Just can not get a grip on my IBS symptoms

[Silverumbrella]

And it’s making me so very low and depressed.

I have had IBS for decades.
Its been and down to over the years, some years I’ve managed to keep it at a manageable level, other times it’s been quite bad but I’ve always found a way managed to find a way to settle it or it’s just naturally settled itself.

However, around 5 years ago the symptoms started to become more and more frequent and has now reached a point where I have symptoms daily, on/off all day and even wakes me through the night. I have IBS-mixed but more prone to IBS-d and a constant bubbling, gurgling, growling gut which leaves me feeling very nauseous and with a feeling like I need the loo, on/off all day.

I know it’s a condition which never fully goes away and it’s something to manage rather than cure yourself of but I can’t even get to a place where I can manage it anymore and feel so trapped by this condition. I hardly go out anymore, have the most plain, boring (low fodmap) diet, only drink water and hardly any treats. I am afraid to travel anywhere, go out for meals, theatre trips, the cinema etc. My life has become very small and confined. It affects my relationship with DH and DC as we do very little as a family now.

I appreciate there is also a huge mental health aspect attached to the physical but it’s seems a chicken and egg thing and I can’t break the merry-go-round.

I feel that I haven’t left any stone unturned when it comes to finding relief. I have had many gastroenterology appointments which are always fruitless as my gastroenterologist seems uninterested tbh.
I have had a colonoscopy, gastroscope, pill camera endoscopy, a ct scan, various ultrasound scans and lots of different stool tests.
I exercise, avoid all known triggers, I’ve had lots and lots of CBT and therapy, I listen to gut directed hynoptherapy every day. I have tried all kinds of meds and antidepressants (these make the gut issues worse!).
I have trialled probiotics, tried kefir, live yougurt etc…….with no relief.

No one fully gets its, most people tell me it’s all in my head and I just need to get in with life (Well yeah! That’s what I’m trying to do but effing well difficult when your digestive system constantly reminds you that’s it’s there!).

Is there anything else I could do or try, I am at the point of desperation?

I am hoping someone on here may have been through this and can give me some advice or tips on something that worked for them as I’m getting more and more despondent and feel my life is over.

I don't know if this has already been posted.

https://gutscharity.org.uk/

Have you ever had a breath test for SIBO?

@AriannasGuitarCase where can you get a Sibo test from?

@itstimeforme You can be tested on the NHS, although I think they still only test for Hydrogen type. I've also used this site for home tests

https://smartnutrition.co.uk/shop/sibo/

@AriannasGuitarCase thank you!

That’s the same for me too itstimeforme, I’m concerned I’m quite low on nutrients due to my limited diet.
Qbish I follow Zoe regularly and watch to their podcasts on YT, so very interesting. I would love to sign up for their project but sadly can not afford it atm but I try to take onboard what they say on their podcasts.
DollyTheFluffyOne I’ve been on a year long waiting list for one. Was booked for next Tuesday and the week after and had a phone call yesterday to say they can’t get hold of the pills so yet another wait!
Eyesopenwideawake I have done the Nerva app and the IBS audio 100, I also had face to face hypnotherapy last year but sadly none helped calm my symptoms. I did find it very relaxing at the time though so now listen to it every night purely for the relaxation in the moment kind of thing.
Thank you DollyTheFluffyOne
AriannasGuitarCase I have the Healthpath one to complete next week. Even though I know SIBO is difficult to treat I’m kind of hoping it will be positive because at least it’s something I can try and treat as nothing I’ve implemented for IBS has helped.
itstimeforme I have been lucky enough to get mine via my local NHS hospital. It’s the Healthpath one. It’s £165 via Healthpath.

Definitely acupuncture helped! Considerably - give it a go! I am curious though as to why you won't consider eating meat, eggs or dairy? You've tried the fodmap diet and excluding things - which obviously isn't working - why not try something different, such as a high protein low carb diet? It really worked for me. It's a bit trial and error - so I could eat bananas, and fresh dates, but no other fruit at all. Breakfast was 2 boiled eggs, or half an avocado and bacon - sounds bonkers but it really worked. Seriously, give the Atkins diet a go - it's not forever, it's just until you are better. What have you got to lose? You have to tackle this - for your sake and for your family's sake. And you can adapt it to suit you.

You have my complete sympathy. It is hard for non-IBS people to understand. My DH once said 'Have you still got that...?!' Grr.
I did low fodmap for a while. I found a few things that definitely triggered my gut - caffeine, fruit, artificial sweetener, a few things that helped settle it - rice, egg, but no major factors. I find it worse while on period so am now celebrating perimenopause. I also found that focusing on the problem really didn't help, in that the more I thought about it the worse I seemed to get. I try not to focus on it now and stopped reading up on it totally, got rid of fodmap books and just tried to distract it from my thoughts. It may well be coincidence, as well as menopause and avoiding caffeine/fruit, but I'm fairly stable these days with the odd bad day. Don't leave home without Loperamide! I find Shreddies underwear boosts my confidence no end, thus relaxing me somewhat when out and about or at work. Hope you get to a manageable state again soon. X

