Probiotics causing horrible diarrhoea - should I persevere?

[Toodlesbean]

I’ve suffered from IBS symptoms for a few years now and if anything they are getting worse as I get older.

Ive had blood tests, stool tests - no issues have been found so it’s labelled IBS.
My problems are loose, yellow orange stools, wind, acid reflux, I can go to the loo up to six times a day.

The mornings are generally worse and I improve through the day. Triggers appear to be red meat, tomato based sauces, onions, garlic, possibly milk products and possibly pasta.

it’s so difficult to work out exactly what the problem is as some days I’m fine others I literally can’t get off the loo.

Ive had multiple poo accidents and I’ve only gotten away with it in work by the skin of my teeth on a few occasions and at some point I’m afraid I’m going to have a catastrophic diarrhoea episode and really embarrass myself. once it starts I cannot control or hold it in.

this week I decided to try and get to the bottom of it .I switched to lactose free milk, gluten free wraps to try and at least cut down on these to see if there’s improvement. Two days ago I also added a 20 billion culture probiotic daily to see if that would further help as I’d seen a bit of an improvement reducing gluten and lactose. 2 days of fine but today oh my god I had a sharp pain in my stomach whilst at my desk and I knew I was in trouble.

I didn’t fully make it, had awful liquid bright yellow diarrhoea. In one hell of a mess I was lucky I could contain it all in my knickers (I wear period pants due to this) but they had to be ditched.

to say I’m absolutely sick of this would be an understatement. I’m scared to work, to socialise, to leave the house - this is so unpredictable I am living in constant anxiety and that makes it 100% worse. I was shaking and panicking today until I could see that I was going to be able to get away with it.

So, I’m stuck. I don’t know if it’s the gluten free wraps, the chicken soup I had last night or the probiotic but I suspect it is the probiotic.

should I persevere with them? I’ll be terrified whilst still taking them but if I thought they’d work long term I’d try and stick it out.

Any advice please? I’m desperate now and can’t carry on living like this.

Please do report back OP. I'm going to try it as well, but when I'm off work to start with🙄

I take optibac extra. I didn't start with it. My functional medicine doctor put me onto other prebiotics and probiotics first, and that was after a 28 day exclusion diet when basically I gave up everything and the put them back in a measured and controlled way. I also had my gut biome analysed. They're strong and you probably shouldn't be messing about with them without a programme prescribed by someone who knows what they're doing. Have you thought of having your gut analysed? It's not cheap but it's possible that you have overgrowth of 'bad' bacteria, or some other problem that could be isolated and put right.
I had the same issues as you and it turned out to be hugely high levels of bile acid. I thought I was going be faecally incontinent for the rest of my life. In fact, it was sorted in weeks.

I've just ordered some too. Fingers crossed!

Have you tried low FODMAP diet?

What is a typical day's food for you?

Please report back once you've tried the fybogel. I'm fed up of having to run to the loo several times a day too.

@Toodlesbean check out Dr Will Bulsiewicz - "the Gut Health MD", as he styles himself. I first heard him on one of the Zoe podcasts (they're by a team led by Tim Spector from Kings College London, all about gut health, nutrition, gut microbiome etc), and am reading his latest book - The Fibre Fuelled Cookbook. He explains how and why to establish which foods might be causing problems, what the most likely culprits may be, why fibre is so important but too much / too soon can be problematic, and why probiotic supplements can be problematic too. From what you've said I think you might find some of his info useful. He's a gastroenterologist with a special interest in all of this stuff, so he knows his onions.

I hope everyone that tries the fybogel finds it helpful. This link explains how it works and how it can help with loose stools -

www.plymouthhospitals.nhs.uk/display-pil/pil-how-to-take-fybogel--4071

my DH has various gut issues. he finds probiotics make it worse but he swears by a drink of slippery elm powder mixed with hot water in the morning. it is vile but supposed to be really good for guts. he is also gluten free, and generally plant based, and since following the plant based diet he's had no flare-ups serious enough to require hospitalisation which had been happening yearly prior to that. He says you have to take the powder in the water for slippery elm, not the tablets, for it to work properly. he was under a homeopathic hospital in London and they advised this.

Try the optibac gummies (not extra). I tried a strong probiotic for a bit and had a lot of cramps, gas etc. I changed to the adult gummies and am finding them ok.

