How can I stop IBS/gut issues ruining my life?

[Twoweekcruise]

That’s how it’s feels right now.
Despite endless doctor appointments, lots of gastroenterologist visits, a colonoscopy, gastroscope, blood tests, scans etc. Fastidiously following the low fodmap diet, eating low and no gluten/wheat, no dairy for years, no fat/greasy foods, no alcohol, coffee etc (food has become very limited for me these days, there is no joy in eating), taking/experimenting with various IBS meds, listening to gut directed hypnotherapy and exercising, I never managed to control my symptoms for more than a day or two.
I have IBS mixed, so I can go days/weeks with more constipated symptoms to suddenly flipping to diarrhoea and loose stools (last Saturday just out of the blue I have explosive diarrhoea now tummy very unsettled).
My digestive system is never settled, it is always gurgling/growling, I have nausea (often mid cycle for some reason), acid, bloating and gas especially in the evening. Mornings are a nightmare.
And despite all of these doctor/hospital appointments and tests I worry continuously that it’s something serious especially as I am nearly 49 and worry the older I get.
I am seriously becoming almost agoraphobic over it now and only go out to do my very part time job (which I want to give up because of my unpredictable symptoms) and food shopping (for my family as food has no appeal for me right now!). I don’t want to go anywhere and my social life has shrunk to nothing.
Has anyone else been in this position? What have you done/did to get relief help you live a ‘normal’ life.
From where I am right now, it’s a miserable existence.

Hi @Twoweekcruise.

This is the nutritionist I consulted with

www.sarahflower.co.uk/book-online

There's a free 15 min chat available to see if you want to pay for a full consultation which is £95. I saw Sarah via zoom and then a report is issued with recommended products which I bought from amazon.

@twoweekcruise - I got referred to a gastroenterologist and got told it was just ibs. Got a test done privately, and then nhs accepted result and gave me antibiotics. But - it wasn’t enough so I bought natural remedies too - it’s probably not worth shelling out for the test unless you want to force gastroenterologist to treat it. There are lots of advice sites which will give you really good info on what herbals you need and they are just as effective as antibiotics.

As well as increasingly bad IBS I was diagnosed with fibromyalgia and cfs, both of which are gone now so you may find it resolves more than your IBS.

@twoweekcruise please tell me if I'm overstepping but depending on your age are you on the pill at all? I found that i was suffering the same as you and absolutely miserable. Followed FODMAP had every test one and nothing worked. Holidays were a nightmare foodwise and always needing to know where toilets were, embarrassment at work for running off the toilet etc never attending events and things due to it.
I then stopped taking the pill and my symptoms have completely gone after a few weeks. No severe stomach cramps, running to the toilet with diarrhoea no constipation, no nausea Ive literally got my life back! I did it for over a year and then decided to try back on the pill and within days all my IBS symptoms returned and thats the only thing that had changed.

I've had IBS a long time. Mine is related to gluten mostly. But just wanted to say I had huge problems from January to the summer last year with an upset stomach. It may be coincidence but since using a water filter (jug thing you change a filter on monthly) it has gone away. It may be coincidence but I'm carrying on with it.

Expensive probiotics cured my "IBS". I then realized that it started after a course of antibiotics. I suffered for five years. Two months of probiotics cured it completely.

Last year I had to have antibiotics again. I got the same issues again! I tried cheaper probiotics first, but they made no difference. Bought the expensive ones again and they tidied up the digestive issues within a fortnight. Not all probiotics are created equal!

I think IBS has many causes, and probiotics definitely aren't a fix for everyone. but if there's a chance that it could be something as simple as a poor bacterial flora, perhaps it's worth trying?

@Twoweekcruise I've been treated for SIBO on the NHS for the past 5 years so it's definitely possible. Unfortunately they're happy to treat it but not so good at working out how to stop it coming back! I had to do a lot of my own research and I've paid for a private test a couple of times as the NHS one only tests for Hydrogen type. I've a fantastic Gastroenterologist now, who says that the NHS is starting to take more onboard about SIBO, but still has a long way to go

I’ve been dealing with ibs since my early 20s (I ‘m mid thirties now) and got really really bad during a couple of years when I was living abroad. Not as bad as yours, but had terrible vomiting episodes plus constipation and constant pain. There was a moment in which I honestly thought I’d never be able to have a normal life again…tried fodmaps, no gluten, probiotics, tested for SIBO (negative) and nothing was working. Therapy helped, also going vegan (because I wanted to, not to make it better) also helped and I think that’s because I stopped having dairy products. But the heavy vomiting episodes continued every two months or so, and finally I heard about histamine and DAO deficit. I did a genetic test and turns out I have a genetic deficit of DAO enzyme, which means my body cannot handle normal histamine like most people do. I was prescribed a supplement before every meal and also had to make some diet changes (i.e limit foods high in histamine) and my symptoms have improved a lot. Just might be worth checking, hope you’ll get better!

@Twoweekcruise it's hard because food sensitivities or intolerances can occur anything up to 72 hours after you have eaten the food. You can also be more sensitive to foods when you have leaky gut or SIBO.

my DH struggled with ulcerative colitis in his early 20s and was at the point of needing surgery and stoma bag when he saw a more herbal based doctor in London who gave him slippery Elm powder. he swears by it. he has a cup of it every morning, some powder mixed in a cup of hot water. it's vile to drink but he just got used to it. he also takes very high concentration turmeric tablets.

Stress and certain food items flare up symptoms for him, gluten, lots of carbs, high sulphur foods mainly. but the main thing that affects it is usually stress.

and to add, following a generally plant based diet has helped as the flare ups aren't as bad. After being hospitalised ever year since first diagnosis, he hasn't been hospitalised for about 4 years now. roughly the same time we swapped to a plant based diet.

Blossomandbee I am very definitely sensitive to dairy and haven’t touched it for 15 years. It’s so hard when doctors down play our symptoms, my gut issues completely control my life.
MuthaFunka61 Thank you, I will definitely check her out, her fees are much more affordable.
Buttercup72 I will definitely push for more investigations into SIBO.
abbs1 I haven’t ever taken hormonal contraceptives but I have heard many accounts of women having gut issues whilst on them.
Albertinier I too wondered about our water and also got myself a water filter but sadly it hasn’t helped my gut issues but I do now drink many more glasses than I used to so it was money well spent!
Millie50 I have to admit that probiotics are something that I haven’t tried as I’ve always been scared they will make me worse. I should try though!
UpTheLaganInABubble Did they give you Rifaxamin? I was offered it via a private gastroenterologist but wasn’t sure if I should just take it or get the test first?
Twocrazycats I have wanted to go vegan for many years but always worried it would exacerbate my symptoms. I will look into DAO and histamine issues.
Lochmaree My nan used to swear by slippery elm. I should try it.

Hi OP

Sorry you are experiencing this. Haven't read the thread but wanted to share that DH has mixed IBS and one of his biggest triggers is stress. Fodmap seems to have helped but it took time as you have to tweak it for you.

Symprove has also worked wonders but it makes you feel worse before you feel better.

Eating fresh aloe Vera also helps as do peppermint tablets.

Hope you find something that helps make life easier x

Thank you zeddybrek I really need to look into experimenting with probiotics.

Op I have been like this for years. I am 40. A Dr told me to try eating Golden Linseeds, they have something in that releases a soothing gel type substance. This, along with cutting out Dairy and having a dairy free actimel every day has transformed my gut.

@Twoweekcruise Yes, I've had Rifaximin a few times, along with Neomycin or Metronidazole because I have both types of SIBO. Rifaximin by itself won't help if you have Methane type