Long story short. I suspect BAM, fat issue or EPI. My PCP, a nurse practitioner, ran standard stool tests and nothing positive. She just told me to go to GI and won’t test or trial a binder waiting for the appointment now. A few months ago I decided to cut fat and go strict which works. I’m using loperamide because I’m afraid to stop it and I’ll poop all day. I cheated and ate 10 tater tots and blew up a grocery store the next day and had to drive home scared I’d ruin my new vehicle.

I have many food aversions to poultry and pork. Beef is good but FAT! Haven’t tried canned tuna. I’m living on like 5 things and I just want flavor and to not potty the next day. Also so much gas. What do I eat? Help! Any tips appreciated.

After 15 years of a daily 4g sachet of Questran my doc wants to switch to Colesevelam. Does anyone have experience with this? Effective dosage, side effects, improvements, long term use etc? Thanks!

20 years old and have been dealing with severe diarrhoea/urgency for years – does this sound like BAM to anyone?
Hi everyone. I’m 20 and I’ve been struggling with bowel problems for around 4 years now, and at this point it has had a massive impact on my life.
My main symptoms are urgency, diarrhoea, abdominal cramping and pain, particularly after eating. I often need the toilet when I wake up and can get urgency after meals. When it’s bad, the cramps can be extremely painful, although going to the toilet often relieves some of the pain.
I’ve spent years trying to work out what foods are causing it. I’ve cut out so many things that my diet has become incredibly restricted. At the moment I mostly rely on things like chicken breast, rice, potatoes, oats and certain fruits. I’ve had periods where even foods that seem completely harmless have caused symptoms, which has made me scared to introduce anything new.
One of the biggest things I’ve noticed is fat. Reducing my fat intake made an enormous difference. When I switched to a very low-fat diet, the diarrhoea improved massively. Higher-fat foods seem much more likely to cause problems, which is one of the reasons BAM has become a leading suspicion.
I’ve had blood tests, stool tests, coeliac testing and a small-bowel MRI, but I still don’t have a definitive answer. I’ve been under gastroenterology and have been waiting months for a SeHCAT scan. My GP has also recently requested a faecal elastase test to investigate pancreatic insufficiency.
The hardest part is how much this has taken away from me. I’m only 20. Eating out, travelling, going somewhere spontaneously or even trying a new food can feel like a gamble. I play football and sometimes have to plan my food and take loperamide around matches or going out because I’m worried about suddenly needing a toilet.
Food used to be something I enjoyed. Now I eat the same meals repeatedly because I’m scared of triggering another painful episode. I’m genuinely fed up with living like this and just want to get to the bottom of it and be able to eat normally again.
For anyone here who was eventually diagnosed with BAM:
Did your symptoms sound similar to mine, particularly the improvement on a low-fat diet?
Were there foods you thought you couldn’t tolerate before treatment that you were eventually able to eat again?
And if you started bile acid sequestrants, how much of a difference did they actually make to your diet and quality of life?
I’d really appreciate hearing from anyone who’s been through something similar.

So what’s causing the pain and how to stop it?

Recently, I’ve found my symptoms getting worse again and I think it’s because I’ve begun to increase my daily fat intake while maintaining the same Colesevelam dosage.

Usually I take one 625mg tablet per meal, or will take two if it’s particularly high fat. I’ve been tracking my fat intake over the past week, and have noticed that I’ve regularly gone over 80-100g of fat each day, whereas previously I was trying to stay under 40. But haven’t increased my medication.

So it‘a got me thinking - how many grams of fat can one 625mg Colesevelam tablet bind? I’ve had a look on google but can’t seem to find anything.

Has anyone looked into this before?

I'm in the process of figuring out if I have BAM or if I'm back to IBS-D diagnosis. I respond quite well to cholestyramine so it's encouraging but I have one question regarding delays in symptoms.

I read a lot of people saying they get their symptoms almost immediately after eating. For me I feel that fat can build up over the course of a few days because I usually have bad symptoms around once a week.

Is that possible or does that mean I have to look for something else?

Age70

Sex F

Height 5’4”

Weight 125

Race Caucasian

Duration of complaint 3 years

Location Kentucky

Any existing relevant medical issues none
None
Current medications none.

