camera endoscopy to check my small intestines. This year I had an exacerbation of these symptoms so ended up having another colonscopy in July with biopsies for microscopic colitis. I had a bile acid study which came back clear and also several FIT stool tests, a calprotectin test and stool test for parasites. I have also had my upper digestive organs ultrasound scanned!!
I drink only water, eat a low fibre, low fodmap diet and avoid my known triggers which are diary, eggs and a few other veg and fruit etc. My diet is extremely boring and plain. Probiotics and probiotic foods make things worse.
I hate food now as I see it as an instigator of my symptoms.
I have tried all the IBS meds and now take imodium once or twice a week (anything more and it bungs me up but not in a good way). Peppermint tea helps the lower gut issues but exacerbates the upper and PPI’s help the upper but exacerbate the lower issues 😩
I have spent a small fortune on hypnotherapy and relaxation techniques etc. All to no avail.
My GP and gastroenterologist have given up on me, as they have exhausted all tests and advice.
After years and years of asking my gastro if I have may possibly have SIBO (small intestinal bacterial overgrowth) and her saying no, I actually tested positive for this a month ago but during my consultation with her last week (in which she was over an hour running late so a rushed appointment) she didn’t seem interested in explaining anything about this issue and just said she will see me in 6 months. I now need to go on a journey to find out more regarding this issue (which will probably cost my more money!).
Does anyone have any experience of ongoing gut issue? Have/did you manage to get your digestive system back to a better place? I am literally on the verge of becoming agoraphobic as this is controlling my life right now. My guts literally rule my life.