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.

Honestly, I'd probably stop if they are causing such bad diarrhoea. The anxiety of having an accident couldn't be helping you either.

I also had horrible side effects of probiotcs honestly try your diet first maybe add an actimel don't add to your distress

I lasted 2 weeks on them worst fortnight of my life .

OP, promise I'm not a crunchy, but have you thought about seeing a medical herbalist? Their treatments are largely diet based, they work around whatever the NHS is treating you for, and they should be able to give you/work with you to find a diet that will at least calm things down. Ive found them very good for dietary/digestive things. Not cheap tho, consult plus medicines was costing me £60-80 every six weeks or so last year. But might be worth it if you could get things under control/eliminate your triggers.

Also I use Always incontinence pants for a different issue but they're pretty good, elasticated legs, softer than some other brands, give you that extra few seconds to get to the loo.

I hope you find a solution, sounds hellish xx

You need to try one new thing at a time so you can see the effect on you.

Probiotic wise I use Kefir. It’s cheaper than actively type products and you do need to go steady with it. It really has helped my gut though. There is a school of thought around Healing crisis - Google it- whilst you adjust but it shouldn’t be as bad as you describe.

Do you have any leave planned? Can you take a period of leave or sickness to get to the bottom of this.

ah is it a capsule you’ve added?

Kefir. Unflavoured, natural type.

it can take a few months to build up good gut bacteria but it is proven, by stool analysis, to increase good bacteria and gut health.

Disposable incontinence pants are your friend. Also if you remove lactose from your diet, you need to make sure you check everything. Any probiotics would upset things unless they're dairy free ones.

I've had great results ruthlessly following the low FODMAP diet and working out my triggers. I'm much more confident going out now. The only probiotic I ever tried was actimel which was a disaster and made everything 10x worse. Good luck op.

I used optibac extra 20 billion culture.

yes you are right I need to try dairy free first and then gluten free. I nagged the doctor to give me bile acid binders as I was convinced it was bile acid malabsorption and they didn’t help at all.

Diet restrictions are the key I think and I need a wake up call like this to knuckle down to it. So fed up with it now.

I’ve just started probiotics and have been fine on the stool front, but they can cause diarrhoea so I would say it’s probably them.
maybe carry on with cutting out gluten/dairy instead first.

OP I could have written a lot of your post myself, I truly sympathise. Mine seems to be getting worse with age too. Are you taking Imodium? I take 1 capsule at night and also take one dose of Enterosgel during the day. These 2 things help me with the diarrhoea and to lead avrelatively normal life and would becworth trying until you can sort your triggers out. With regard to preobiotics, personally I can't tolerate kefir as it makes the diarrhoea much worse. I do take Symprove and although it doesn't help the diarrhoea it does seem to help with the terrible wind. My GP has offered amitriptyline which in low doses can help with IBS. I have resisted up to now because of side effects but I'm getting close to wanting to give it a try. There are mixed reviews and I guess it's a case of giving it a go. I wish you all the best OP and you are not alone, although it really feels like it sometimes.

I have very similar ibs to you.

I had similar issues when I first started probiotics but I did carry on and I’m glad I did because I do feel they’ve helped with my bloating etc.

But - the thing that’s made the biggest difference- and I would have laughed at this suggestion before I tried it- is having one fybogel sachet every day. I know that sounds mad because it’s meant to treat constipation but honestly it has really helped slow my gut down - the fibre in it bulks out the poo and slows everything down. I am not so terrified about not “making it” now and things are more predictable. Anyway, it may not help you or may even make things worse (I hope not!) but wanted to share.

Perhaps 20 billion is too much ! It’s quite a lot to start with especially as your loose away. Do you take 1 or 2 ?

id start low and increase

i use HeyNutient, not cheap but good
A good cheaper one is bioKult

@Afterfire it is interesting about the Fybogel, I might give that a go because occasionally when I've thrown caution to the wind and had beans on toast, I've actually found everything a bit more normal and slower, as you say.

Ah yeah I have tried psyllium husk at night before bed with a little, tiny improvement initially but that soon wore off.

what time of day do you take the fybogel please?

I'm in the same boat, OP. I'm on high doses of codeine too. I've even had diarrhoea on morphine!

I dread to think what it would be like without codeine.

I can't find a trigger at all, although I've discovered that something - whatever it is - makes my skin tender and feel kind of bruised if I eat too much of it.

I sometimes take loperamide now and again, which helps a bit. It's pretty cheap to buy generic bulk buy on Amazon.

I'll also have a look at the fybogel. That's one I've not tried.

Sorry if you've already mentioned this but have you been tested for bile acid malabsorption OP?

@Toodlesbean Have you had a colonscopy? I had similar symptoms and was referred quickly, within 2 weeks for investigations. They found a small polyp that thankfully was benign. It was removed and I had no further issues.

I only had one accident that caused me to go to the GP and it was considered important to investigate thoroughly

I'd stop the probiotics.

It's likely something you're eating or drinking.

Cut out dairy to start with.

Some other common things are artificial sweetners, alcohol, coffee, garlic and onions, spicy foods, fatty foods.

I take one sachet after my breakfast. You shouldn’t take it before bed as it can actually cause a blockage by doing that as it needs to be moved about for it to work it’s way through your body (it actually says in the fybogel instructions not to take before bed, it might not say that on the generic stuff). You can take up to two sachets but I just take the one as I take a lot of other medications as well (I have a lot of autoimmune issues, I take 22 medications a day) and you have to leave 1 hour ish between that and certain stuff and it screws up my meds timings otherwise.

It really does make a difference to me. I haven’t actually had any sudden running to the toilet since I started it (and usually I’d be doing that a lot)!

Are these ones ok?

I’ll have to try on a weekend, I can’t risk having an explosion in work again!

Yes those are the ones I take. I get them on prescription as I get free prescriptions due to medical exemption.

I am nervous for you incase they do the opposite for you and make things worse but I genuinely feel that they have improved things for me. It may take a few days to have any effect. It works by bulking out your stools and making them larger. For people with constipation this makes them easier to pass but for the other way round they stop the fast moving action.

Thank you, I appreciate your suggestion, I’m open to trying anything within reason. I’ll let you know how I get on.