How to control chronic diarrhoea?

[ArnieandBob]

You would like to think that after suffering from IBS for over two decades I would know the answer to this but I don't and it drives me insane.

Despite avoiding my trigger foods (dairy, certain fruits and veg and artificial sweeteners) and following a very boring low fodmap diet I still have almost daily issues with my bowels. Fibre is my nemesis, just a tiny bit too much and it really upsets my digestive system, I tend to keep low on the fibre.

I go to the loo anything between 1-3 times a day. No two days are the same for me. I can have a day or two of passing 'normal' looking stool and then it will change to much looser (and sorry if tmi!) but sludgy/mud-like stool (often starts as normal and gets looser each time I go). I have lots of gut symptoms throughout the day including excessive gurgling, bloating, gas and gas like pain. I hardly ever have a calm gut and the mornings are awful. I also suffer from a lot of acid and nausea.

I have resorted to taking Imodium a few times a week to try to control the sludgy stool but tbh it doesn't do much, all it does is slow my gut down, the stool will stay the same. I have tried all the standard IBS meds such as Mebeverine but they have very little effect. I listen to gut directed hypnotherapy every day too but that has little effect either.

I have had colonoscopies, endoscopies, a bile acid malabsorption test and lots of scans and all ok and so they can offer no more help.

I am at such a loss though, I don't want to keep waking up every day, needing the loo as soon as I wake up and spending the rest of the day feeling dreadful within my digestive system. I can't function well for the first half of the day worrying I need the loo to clear it all and then spend the rest of the day frightened to eat in case I trigger it off again.

Surely there must be something that can help and give me back the normal functioning gut I had before all of this started?

Btw, I promise I am not a poo troll just a normal 51 year old menopausal woman trying to get through the day living in fear she may crap herself if she leaves the house 😩

I use modibodi, the ones they advertise as being for "heavy flow". Not cheap but the padding on them is really good and goes all the way up the back. But they're also comfy to wear.

My daughter was diagnosed with BAM in her early twenties.

Be careful with questran - it was the reason my daughter, who was on the birth control implant, became pregnant.

She hadn't been told she needed extra protection.

She was pregnant at very quickly after starting it.

@MyOtherCarIsAPorsche
Yes, when I was prescribed it the doctor warned me that it soaks up other medicine thus making them ineffective.
I take mine last thing at night.

I use Slippery Elm supplements, I think it lines your gut so protects it

https://www.cytoplan.co.uk/shop-by-product/all-herbs-plant-bioactives/slippery-elm-230mg-60-capsules?gad_source=1&gclid=CjwKCAjw9p24BhB_EiwA8ID5BjYJmhBCelNHzHDKGG_d43VhK8BrC_Qwum0oBRgDEkk1uGqLJIv4-BoCHAkQAvD_BwE

Thank you, I really need to try this.

My stomach has been loads better since I started taking omeprazole.

Are you on hormonal contraception? I found the pill made my IBS loads worse.

The Omeprazole doesn't cause you any lower gut upsets? I've always been hesitant to take a ppi as the top side effects is often listed as diarrhoea.

I've never been on any hormonal contraception.

Omeprazole has always been fine for me.

I have a great update!
The GP, who I'd thought was very dismissive, rang me today. He'd been in touch with gastroenterology who have advised him to prescribe me Colesevelam, without the need for a BAM test!
I collected the prescription today and felt like I'd won the lottery. Here's hoping it does the trick, it's been 10 years since I last saw the gastroenterologist about this.

Chocolate porridge that’s great news. Let us know how you get on.

Oh that's great news.
Yes, please do let us know how it goes, good luck.

My husband's GP has written to gastroenterology to see if he can have the sehcat test.
Can I ask anyone with BAM what your symptoms are please?
I'm really hoping we get some answers soon as he has been poorly for over a year and just when he starts to pick up a little, it all comes back.

Can I ask anyone with BAM what your symptoms are please?

Mine were pale, watery stools and unpredictable and uncontrollable urgency. Until I started taking cholestagel the possibility was always in the back of my mind so I could never fully relax and enjoy myself if there wasn’t a loo handy.
i can’t understand why so few doctors seem to know about it.

@38thparallel
Yes, he's the same.
Headaches? Fatigue? Pain?

Choccymumma no, on the whole I felt ok. Your poor dh, he’s obviously not having an easy time.
However before I was tested for low thyroid I did have headaches and terrible fatigue, but no diarrhoea.

Me too.

I get the Imodium on prescription (as Loperamide) so I have plenty each month. Sometimes I even have to take it twice a day too.

I've never been able to work out my IBS triggers, but somehow or other it does seem rather better (though not perfect) now that I am finally, at 58, through the menopause. So I have sometimes wondered if some of it has been hormonal.

So....a quick update on the Colesevelam that the GP agreed to prescribe to me for BAM without having to get the SehCat test done.....

I've been on it for 3 weeks now and it's been absolutely life changing!!!!! I have had absolutely no stomach cramps or diarrhoea since the day after I started taking it. I get no bloating. Instead of having a bowel movement up to 7 times a day I'm going once or twice and its "proper" in its consistency!!!! We went on holiday and it had some very stressful things happen but I didn't feel my stomach start churning the moment I got stressed, in fact the stress had no impact on my stomach whatsoever. I didn't need to use the loo on the plane or the trains!

I've started having porridge for breakfast again, I can eat fruit and veg again, I can eat fibre again and I can finally start to lose some weight after having to survive on the most processed foods and the sugar cravings after bouts of diarrhoea. I can go to the shops without worrying about where the toilets are.

The only side effect is that it can interact with other medication and although I'm being extremely careful about the timings I'm having a few meds issues but I think hopefully my system will adjust as I get the dosage right.

Now though I'm starting to feel very sad about the last 14 years. I had my gall bladder removed straight after my first DC and have been really bad with "IBS" ever since. When I was pregnant with my 2nd DC I saw the gastroenterologist and apparently he considered BAM but didn't mention it to me. So for the last 14 years I've been missing events in my children's lives and not doing things that we'd all have enjoyed, sometimes unable to leave the house to collect them from school when it could all have been stopped so easily.

I'm so grateful to the GP for prescribing the Colesevelam!

That's absolutely fantastic to hear OP. Clearly BAM has been the issue all along, so angry for you that it wasn't recognised sooner and you have lost the last 14 years. However, best not to dwell on that, just look ahead from now on you must be so thrilled.

That's fantastic @Chocolateporridge . I was prescribed Questran (Cholestyramine), which is a very similar thing ( only taken as a soluble powder instead).. also prescribed without the test as an experiment initially because the wait for the test for BAM was so long . I have been on it for about 4 months now and they have agreed to continue prescribing it for me , thankfully because its been utterly life changing in the same way as for you.. I can now eat vegetables again and pulses ! It's not perfect- I still sometimes have some dodgy days , but the days of not being able to leave the house until lunchtime have gone . Its amazing...