Bile Salts Malabsorption

Hello Everyone.

I have a problem, and I hope someone can help me.

Since I was a teenager, I started having diarrhea shortly after eating. It would happen about 5-8 times a month. When I was in my 20s, it seemed to get worse. I had an upper GI series, barium enema, CT scan, sigmoidoscopy, and colonsoscopy. Mild inflammatory changes turned up on the sigmoidoscopy, and I was given a short round of steroids that cleared it up for a few months. Then it went back to its 5-8 occurences a month.

Seven years later (just 3 months ago), I developed bright yellow diarrhea (never that color before) that hasn't stopped. It even wakes me up at night to go. I have lost a good amount of weight with this too. I went to my internist's the first week. She ran some stool tests, a CBC, and liver function tests. Everything was normal. After two weeks and still in misery, I was sent to a GI. She ran tests for celiac and put me on 1mg of Imodium before every meal. The celiac tests were negative. The Imodium slowed things down, but didn't stop it. She told me the stool was bright yellow, because I have biles salts malabsorption. My ileum isn't working right. She ordered a CT scan.

Well, the CT scan showed enlarged lymph nodes in my lower right abdomen where I have been tender. There was no evidence of thickening of the ileum. My appendix was removed in 1998. She told me it was very likely I had Crohn's. I need to mention that I have been having fevers for over five years that last 2-3 months and occur 2-3 times a year and the docs don't know why. Also, I have joint pain and canker sores that come and go with relative frequency. So, she ordered a colonoscopy.

The visual on the colonoscopy was normal. She took 8 biopsies of the colon and 0 biopsies of the ileum. I don't know why she didn't take a biopsy of the ileum?!!! I still have the bright yellow diarrhea or stool. Plus, I can't tolerate dairy anymore. She just told me to keep taking the Imodium, but didn't give me a diagnosis at all. When I asked her what it was and how long it would last, she said she didn't know.

Has anyone had a similar problem with bile salts diarrhea and difficulty in getting a diagnosis? I'm going to see another doctor. My immunologist said that it sounds like Crohn's to him. I don't have ulcerations. Are there patients out there that develop it more slowly or have a milder form? I've read about patients have terrible ulcerations, fistulas, and resulting resections, but my symptoms are not that severe. I'm at a loss.

I haven't heard of what you are describing, but I would work with another Dr. until something was discovered and improved. Immodium is a bit harsh on the body as a long-term thing.

As for milder symptoms, I'm like that. I have strictures (narrowings in the intestines) butthe progress is slow and I have almost no symptoms. Everyone is different, from the mild to the severe.

Keep working with the Doctors and don't accept anything you don't think is right.

Thanks, Cara. I'm getting a second opinion. Especially, since she didn't give me a diagnosis in the first place.

Hi Bilesalts,

You are not alone on this one!!

My GI ran a test where I swallowed a radioactive pill that had bile salts in it. I then had one nuclear medicine scan when I swallowed it and a second scan EXACTLY a week later at exactly the same time.

It tracks your bile salt reabsorption. Apparently you reabsorb something like 20-30% of your bile salts in your terminal ileum but mine was only 3% and that was a reasonable week for me in relation to running to the loo!

When my GI saw the results it was minutes before I had a colonoscopy and he said "ooh bile salts! lets see what else we find with the scope then". I had a provisional diagnosis of Crohn's later that day and it was confirmed 2 weeks later with the biopsy results.

So yes bile salts play a BIG part in diahorrea. It means you dont break down your fats properly and that is why you end up with yellow diahorrea. Does that help??

So definately go for a second opinion. Its all the little things that add up too so dont be afraid to say about something that is bothering you as it could be important to your diagnosis.

Let us know how you get on. Thinking of you.

Jan

Thanks, Jan!!!

I got my internist to approve a referral to another specialist. He heads up an IBD center at a hospital on the East Coast of the U.S.; so, hopefully, I'll have an answer soon.

Also, thanks for the heads up about the biles salts nuclear medicine test. There's another thing that first GI should have done, but didn't.

