bile acid malabsorption....a new diagnosis

[irish]

If we live long enough we can get just about anything when we have autoimmune disease. I have been battling strange stools and colon eruptions for about 3 years and it has sort of ruled my life some days. GI doc thought at first it was pancreatic enzyme deficiency problems even though my blood work was borderline. I took some pancreatic enzyme meds after eating and it sort of helped.
 

The past couople of months have been off and on issues......mostly on. Saw my GI doc last week and she started me on Questran which is a powder used to help lower cholesterol. However, it also helps my situation. Apparantly I have BAM or bile acid malabsorption. If you do a search with BAM or bile acid absorption you should find information. According to articles it is found often in people with irritable colon and other autoimmune diseases.

From what I could see this condition generally lasts the rest of  persons life but can be amed down by avoiding fatty foods and taking the Questran. I would not be surprised if a couple people on this forum would find that they have this also. So many of us have had colon issues over the years that seem to plague us. Good luck. Irish

[Joe S.]

All I can say is (((Hugs))).

[irish]

I should add that there is no known cause for this issue but it is possible that it is related to autoimmune. Irish

[Carolina]

At this point, I think ALL of the world's problems can be traced back to Immune Disorders!  Seriously, the list just gets longer and longer.

Irish, I know how tough it is when the plumbing goes awry.  I hope you are getting some relief.

The more we know, the harder it gets to understand.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4413966/

Regards, Elaine

[irish]

I have done more research on this condition called BAM or bile acid salts malabsorption and have found that it is found quite often in people with irritable bowel syndrome. It is also found in inflammatory bowel disease. It is one of those conditions that has been very slow to rear its head as far as the cause. People know they have cramps, gas and diarrhea but just assume that watching their diet will crd it plus taking some of the antispasmodic drugs.

It turns out that cutting down on the fat in the diet is important and I am finding that eating smaller meals more frequently helps. I have lost some weight because of the lack of appetite and nausea that is present much of the time. It isn't bad nausea but it lends itself to not wanting to eat eggs or meat and many other foods. Jello hits the spot which I eat with tapioca pudding. The good pudding found in the coolers by the yogurt at Walmart. In the margarine size containers for about 2.98$.

I am still working on getting on a schedule of taking the Questran powder 2 times a day per docs orders. I think it will take time to settle my gut down. I have to watch myself and my colon when it comes to social activities. Safer to stay home which in this weather is not much of a problem. I have been trying to find more info on Sjogrens related  to this issue. The info I do see mentions the Crohns and inflammatory bowel disease plus several others. Autoimmune seems to be an important thing. Good luck. Irish

[Skylar]

Irish, that?s interesting what you wrote about fat ingestion. I?m sorry you?re dealing with this new BAM

I?ve had long standing irritable bowel dating back to childhood. I?m sure many members here have it and we all have embarrassing bathroom stories as well as the pain.

I switched my diet years ago to the Dr John McDougall diet which is very low fat.  It?s also high in fruit, vegetables and whole unprocessed starches so there?s lots of fiber. It put my irritable bowel into remission. If I cheat and don?t follow the diet, my irritable bowel comes back. I?m eating approximately 15% fat in my food and none of it is extracted oils. I eat olives instead of olive oil for example so I get other nutrients and fiber with the fat.

[irish]

Skylar, Thanks for you input. This is such new information to me and I think to others. It is sort of like we don't know what to do with this information. I spent a lot of time yesterday researching this and ended up reading a lot of info on liver, gallbladder, pancreas and bile salts and bile acid. It was difficult to follow much of the time but I did pick up that about 1/3 of people with IBS can have this Bile Acid Malabsorption issue. Also, it is so complicated that there are many ways to deal with it. I know that I am nauseous a lot and can't eat a lot of foods. The thought of high fat foods including eggs lately is not good. I will buy groceries and end up throwing too much food as I can't eat what I bought. I really have to watch it.

I had issues with nausea for years off and on and for about 3+ years would be awakened by nausea around 4AM every morning. Not fun!!! Also, I dealt with nausea, weight loss, etc during my last pregnancy and the articles I read even covered those symptoms and it was very interesting. This is stuff that has been going on for years that has onto really been tied into anything. I know that during pregnancy my doc thought I would need gallbladder out and post delivery had X-rays and no stones. All stuff talked about in the research articles. Then there is stye IBS that affects people in so many different ways.

The articles talked of gallbladder disease, colon diseases(Crohns, etc), liver diseases and also brought up genetic diseases and autoimmune being the culprit. I hope that people on this site suffering with colon issues can get involved in reading and leave some info on this site. Thanks everyone. Irish

[Cndlgrl]

Hi, I haven't been on this forum for quite awhile... came back today because I've finally seen a reliable rheumy that is looking at a diagnosis of SS along with RA and Fibro. I already have type 1 diabetes. Anyway, just wanted to explain why I'm suddenly here replying to your post. 

