Bile acid malaborbtion

Mine was expressed as bile salt malabsorption (I guess it is the same thing) and I was treated with Questran which knocked it on the head.

I too have no gall bladder and got this and also something called Sphincter of Oddi Dysfunction, which can also happen to people with no gall bladder. The pain from that has landed me in hospital twice - unconscious following dreadful pain - they think the spasm in this sphincter tweaked the vagus nerve and sent me unconscious.

None of this did they mention when they planned to remove my gall bladder!

I would suggest finding a closed Facebook group to join for support, advice, ideas, etc.

I am an admin on a closed FB group for Exocrine Pancreatic Insufficiency whereby the pancreas has stopped making digestive enzymes for various reasons. We have many members who also have BAM and/or SOD, as well as Diabetes and other issues... and often stemming from Gall bladder removal or Bariatric Surgery.

We have members from all over the world, we all help each other and have learnt so much as quite often the medical profession - I can only speak for EPI and M.E. which I also have - don't know much about it.

Luckygirl - Yes it is the same thing. None of this was mentioned to me when I had my gall bladder operation.

I have read that following a low fat diet, below 40% fat helps, do you follow this diet? Trying to work out the best way forward.

Sparklefizz, thank you, I have signed up to Guts UK on FB to hopefully find help.

I am careful about the fat content of what I eat as I know that the SOD is worse when I eat fat. I do now recognise the warning signs when it is going to happen and take a big dose of anti-spasmodic. I have not collapsed with it for a couple of years.

Might be worth you talking to your GP about questran CassieJ - it really did work for me with the bile salt thing. And it worked very quickly. I took it for several years and then tailed it off and do not take it now.

Interestingly the SOD can be triggered by drugs from the morphine family - like codeine. I had a dreadful attack of it in hospital after my hip op - they gave me codeine and about half an hour later I was beside myself with pain. They thought I was bonkers I think - they gave me a gaviscon tablet.

I am very worried that one day I might need the other hip or a knee replacing and there will be no weapon against the post-op pain.

My gall bladder was removed this year and had no idea there might be possible post op problems, now feeling nervous.

silverlining Just be aware and be prepared to nip any problems in the bud.

Thanks you sparkle. I am getting reflux probs recently, not sure if that can be related to the gall bladder operation.

silverlining Were you given a lot of antibiotics after your gb op? Reflux can often be caused by something called SIBO (Small Intestine Bacterial Overgrowth) where the bad bugs in our gut get out of control. I have been battling it myself as SIBO is often at the root of gut and gallbladder problems, and it's quite hard to get rid of if it becomes entrenched. Reflux and heartburn are often symptoms of it. Don't be tempted to take Omeprazole as this makes SIBO a million times worse. You will get rid of one thing and gain a host more problems.

There are various alternative remedies if the reflux is bad. If it's just occasional, then Rennies or something similar are fine, but Omeprazole gets rid of stomach acid which is meant to be there to keep down the bad bugs. Too much stomach acid is not a good thing, but too little is even worse.

I use a homeopathic remedy called Natrum Phos 6x which works brilliantly. I don't know if I'm allowed to give a link to a stockist, but send me a PM if you want to know where to get it, or google it. It's also available online from that place with the name of a South American river

Thank you sparkle. I know the place you mean. My husband is always looking at it online. Maybe he wants to take a trip.

My op was 6 months ago and don’t recall a lot of antibiotics at the time and have taken none since. The reflux has only recently started. Will bear in mind your advice about omeprazole, thank you.

I've got SOD and not come across anyone else having it before this thread.
I can tolerate dairy fats but not fried food.
Hope your meds give you relief Caddie.

GladysB You are not alone - we have several members in our closed FB Group. If you feel isolated with having it, it really is great to join a group of fellow-minded people. I have a rare pancreatic disease and my group was a Godsend back in the day. Now I try to help others who are totally overwhelmed which many of us are at the time of diagnosis.

Oh no I knew I shouldn't have read this thread ! I'm due to have my gallblader out in November. I'm not suffering any symptoms, only found out through having a scan for rib pain caused by my job, it seems. I'm dubious about having it, there seem to be lots of post op problems.The consultant left it up to me to decide, but said if it's not causing a problem, it's probably best to leave it .There's so much to think about.

Actually it seems to me that you are doing exactly the right thing, Katyj by researching the pros and cons before making a decision to have surgery, especially as your consultant seems to have suggested that it might be best to leave it in place.

Only you can decide, but there are plenty of people in our health group who wish they had not lost their gallbladder because they have worse problems now. I am not saying you would be the same, but you need to be sure before going ahead, seeing as you've been given the choice.

Thank you Sparkle.
I have requested to join an EPI group on FB. I don't know if it's your one but it was the first I found that wasn't for dogs

I was meant to collect my prescription yesterday. Apparently Questron is out of stock at the manufacturer. I have trawled pharmacies in my area and phoned various ones -- all say the same they haven't managed to get hold of it in a long time. So, why has my consultant prescribed it! Surely he must have known the problems in getting this medication.

GP won't / can't help until they get the okay from consultant to prescribe something different. Can't get hold of the consultant or their secretary.

Symptoms are really bad at the moment, and I was really hoping this medication would start to help.

GladysB Yes, who knew dogs could get it? Not me!
but it was the first I found that wasn't for dogs grin^

I have sent you a PM.

I was put on colesevelam, for this reason, almost straight after my necrotic gall bladder was removed. If I don’t take it I get diarrhoea.