I have suffered from digestive issues for almost 30 years. In my mid 20's I was diagnosed with IBS. My main symptoms back then were lower gut problems such as bloating, gas, diarrhoea (which can come on at any time but most troublesome in the AM) and pain/gurgling etc. Since being in perimenopause for the last 6 years I also experience daily upper issues... gurgling stomach, bloating, acid, often with a raspy throat, cough, pain in stomach (feels gas related as relived with burping) and daily nausea, which I absolutely despise. The upper issues are becoming really troublesome especially the nausea, it feels like an almost permanent morning sickness.
Over these last 6 years I have seen around 6 gastroenterologists (mix of NHS and private), several NHS and private dietitians and I am currently under a neuro-gastroenterologist.
I have endured cameras up and down (two colonscopies in 2019 and 2023 and 1 gastroscope in 2019) and all kinds of scans etc. I have been checked for BAM, microscopic colitis, H pylori etc. All came back as ok although my bloods from last week shows my IgA levels are abnormal (GP wasn't concerned about this at all though google tells me this could be a sign of Coeliac disease?).
A few years back in desperation I spent a lot of money on a comprehensive stool test which showed gut dysbiosis (really not surprised at that as my diet is pretty restrictive), so I then asked my gastro for a SIBO test. This came back as positive for hydrogen sibo. He said he didn't really believe in the tests as they often give false positives, he then left the NHS and I was referred to a different gastro, she is of the same opinion (my neuo-gastro is also in agreement) but she gave me the antibiotics anyhow but they made me feel worse.
I will add that I struggle with a lot of anxiety and stress. I have never handled stress well and have struggled with my mental health since I was a small child (I was diagnosed with adhd this year). Along with helping to care for my mum who is in the advanced stages of Alzheimer's (last month has been hell as she fractured her neck and the hospital stay has worsened her dementia), 6 years into perimenopause and constantly worrying about my gut symptoms with the fear of needing the loo or being sick has greatly reduced my quality of life. It's a horrible vicious cycle. I know my state of high anxiety is not helping my gut issues and that does play a part but I don't think it's 100% that because for 2-3 days per month, around day 8-10 of my cycle I have almost completely symptom free days, I do nothing differently on those days, my stress levels are still as high, I eat virtually the same foods every day so it can't be related to that. I am pretty sure my hormones are exacerbating things too. I literally feel like a different person on those 2-3 days per month, it's insane.
I have tried endless gut directed hypnotherapy (both apps and face to face) I am currently again trying hypnotherapy via the neuro-gastroenterologist, it's nice and relaxing but it never fixes the gut issues. I have had many cbt sessions. I follow a low fodmap diet and avoid all my known triggers, I only drink water. I walk my dog every day and do stretch/yoga moves every evening. I don't drink, smoke or take any drugs. I have tried various digestive enzymes and probiotics. I take imodium when things are bad, I take peppermint capsules every day, windeze type meds when needed. I have tried Rifaximin for the potential SIBO but they made things worse. I have tried various SSRI's for the anxiety but they made my gut issues worse. Amitriptyline also but they left me confused which scared me as they have a potential to cause dementia so I came off those. I have tried HRT but I suffer from hormonal aura migraines and they became worse on HRT.
I really don't know what else to try and I am getting desperate.
I am willing to even try alternative things. Can anyone recommend any natural supplements? My folate is only 3, I often wonder if that could be an issue (although GP isn't concerned about my folate levels at all). I have heard acupuncture could help but at £50-£60 per session I would really need for it to really help as I had to give up work last year due to my issues and helping to care for my mum, I really can't afford to throw too much money at this anymore.
Sorry, that really is a long drawn out ramble but I am getting so desperate, everything is really getting me down and all I want to do these days is sleep. Never thought my mid 40's and 50's would have felt so shitty (I felt great at 40, wish I could go back to those days)