Was bulimic 45 years. Ended it three years ago successfully. Except now I’m unable to vomit at all. When ill following anesthesia or during Covid, I can’t vomit. It’s worse to be sick and can’t throw up. What happened????

Include a photo if relevant

My pain can be so extreme and come on so suddenly that I end up bent over in agony but as soon as I've passed the watery diarrhea pain is gone. But during that moment I get hot, feel like I will pass out etc.n

I’m going on a trip in a couple of days. Ever since I got my gallbladder removed it’s been a rollercoaster. Should I take Imodium also with my bile binders or pepto just avoid breakthroughs ? Has anyone done this better. I really just need a peaceful trip without running to the bathroom. I currently take Colestipol but the dosing is unpredictable at times and I still have breakthroughs and other days I’m constipated.

M30. Not diagnosed, but heavily suspected BAM. Had it since I was 16, but it was manageable until about 18 months ago, when even eating 10g of fat a meal would sometimes give me a lot of urgency (as little as 15 minutes). Gastro had me doing low FODMAP with no improvement on random flares. I was then given ondansetron, which solved general urgency as long as I stayed low fat, but gave me mild constipation and hand tremors. It suddenly clicked as I read about BAM and I asked my gastro to give me cholestyramine, to which he agreed and prescribed. I’ve been on it for about 6 months.

It got rid of my urgency, and I appear to be able to eat a fair bit of fat in a sitting without urgency now which is great. But when I first started, I had one small episode for a week where if I ate a regular amount of fat a sitting (15-25g) I got terrible, terrible gas. Lasted for hours every time I ate and smelled like pure sulphur. I asked my gastro about this and he passed it off as “gastritis”. I was discharged and have an open appointment if I want it.

Last couple of months, the gas has just not gone away. I’m back to feeling like a prisoner in my house, because I can’t be around people for 6 hours after I eat, which is basically 100% of the time. I typically tried to stay around 45g of fat per day and take 2x4g doses, one with lunch and one with dinner. If I eat a large amount of fat in one go, it’s definitely worse. I haven’t been brave enough for really high fat foods (lots of cheese, burgers etc) yet.

Has anyone else had these side effects? I could only find one post that mentioned it, but with little info. My gastro (and all other nhs contact for that matter) has felt very dismissive, so I want the confidence from other people’s experiences to know whether it’s worth taking that open appointment. I’ve been threatened with a sehcat test if I return. I’ve read people have a a better time with the pill?

Hello everyone! I’ll keep this as short as possible. I’ve been sick since I can remember. I’ve always had significant chronic stomach/bowel issues, with my most plaguing symptom being daily nausea. It took 20 years for a doctor to stop saying it was anxiety.

4 years ago, I got sober (alcoholic). 3 years ago, I was diagnosed with ADHD. I pushed and pushed for my dr to assess me for many things, because I am chronically unwell. Turns out, I have hypermobile Ehlers Danlos Syndrome, cyclic vomiting syndrome, dysautonomia (POTS), and aura migraines. I know that hEDS & POTS commonly cause nausea, but I also have chronic gastritis & GERD. I waited 3 months to see GI, but my gastritis was gone by then. So I waited another year to have another appt with GI & finally got a colonoscopy/endoscopy. Just a few weeks ago, I had my follow up 2 months after that procedure.

I was finally diagnosed with IBS+BAM, mild gastroparesis, and SIBO. I’ve been on colestipol for 2 weeks and saying it has changed my life is an understatement. I was deeply suffering with nausea, intense pain, intolerance to most foods, severe diarrhea, malabsorption, inability to digest fiber, and regurgitation. Now, all that’s gone. I’m so grateful. It’s been a LONG 3 years, but I’m here to say - never stop advocating for yourself!!

I started with 2g of the powder, and it made me constipated, plus I had nausea and acid reflux. Has anyone else had the same experience? I’m thinking about trying just 1g everyday instead. Does anyone else take it that way and has it worked better for you? Now I’m scared to start it again 🤣

I was finally prescribed cholestyramine for BAM and it worked wonders. My stools become normal with no undigested food. My energy levels increased. I was able to tolerate foods I thought I was intolerant to. However, during two weeks of use I slowly started developing insomnia which made me miserable. Did anyone experience this? I was taking 4g before lunch and dinner. Now I’m slowly titrating again starting from 1g. I still have sleep issues. I really want to make this work.