Glad it helped Bilesalts,

Another nuclear medicine test my GI did in the same round of tests was "gastric emptying" where I ate radioactive scrambled eggs and they then scanned me every 20mins for 3hrs to track how fast it moved through my gut.

I dont have the more normal probs like low Hb with anaemia for instance, but they realised I was deficient in vit K and potassium and magnesium. So took a while to figure out and tests can be draining and frustrating too when all you want is relief.

The results came back as being "at the very fast end of normal" (the test was done last Autumn with the others), however I am just out of hospital last friday after a 2.5wks stint there. They have now diagnosed me with severe irritable bowel syndrome on top of the crohn's. The gastric emptying test from last autumn helped with that diagnoses on top of another colonoscopy and a few other tests to boot!

Hang in there and keep at them til you get an answer you are happier with. There is always a reason for abnormal gut function. I kept saying if my Crohn's is improving why am I still running to the loo and getting severe abdo pain and cant eat then? Turned out it was a combo of a crohn's flare and IBS.

No one wants you to have Crohn's or any other bowel problem or disease but if you do then you are on the road to recovery now just by pushing for the help you need.

Keep in touch.

Jan

Yeah, I have problems reabsorbing it too, but I'm missing my terminal ileum, where the bulk of it gets reabsorbed at.

Cholestyramine POWDER

HAS ANYONE TAKEN THIS FOR BILE SALT DIREAHA? Seems I might have Habba syndrome and this powder helped me but now have very frequent headaches which i never had and seem to be retaining fluid in ankles legs and fingers in the am. take the powder at 10:00 pm at nite to avoid taking around other meds.
anyone else us this powder of have headaches with it?
Judy

I was diagnosed with Crohn's just over a year ago. I was told I have moderate Crohn's and I had several ulcers in my colon. I have been in remission since then and haven't had any problems (except for one false alarm where I was just stressed). I just got my blood work done a few days ago and saw my GI for the yearly check up. Everything was perfect.

But then, just today I got that type of bright yellow, clear (almost no actual poop in there) diarrhea. My intestines felt like they would explode and I had to run to find a bathroom. Now, according to my bloodwork there is no sign of a flare (CRP and sed rate were perfect, Hb, calcium all good.. etc etc), so what's going on with this diarrhea?? I didn't eat anything that would give me diarrhea, and even if I did, wouldn't it be normal brown diarrhea? I've had this in the past, before I was diagnosed, several times. I have not had any abdominal surgeries (have my gall bladder and all my intestines). Could I still have something like this "Bile Salts Diarrhea"?

Thanks!! anda-wave-t:

im currently on meds for this very same situation,because of where i had my double resection years ago,it causes problems with my bile salt absorbtion.i was given questran but never really got on with it so im now on colesevalam tablets,6 a day so take 3 with meals and imodium and im hoping it will put my instant explosive D at rest or least of all give me some restbite for a while,i was doing solid BM a month ago so it seems that the bile salt thing is come and go.i hope this helps with any questions that need answered....

Garden Lover said:

HAS ANYONE TAKEN THIS FOR BILE SALT DIREAHA? Seems I might have Habba syndrome and this powder helped me but now have very frequent headaches which i never had and seem to be retaining fluid in ankles legs and fingers in the am. take the powder at 10:00 pm at nite to avoid taking around other meds.
anyone else us this powder of have headaches with it?
Judy

Click to expand...

Yes,
I have too much bile acid and my GI put me on a powder called Questrun. (generic is cholestyramine)It was originally made for high cholesterol. But, it forms a stool really well, so Dr.s started using it for crohn's patients. I don't get diarrhea as much with it. But, I don't really notice a headache from it. But, I do get headaches alot. I even had a catscan because the headaches were everyday for 6 months.(before I was on this medicine). Then the belly pain started. That's when they gave me a colonoscopy and found the crohns. In my ileum and top of colon. Try and not take the powder mix one day and see if you still get a headache. It could just be from a lack of vitamins or something other than the medicine. Hope this helps!::hug:

I wonder if a bile acid problem is the cause of Crohn's in the first place. It could be getting stuck at the illeocical valve and backing up causing irritation, swelling, and scarring.