I suffered from bile acid diarrhea after the removal of my gallbladder in April 2007. It got so bad that I was running to the bathroom 10+ times just in the morning hours. After a few years I discovered an article where someone mentioned taking Questran for their bile acid diarrhea after gallbladder removal. I mentioned it to my dr and she agreed to prescribe it. That was in August of 2011.

I have been taking the Questran daily since August 2011 up until a few months ago. Anytime I decided to try going without it, I would end up in the bathroom within an hour of eating or drinking anything. Last June, I switched to a whole food plant based diet. After several months I decided to try not taking the Questran and see if the WFPB diet would have any impact on the bile acid diarrhea. It was a miracle... after all those years and many times of trying to go off the Questran, I was finally able to stop it and not run to the bathroom. I haven't taken it since and haven't had any problems.

As a side, I had also been suffering with GERD for many years and was on multiple medications for it. The WFPB diet also cleared up my GERD and I was able to go off of those medications as well.

I hope sharing this info will be valuable to some of you. 

[irish]

Thanks so much for your reply. I will have to research the whole food diet. Right now On the Questran I am better but not as well as I could be. The other thing that I have wondered about is the fact that I have been having issues for about 3 years, but when I came home from my hospital stay for Gram negative Sepsis I became worse.

I was on about 4 IV antibiotics in hospital off and on because I am allergic to penicillin.When I went hime I was put on Levaquin for a week. I am wondering if the bacterial count in my colon is really screwed up. I did the probiotics and the yogurt but didn't seem to help. I am going to pursue this also. I have a past history of having an overgrowth of the anaerobic bacteria in my colon that needed to be treated with oral flagyl. Thanks again for posting. Irish

[Skylar]

Hi, I haven't been on this forum for quite awhile... came back today because I've finally seen a reliable rheumy that is looking at a diagnosis of SS along with RA and Fibro. I already have type 1 diabetes. Anyway, just wanted to explain why I'm suddenly here replying to your post. 

I suffered from bile acid diarrhea after the removal of my gallbladder in April 2007. It got so bad that I was running to the bathroom 10+ times just in the morning hours. After a few years I discovered an article where someone mentioned taking Questran for their bile acid diarrhea after gallbladder removal. I mentioned it to my dr and she agreed to prescribe it. That was in August of 2011.

I have been taking the Questran daily since August 2011 up until a few months ago. Anytime I decided to try going without it, I would end up in the bathroom within an hour of eating or drinking anything. Last June, I switched to a whole food plant based diet. After several months I decided to try not taking the Questran and see if the WFPB diet would have any impact on the bile acid diarrhea. It was a miracle... after all those years and many times of trying to go off the Questran, I was finally able to stop it and not run to the bathroom. I haven't taken it since and haven't had any problems.

As a side, I had also been suffering with GERD for many years and was on multiple medications for it. The WFPB diet also cleared up my GERD and I was able to go off of those medications as well.

I hope sharing this info will be valuable to some of you. 

Cndlgrl. Sounds like we?re eating the same or similar diet since Dr John McDougall is a whole food plant based (WFPB) too.

[irish]

I'm going to give you some information so you can do a little more research about bile acid diarrhea/malabsorption if you are interested. I know there are probably not a lot of people out there with it, but the IBS patients are sometimes misdiagnosed so this might help you out.

There is a website that is interesting: katescarlata.com/2015/05/12/lets-talk-about-bile-acid/ OK---I checked it and won't work. I had just gotten off the site so don't know what is going on. If you just enter her name and bile acid diarrhea you may well bring it up.--- Irish

She is a dietician with advanced studies I believe. This is a short article and it is a little deep at times but don't give up cause you may glean enough info to do more googling.

She mentions 3 medications used as treatment for this condition. These are Colestipol, Cholestyramine and Colesevelan. These are the same as Questran. The Questran is the first medication that came out to treat high cholesterol. It comes in powder and pill. I am taking small doses of the powder. The quest ran helps by working with the fatty acids of the bile.

The fatty acids/bile salts are over produced in the liver and there is not way for all of the bile to be absorbed so the extra is dumped in the colon thus causing the diarrhea.She talks a bout a test done with the still to check for fat to help with diagnosis but I am not sure if that is made available for all of the population. I will see if the website works. If not you can just insert it yourself and see how it works. Irish

[katie1111]

I have been off the internet for awhile and am just catching up.  About your nausea - I have been suffering with nausea for several years and just found something that helps -Sea Bands.  These are the bracelets that some people wear for seasickness.  I happened to read an article saying they are now being used to treat the nausea of chemo and morning sickness.  I thought - what have I got to lose and tried them.  They worked.  I put them on whenever I am nauseated and within 5 minutes the nausea is gone.  Supposedly they work by acupuncture, so you have to be sure you have the white button in the right place.  If they don't work, try readjusting the position.  I leave them on for a few hours and remove them, but the nausea stays away.  They are cheap and easy to carry.  I hope they help you.

Katie1111

[irish]

Thanks for the information on these bands. Irish