[Friedabongo]

Hi Everyone.I just wanted to pass on this information, to hopefully help any of you that have similar stories to mine. I have had IBS with awful pain and diarrhea for over 18 years. I've seen numerous consultants and had all the usual tests and been told to get on with it and take Codeine Phosphate to control the pain. I'd typically go about an average of 9 times a day and feel constantly tired.About a year ago I went back to my GP again following a really bad 6 months and he referred me to an IBS center of research in Withington, Manchester, U. I tried every tablet going to control my IBS (including each brand of antispasmodics and low dose anti-depressants) and had a whole new set of tests done. Still nothing worked!I fortunately saw a a doctor who sent me for a nuclear medicine abdominal scan (SeHCAT Test) and it turns out I have not got IBS-D but I have BILE SALT MAL-ABSORBTION. Because I don't absorb my bile salts they leak into my large intestine and cause pain and diarrhea. My consultant was really shocked as I have no history of surgery on my bowel or my gall bladder. I have now had my first month of Questran Sachets and have not had any diarrhea for the first time in 18 years. I can't tell you how blissful it is to have my life back and not be running to the loo all day. Also to have some sort of medical answer.Apparently it's quite rare to have it, but with so many people being diagnosed with IBS I'm wondering if it's not more common that the doctors think? Do get in touch if anyone would like any more information. Good luck.

 

[blondeoverblue24]

I think doctors are becoming increasingly more aware of this problem and are considering questran more often, especially in those with a history of gallbladder issues and/or those who have their gallbladder removed. But like you said, you did not have such a history, so it may be worth patients bringing up, especially those who have pain in their right upper abdomen and those with symptoms that are more gallbladder related. Unfortunately, I do know some people who have bile salt diarrhea and IBS, so it may not be a cure-all for everyone. However, it's wonderful to hear that you're feeling so well!

 

[Kathleen M.]

The bile binders like Questran that are used for excesss bile issues are often used for IBS diarrhea anyway as they tend to be quite constipating.For some people that works pretty well. Usually they only look if you had your gall bladder removed so can't regulate outflow or have had surgery and thus don't have the part of the intestine that reabsorbs it before it hits the colon.A lot of our people here use Calcium so that may be part of the issue.Sometimes it is called Habba syndrome, but I think the person that named it usually thinks it is a lot less painful than IBS.

 

[Borrellifan]

I tried getting my GI to prescribe it to me, at first he refused but with a bit of harassment on my part he relented. It didn't work at all for me but its definitely worth a shot. Isn't this called Habba Syndrome or something?

 

[survivor796]

hi FridabongoI am very happy for you.

I would like to know your former symptoms, i have ibs-d for 10 years but i cant say it is an exact diarrhea, i have too much gas and soft mushy stool. when i take antibiotics stool shape gets normal but still excessive gas. Could you give more information about your past situation? Looking forward to hearing from youRegards

 

[survivor796]

were your LDL,cholesterol values normal on yor blood tests?and is this SeHCAT Test only way to diagnose bile salt malabsorbtion situation?

 

[Friedabongo]

Yes I have completely low Cholesterol tests, although hi results do run genetically in the family. At the mo this test is the only way to diagnose, however, my diarrhea was constant and very extreme (ie not mushy!!!).You say that antiobitics do help you, have you been tested for too much bacteria in your guts? It's a hydrogen breath test done by a specialist at the hospital. Sounds to me like you might have too many bacteria and this is causing your symptoms? I'm not a doctor though! But you should definitely get both hydrogen breath tests done first (one is for lactose intolerance and one is for bacterial infection)Should both of those come back negative (as mine did) then you can ask for an abdominal scan.Good luck to you, hope you get sorted out.

 

[Friedabongo]

This is indeed also known as Habba Syndrome (although believe me, I'm reluctant to swap one syndrome for another!) However treatment is proving to be effective for me and for lots of other patients previously diagnosed with IBS. Can't believe I've been treated for so long with so many drugs that haven't worked is all. Despite my good old NHS, it's cost me a fortune of perscriptions and alternative therapies. I'm extremely happy to pass on this information to others who MIGHT also be on medication that isn't working for them. If you've exhausted all other tests ask you consultant for a scan. I've felt so ill for so many years, it's truly like a miracle for me!

 

[survivor796]

No i have not made breath test , my doctors convinced me that my problems are not relevant to bacterial overgrowth. can you remember your bilirubin levels on blood tests ? were they normal?

 

[PRJM]

A lot of our people here use Calcium so that may be part of the issue.

I can't quite figure out what you mean by this. Are you saying that Calcium is detrimental or beneficial? I take it and to be honest I had to try to remember why I do but I guess it regulates muscle contractions and has a constipating effect.Please let me know if you have information to the contrary.

 

[Kathleen M.]

Calcium seems to help people who have known bile issues.So the calcium isn't causing the problem, but some who find it helpful might have a bile issue.