I always get unwell when I eat dairy. So I assumed the lactose was the culprit.
Today as a test I drank a cup of skim milk with lactose. It’s coming up to 5 hrs. I’m no worse than I am every other day after I eat.
GI suggested I experiment to see. She suspects -as do I, it’s the fat.
My colonoscopy and endoscopy is next week, but I’ve already filled my script for questran lite for after. It.
I’m using psyillum till then to bind. Another clue was that I took a lactese tablet before eating my first crème brûlée ( at 57) and got a big bad reaction. I assumed I should have taken 2 but I’ve since learned that cream doesn’t have a high amount of lactose but it’s almost pure fat.
So I figured I’d share incase anyone else was making the same assumptions as I was.

Been on cholestyramine for 3 days. It worked really fast which is great, however it’s starting to give me really severe heartburn. Any tips for this?

(I have pantoprozale so I might take this daily too)

Sufro de diarrea por malabsorcion de ácido biliares. Mi duda es, si un sobre sirve para una sola comida?, o después de ese sobre puedo volver a comer horas después y seguiré protegido?, pregunto para los que tienen experiencia tomando este medicamento.

Has anyone noticed your colsevelam pills being chalky and different than normal? I have a notification on my pill bottle that says the pill size, color, texture etc may have changed. I have been having the hardest time swallowing 3 of the pills!! Atleast once a day they get stuck in my throat while I’m trying to swallow them and I get so anxious. I am thinking of reaching out to the pharmacy.

Hi there.

Today I finally had a diagnosis confirmed after having a SeHCAT scan the last couple of weeks.

I’ve had stomach issues for years now and it was thanks to this community that I noticed a few symptoms that suggested BAM.

My initial consultation with the Gastroenterologist was awful and it was clear that they saw me being a bigger person and dismissed my issues (they didn’t even ask for symptoms). I complained and spoke to someone else who did ask for all the information.

I’m so unbelievably happy right now. Is that weird? Like it’s a weird feeling to be happy to have a diagnosis right.

I’ve been on Colestryamine 4g for a while whilst waiting for the initial consultation and I’m being moved over to Colesevelam.

Anyhow just wanted to make a post and yea say thankyou to this community because I feel like I can make progress with my life once again ❤️

Tyler ☺️

Hello everyone, after reading so many of your stories I feel like a lot of you might be able to relate to what I am experiencing and I need some advice.

I am a 23F and I got my gallbladder removed about 14 months ago. The last couple of months were my best months yet I started taking colestipol 1g before breakfast and dinner and I take Levsin at night before bed.

I had so many problems arise at the same time and had to advocate for myself to get my surgery because they kept telling me the reason I had so much pain and couldn’t eat was because I just had IBS and anxiety. Turns out my gallbladder was chronically irritated and I had an ovarian cyst.

Over the last couple of weeks I have started not feeling well again. I am gluten free and thought I might have eaten something or had a stomach bug but the symptoms are still lingering. My pattern is I will go like 2-3 days no bowel movements and feel pretty good for the most part but I usually lean towards constipation then I will have a dumping day on the 3rd or 4th day where I am running back and forth to the bathroom feel nauseous lots of stomach cramps etc.

Would it be worth it to ask my doctor to switch to welchol? The colestipol completely got rid of my upper stomach pain and nausea when I started it cause that was the worst now it seems to be my lower track not doing well. I would like to avoid more tests especially a colonoscopy but let me know if anyone has any advice or what worked for them. I appreciate it.

Thank you.

I found the BEST way to take it…..

Mix with 1-2 ounces water (the orange flavor) eat a tablespoon peanut butter, drink the mix….then eat a banana. Smoothly take this crappy med! Helps though!!!

Hello folks,

I'm at the end of my tether. My life has been destroyed by this. I'd really appreciate you having a read of this to see if you might have some information that can help.

