Severe IBS D and Bile Salt Malabsorption

[KirstieG]

Hello there,

I'm new to this forum stuff and haven't sought support from others in the same/similar position to me before.

A bit about me....

I'm 44 and have suffered with IBS D for about 25 years now. The issue has become progressively worse and is now seriously affecting my work and home life on a daily basis. I was recently diagnosed with severe Bile Salt Malabsorption too, so have come to the conclusion that, basically, my body hates food as it causes no end of problems whenever I eat anything at all.

I started on a low-FODMAP regime about 14 weeks ago now. I have found that it helps in some ways, but doesn't relieve as many of the symptoms as I'd like - particularly the uncertainty of leaving the house and not having accidents in public. Avoiding onion and garlic is truly the hardest part!

I'd love to hear from anyone else who has a combined gut issues; I don't know much about BSM or how to manage it in association with IBS - it feels like a bit of a double whammy.

Much love and support to everyone else suffering from this debilitating condition. xx

[Hidden]

Hi Kirstie,

I'm sorry to hear you've got the problems you have - especially over such a long period of time too.

Before I attempt to offer any pearls of wisdom, however, it would help if you could give a bit more info.

Firstly, is bile salt malabsorption the same thing as bile acid malabsorption and, whether it is or not, have you been given treatment for it?

Secondly, where are you getting your info from regarding low-FODs?

Rosie

[KirstieG in reply to Hidden]

Hi Rosie,

Thanks for coming back to me. Yes, I believe that Bile Acid and Bile Salt is the same thing. The consultant explained that my body doesn't reabsorb bile at the end of the small intestine like its meant to, so it causes irritation in the large intestines and throws all the fluids it can at it to flush it all out... quickly, violently and uncontrollably. Sadly this happens whenever I eat anything (good or bad).

I have been given Colesevelam to bind the bile salts/acids but they are a bit hit and miss as to whether they work or not; and when they do work they make me very bloated and uncomfortable.

I've been referred to a Dietician for low FODMAP, but have had to wait months for an appointment - actually going for my first one this afternoon! Desperation at having to wait so long to talk to someone led me to a couple of books by a Dr Sue Shepherd with information, recipes etc. it's been quite useful, but I'm worried I'm missing out on other vitamins and stuff (water soluble vitamins are also absorbed in the same place as the bile salts apparently - so if that's not working, I don't know what else isn't getting through.

Kx

[Hidden in reply to KirstieG]

Hi Kirstie,

I asked about the BSM/BAM since, rather than making me wait for a SeHCAT test, my GP decided to give me a trial-by-treatment (i.e. if it worked I'd got it, if it didn't, I hadn't) using soluble cholestyramine granules which is probably the same or similar to colesevalam. As all it did was to fill me full of wind and bloat, my GP decided that BAM wasn't my problem. The leading researcher on this is Professor Julian Walters, here's a link to the page regarding some of his latest work, it may be worth contacting him to see if he can give you better treatment advice:

imperial.nhs.uk/aboutus/new...

As for FODMAPs, the diet works extremely well for many of us on here and I always highly recommend it. The regime originated at Monash Uni in Australia and Sue Shepherd was one of the instigators, so you've got the right info. The NHS version of it isn't nearly as strict as Monash's and, to my mind, doesn't work anything like as well. There's an excellent app available on the uni website at:

med.monash.edu.au/cecs/gast...

It's absolutely great for shopping and eating out.

When I first started FODs (about 3 years' ago), I didn't think it was going to work very well for me, then I began to tweak it a bit and it just got better and better. Much to my surprise, I eventually twigged that rice served me even worse than wheat, barley and rye and sent me rushing for the loo at even faster pace than usual. Other people have found the same, so worth considering, especially if you're eating bread/cakes made with rice flour.

I now have about 95% control over my symptoms and things only really go awry if I fall off the wagon - it happens!

You mention how much you miss garlic, onions etc, did you know that the green ends of spring onions are okay to cook with and that onion/garlic-infused oils are also okay?

