Would anyone like to join an IBS support thread?
It is such a common condition, one which (ime) non-sufferers have no idea just how much it affects our lives and imo not talked about enough.
I was first diagnosed with IBS 25 years ago, at the age of 25.
Over those years it’s been up and down. Some years ok, some very much not ok. I’ve tried many things to help, some helpful, many others not so much.
However, over the last 5 or so years my symptoms started gearing up again and the last 6-12 months it’s been pretty much daily and relentless. I have had lots of tests, tried endless meds, diets, alternative treatments etc but it is still with me, every bloody day!
The doctors and gastroenterologist always say it’s ‘just’ IBS which I know compared with many awful gastro diseases it is but I do find it very disparaging when they say ‘just’ as it’s never been just anything for me as it’s pretty much controlling my life.
So I thought I would start this incase anyone else is struggling and we can offer some support and advice to each other, maybe there are things you haven’t tried which others have and can suggest and vice versa or just go on here to tell each other that we understand what you are going through and have a place where we can vent and describe our symptoms (I know MN is very squeamish over any kind of 💩 talk and if you do you dare mention anything poop related you are accused of being the poo troll!).
So I thought I would list my symptoms incase they resonate with anyone and what I have tried and currently am trying.
My symptoms
Daily gurgling, bubbling and growling digestive system from stomach through to intestines and colon, this is worse after eating and even wakes me through the night. I hate this as I worry what it might lead to ie, is it just gas, movement or will I suddenly need the loo?
I need the loo as soon as awake and often go to the loo 2-3 times a day. I am mixed so sometimes diarrhoea, sometimes constipated and other times ‘normal’. It’s often like squeezing out toothpaste! I also suffer from incomplete evacuation which I hate
Often have a disconcerting feeling like I ‘need to go’ this is most inconvenient when out and about and often makes me scared to leave the house
Bloating, especially in the evenings- I’m slim but can look pregnant by the end of the day. The bloating can be quite painful too
Lot of gas - up and down
I also suffer from functional dyspepsia so have lots of nausea, acid, churning and burping
My menstural cycle and being in Perimenopause is most definitely NOT helping the situation
Things I do/take/have tried to help ease symptoms
I follow the low fodmap diet, avoid dairy, wheat and my known trigger foods, I only drink water, I naturally do the intermittent diet as I can’t face food until at least 11am
I listen to gut directed hypnotherapy every morning and evening. I have tried the Nerva app, the IBS audio 100 and have paid for face to face hypnosis but I now listen to free hypnotherapy on YouTube as the above didn’t really help and is expensive
I have tried various SSRI’s but they upset my symptoms even more. I tried Nortriptyline but didn’t have any luck with that either. I take mebeverine and peppermint oil at times (helps sometimes, other times does nothing), I have tried probiotics, dairy free live yogurt, Kefir (🤢), fermented foods etc but again not much luck with those. I am thinking of trying probiotics again though
I walk the dog for an hour every day and try to do this briskly as any other ‘hardcore’ exercise makes me need the loo (I do seem to have a very super sensitive tummy!)
My hot water bottle is my best friend, I find this really helpful but obviously not so much in this heatwave and talking about hot weather, that seems to make my symptoms so much worse - anyone else find this?
Tests
I have had lots of tests over the years. In 2019 I had a gastroscope and colonoscopy, a ct scan and ultrasound scans. Last year I had a pill camera endoscopy. I have done several stool tests including calprotectin and the FIT test. They have all come back as ‘normal’
This year, as I am on an never ending quest to conquer this condition, I paid a ridiculous amount of money for a comprehensive stool test. It came back that I have lots of strains of unfriendly bacteria (not a surprise as I have such a boring and unvaried diet), candidia and dysbiosis. The company didn’t offer much help other than take probiotics which made me worse (if anyone has any advice on this or can suggest a good probiotic I would most welcome the advice) In retrospect I should have worked with a naturopath but can no longer afford this.
I have seen a few NHS dieticians who suggested the low fodmap diet but didn’t really offer too much support or advice, I have had to do this myself.
So that is my experience with this condition. I won’t lie, I do suffer from a lot of stress which I know does not help. I am a naturally anxious person but it’s a bit of a chicken and egg situation, yes stress makes issues worse but the more I suffer from symptoms, the more I stress about the symptoms - arrgghh!
I just wonder if this may be helpful for any other IBS sufferers and what your issues are, if you’ve managed to get a grip on them, what you’ve tried, what works for you , what doesn’t etc? Or if you simply want to vent because your symptoms are getting on top of you and you aren’t getting anywhere with any health professionals or maybe you have a great doctor etc and can pass on their advice which would be most welcome.
I am hoping this may help someone as I know it’s quite a lonely condition as let’s face it, we can’t freely discuss our bowel habits with all and sundry?