I'd put money on this being bile acid malabsorption.. You need to try medication. I've forgotten the name!. There is a test called a sehcat scan but the medication working can be used I stead

If you do decide to try kefir please find someone who makes their own and who will share kefir grains with you, a lot of what is sold commercially has probiotics added artificially, I make my own and drink it as it is but it can be added to a smoothie if that easier, start off with a tiny amount, as little as a teaspoon and increase gradually. Its great for dogs too if you have any. I make dips, salad dressing, smoothies, kefir cheese, add to home made ice cream, its amazing what you can do with it when you get used to it. Best of luck, I hope you feel better soon.

Sorry, I should have said earlier, I asked the GP to give me cholestyramine sachets in case it is bile acid malabsorption but I can’t say I saw any great improvement, I still got the same ‘toothpaste’ type stools all throughout the morning with urgency etc.

Immodium works wonderfully but then I’m backed up for a day afterwards and then get twice the amount the following day along with tummy ache etc.

I do know it’s linked to anxiety as if I know there’s no toilets I start to panic and then I will involuntarily start to poop. It’s awful.

It happens loads if I go shopping, walking, meetings in work, anywhere that isn’t my own home. I need to knock this on the head as it’s a vicious circle of anxiety and pooping the getting anxiety about needing to go.

it’s difficult to separate whether it’s food or anxiety or both.

I know I feel better when my stools are firmer though as I then at least have some time to get to the loo

To reply to BIWI, I recognise you from the low carb forums. I was much, much better when low carb but that started off gallbladder pain and if anything my toilet issues have got worse from that so I’m reluctant to go full low carb again.

Don't do a capsule probiotic, just add natural probiotic foods to your diet. Obviously not yogurt or kefir if you think dairy is an issue.

Have you had help from a dietician? A proper exclusion protocol?

My DC had explosive stools with any milk based stuff. It's not a hard thing to exclude, these days. Just do a couple of weeks where you eat only meat and veg and see whether things improve.

When you are ready to try with probiotics again, do things like sauerkraut, kimchi, miso etc If you know dairy is ok, then yogurt, kefir, blue cheese, brie.

A spoonful of each on a regular basis is much better than a bowlful of one!

I experienced very similar symptoms for a few years & it was miserable Op

Many suggested diagnoses, including IBD, pancreatic insufficiency etc

It seems it was my mast cells flaring post-infection. Google MCAS & follow the low histamine SIGHI diet until they calm.

~ Only eat the 0's for a while before reintroducing the 1's etc (Be careful with leftovers & reheated food too, as histamine builds up).
~ For a while I didn't rock the boat with high FODMAP either.

www.mastzellaktivierung.info/downloads/foodlist/21_FoodList_EN_alphabetic_withCateg.pdf

For some of us, MCAS affects more than the gut too, so we have to take anti-histamines + mast cell stabilisers. Start with trialling the diet & see how you get on. Best of luck 💐

Oops. I meant to add, avoid all fermented foods too, which cross posted with advice from @picklemewalnuts . I'm sure you'll soon find out which ones work or don't work for you.

Thanks MissMCAS, I’ve actually seen a bit of an improvement when I started a daily antihistamine early in the summer before going on holiday. I wonder if it could be that.
Ill have a good look, thank you all so much

I wasn't going to suggest that you should! I was, though, wondering what you're eating as this may be part of the issue.

Absolutely, @MissMCAS !

Fermented foods can be great, and do resolve some people's gut issues. But start a teaspoon at a time, not a whole bowl of kimchi like a recent PP did!

Like everything else it helps some and upsets others, but never start big!

Thank you @picklemewalnuts

I didn't mean to tag you. Our timing made me laugh

I agree, fermented foods can be amazing for some people & I couldn't understand why I wasn't getting the same successful results as everyone else on it! Shame, as I absolutely loved Kefir, both water + milk.

Starting small (& only one new thing at a time for at least a week) is excellent advice.

Ooh, you might be on to something here then.

Keep up with the detective work. Keeping a good diary + all reactions was super helpful for me, to spot patterns.

Like you, tomatoes were my downfall & I still can't tolerate more than a tiny bit every now & again.

I also have MCAS and probiotics and yogurt etc make it much worse .

the low histamine diet has changed my life .

@MissMCAS is there any threads here on MCAS ? Would be great to chat with fellow low histamine people . No one seems to understand this condition.

I've just had another accident this morning while running to the loo.

Fybogel coming from Amazon later today. Please all keep fingers crossed for me!