I hope you get some good advice from the dietitian about vitamins etc, it must be difficult trying to balance everything out, but maybe Prof Walters can help you with that.

Rosie x

[KirstieG in reply to Hidden]

Hey Rosie,

Some really useful information here, thank you!

Dietician appt was a little disappointing - I'm already eliminating most everything that has been found to cause issues, and there isn't much more she can suggest - though I'm going to try low residue for a few weeks and see if the fibre is causing problems; but other than that, it's looking like where I am at the moment may be the best it will ever be.

Time to get realistic with what I can and can't do and change my life a bit to better accommodate things. It'll all work out, I'm sure.

Kx

[Fantasticjudyann in reply to KirstieG]

I am disappointed to read your post because I am due a SecHat scan to check for BAM and hoping to be prescribed Conesevelam

But clearly it is not a simple issue

I have suffered from IBS-d for 18 years after having my gall bladder out

I am at the point of desperation. I really thought it was going to be a life saver for me

Now I am deeply unsure

[KirstieG in reply to Fantasticjudyann]

Hi there,

I'm so sorry to hear that.. but remember that everyone (and every gut is different). I have heard good things about Colesevelam - apparently much easier to take than the cholestyramine. It's just taking me time to get a balance that works for me.

I had my gallbladder out about 12 years ago and have been playing with what I can and cant eat ever since.

I truly hope it gives you relief! x

[gofadi123]

Hi Kirstie, you poor thing, I too have the same problems as you and have done for years. Try an antispasmodic such as Buscapan, I find it works like a dream. I will talk more if you wish.X

[grahamrupertrules]

Hi

I'm along term sufferer too. tried most things but now take colofac 3 x before meals, cut tea back to max 2 per day.take amytripline low dosage so not addictive but supposed to shut down signals from brain to gut when anxious. cut out all nuts, fruit peelings , prawns, Cold pasta .all seem to give me IBS. No Fizzy drinks/lager either. Hope something here helps you. can really get you down when you struggle with work etc.

GFF

[KirstieG in reply to grahamrupertrules]

Hi Graham,

Thanks for the tips. Most of your list are already out of my diet - the dietician I saw yesterday did suggest that maybe I try low residue as well for a few weeks and see what difference that makes... no peel, pips, nuts etc.

I was on amitriptyline for a while. Whilst it worked well at relieving some of the cramps it was giving me nasty side effects that were intolerable - increased nausea, dizziness, and oh the itches! I would be clawing at my neck all the time... it was horrid.

The work thing is taking its toll unfortunately. I am hardly able to leave the house without codeine so have been working mainly from home for a couple of years now. Now the company are wanting to change this arrangement and I may end up out a job... lord knows what I'll do instead - its a real worry.

K

[robrascal]

Hi I too have several long term problems .I do have Questran for BSM prescribed by Doctor ,for me it doesn't resolve it but does help. Fodmap wasn't too helpful to me.As I have already ,a list of foods that I can't tolerate, All these things help for some of the time,but I find IBS has a mind of it's own!!!! and learning to live with it is the only thing I can really offer. Sorry not to be more help.

[grahamrupertrules]

Hi Kirstie,

have you tried Culturelle probiotics? works for some. also i tried silicolgel. didint do much for me but some people found it was their cure. Dont think supermarkets probiotics do much for ibs sufferers more for those who have mild bloating/cramps.

im always better on holiday so trying to introduce what i dont consume and what i do on holiday into the rest of the year. eg like less tea, more wine! morer walking, swimming, reading,relaxing. have you had your vit d level checked- i was recommended and it was a bit low.

Will pray for healing if you would like me too. God healed my sister in law of throat cancer and a friend of mine from bladder cancer.so prayers get answered!

best wishes

gff

[Pjkvrk65]

I am just going through a bad time, I've been recommended Silicol Gel started on it today fingers crossed .

[panter]

I've have IBS for many many yrs and keep getting worse I also have anxiety disorder which the two work against each other. I've started having very bad back pain because of this.