Epwell I will definitely look into acupuncture and see if I can find a local practitioner.
I can’t eat red meat as it’s gives me diarrhoea and acid (I also suffer from functional dyspepsia). I absolutely can’t not stand pork or oval products. Eggs and chicken really upset me for days (not sure why this is but it’s the same for my sister, my dad and was an issue for his mum, so some kind of weird hereditary thing maybe?). I eat can turkey and most fish but really just don’t enjoy meat in general even the ones I can eat. I’m also lactose intolerant and have had issues with dairy for decades. I have a super sensitive digestive system and many foods have upset me since childhood, for some reason. I have seriously thought of going low carb, higher protein as my friend is keto and says it ‘cured’ her IBS but I would struggle with this diet and the few high protein foods that I can eat. The hospital dietician advised against it as I am under weight and she said it could possibly cause me to lose more weight. I do have an upcoming dietician appointment with a London gastro hospital, I will discuss high protein low carb diets with him and see what he can suggest.

Thanks Spamchops it really is hard for non-sufferers to grasp, they seem to think it’s just a bit of a tummy ache, if only!
Weirdly, I seem to have become so much worse since hitting this peri stage. Do you take hrt? I’ve had several people tell me their symptoms became better on hrt then others says it’s worse.

I asked my GP to prescribe me codeine, and it works perfectly for me. The GP only prescribed me 100 tablets, and said he doesn't think this should be a long term solution. Kind of annoying as my IBS-D is very well controlled now. Not sure what I'm going to do when the tablets run out.

I am not on HRT, I am reluctant as I think hormones are a contributing factor in my case. If you are getting worse in this phase perhaps HRT would help :)

puzzled198 Would co-codamol work? My friend has just started this for her IBS and says it really helps.
Spamchops I’m seriously thinking of trying hrt.

@Silverumbrella so much great input here, I hope you find the answers you're looking for. I have a small suggestion - silica gel . I don't have IBS, I'm using it because I've buggered up my microbiome with antibiotics, but it has worked very well for me for the diarrhoea and gut reactivity. The label says also for IBS symptoms, so you could give it a go? I don't think it would get to the root of the problem but symptomatic relief is not to be sniffed at.

Thanks comeondover, I always have Silicol gel and also enterosgel in for when things are really bad, they used to help a lot but not so much when I used it a couple of weeks ago.

Decades I struggled. Now with low carb and a daily probiotic, I'm 'cured'.

I wish I'd know decades ago. All the pain and embarrassment.

My DH has suffered terribly with IBS but what has helped him has been cutting out ultra processed foods. I has made a big difference and it is surprising how much food it is in.

@comeondover I hadn't heard of silica gel, but I and convinced that my recent problems started when I had to take clarithromycin ( I think it was) for two weeks after a dental implants which really badly upset my stomach ( I cant take amoxicillin so I had to have those) . I have now ordered some..

@puzzled198 thats interesting about codeine.. I hadn't realised that used to be prescribed for diarrhea . I wonder if taking just one or two paracetamol/ codeine tablets each night might help ? .. I may try this .. (obvs I realise that codeine is addictive) .

MrsTerryPratchett this really is something in need to explore as I am hearing so many say they eased their digestive issues this way. When you say ‘low carb’ are you getting carbs from vegetables or do you still consume grains? I find the whole idea of low carb diets very confusing. My friend is on keto lives off eggs, cheese, meat, fish and a small handful of veg which is non-starchy and grown above ground. I also worry about losing weight too much as I am already underweight so would need to be careful. I do also need to re-explore the world of probiotics.
Panthereyes I avoid them too, they really make me poorly especially anything with artificial sweeteners added.

I was going to also mention bile acid malabsorption have you been tested for that?

@Laska2Meryls good luck, I hope it helps. I took it for a couple of days and it worked so well, I thought everything had resolved. So I stopped taking it. I was wrong, very, very wrong 😬 Now I've been taking it for about a week, not sure how long to give it. Am also taking probiotics now.

Well at this stage I am willing to try anything ! How many a day and what strength of tablet are you taking @comeondover .. ? Obviously given its addictive nature I want to take as small a dose as possible ...

I have been back on low carb now for almost a week.. things have slowed down a bit so am going to carry on.. Luckily ( or not depending ) I could do with losing some weight..

( Without tmi here, hopefully, I have been actually surprised that given the daily several bouts of diarrhea that I actually have gained a bit weight over the last two years.. but it could be that I reverted to a high white carb diet in the hope of bunging myself up)

@Laska2Meryls I'm taking the silica stuff twice a day, 1-2 tablespoons.

Thanks .@comeondover . I have ordered some of that now...

snapple21 I’ve been on the waiting list for over a year, eventually received an appointment for next week but they cancelled it a few days ago due to not being able to get hold of the pills. I now have to wait till at least end of the month, haven’t had a new date yet!
Laska2Merylsmy friend has just started co-codamol for her ibs, she says so far, it’s really helping. I’m just a bit concerned about getting addicted to it or becoming very constipated.