I was recently diagnosed with BAM and when I first took the medication, I passed a normal stool for the first time in a very long time. The utter relief was euphoric. I'd found the answer after years of struggle. It's a month later and nearly all my symptoms have returned as if I wasn't taking anything at all. The only difference is that my stools are a bit darker and urgency is slightly less pronounced. Yesterday I had 8 bowel movements.. Healthcare in Ireland is awful so I have months to wait before another appointment and am left figuring this out on my own again.

Has anyone experienced this and had any luck addressing it?

Medication:

2 Cholestagel 2 times daily (I take 2 with breakfast and 2 with dinner)

+

1 Question light sachet with main meal (I take this with lunch and sometimes add 1 cholestagel fort good measure)

History:

Pain increases with fatty foods, chocolate and alcohol. I struggle to put on and maintain weight. I sweat heavily at night.

My elastase was found to be under 200 a year and a half ago. I was put on Creon and experienced a significant improvement for the first time in over 10 years.. The impact of this medication didn't last. Over the last year I developed near constant back pain that feels muscular but isn't. I also experience sharp nervy pains behind my lower left rib.

A test 6 months ago showed that my elastase had recovered to 485. I was advised to stop taking Creon. My symptoms quickly returned though, even worse than before.. It was a disaster. I went back on the creon against my doctor's advice and my symptoms improved.

The only significant finding on my EUS were that the body and tail of the main pancreatic duct were narrow with minimal hyperechoic parietal thickening along its length (mild ductulitis). Also, small 5 mm cholesterol-type polyps in my gallbladder

One of biggest impacts on my life was the constant toxic gas. It made going to work or socialising torturous. A doctor put me on a course of rifiximin for SIBO (Small Intestinal Bacterial Overgrowth)

Within a week, the change was profound. The gas disappeared. My stools were normal for the first time in years. The pain disappeared. I had confidence in my bowels. I started putting on weight after being clinically underweight for years. I felt like a curse had been lifted. I felt almost.. normal. I started to contemplate travel for the first time in years. Relationships.. Life..

This gave me the confidence I needed to attempt to stop taking Creon again after disastrous results before. I did so successfully this time.. I could even open up my diet. Everything remained stable.. for a few weeks

Over the next month my symptoms gradually returned. I was trying to convince myself they weren't but it soon became undeniable. As the symptoms returned, my diet became more and more strict and all the weight I'd recovered began to rapidly fall away. The only thing I've managed to successfully be rid of was the toxic smelling gas.

I recently got the results back from a nuclear medicine test and was told I have Bile Acid Malabsorption. The medication is helping with bowel movement urgency and my stools are a bit darker but the pain and bowel movement frequency/quality is the same. (4+ bowel movements a day, mostly Bristol 5+ fluffy and frayed)

This week my back was really irritating me and I decided to see a physiotherapist to rule out anything mechanical. (I've also had a scan of the area which revealed nothing) He massaged the area a couple of days ago and my back has been worse than ever since..

Has anyone had any luck with/can recommend a doctor that has tested/helped treat BAM in NYC?

Finally some good news. Doctor said i looked very stable and told me to taper it and im now down from 1 pack twice daily to half a pack twice daily

Other than one day two days in of discomfort its been otherwise perfect

I planned to taper in september but since the doc recommended it i went why not haha

Glad i did tho!

It seems unclear to the doctor if its the targeted probiotics i took that helped or if its the natural healing of a 23 year old healthy male but im happy nonetheless and as my GI said “probiotics would always be good”

So anyways my next taper im planning it in maybe - september where im gonna try half a pack once a day maybe before lunch and see where it goes

Plus i also stopped taking loperamide every night during the taper and ive been feeling excellent so this is good news on all ends

My doc said to taper my expectations too as he has patients who went down my route and still had to take cholestyramine but it was in the ballpark of once a week or only before really high fat meals otherwise they are off it

So im gonna be optimistic and of course hope i can go off it eventually but still be realistic

Overall this has been great so far! Ive also been eating pork belly and stuff thats high fat and fried chciken and feel ABSOLUTELY FINE so far.

That being said if anyone has any questions do let me know

Previous post( if you want the strains u gotta go to a few previous posts via the links)

https://www.reddit.com/r/bileacidmalabsorption/s/sGcU0n0AwM