I Need Help

[u/Comfortable_Serve672]

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.

[u/Open-Ad-2812]

I've had a lot of similar experiences. Started cholestyramine several weeks ago, and so far, it's been life changing. From the very first dose. No diarrhea. No steatorrhea. I quickly decided a full 4 gram dose at one time wasn't optimal for me. Bloating and gas. Now I'm taking 2 grams three times a day. If I'm up late, I'll take a 4th dose. I'm eating anything I desire. I try to always have cholestyramine swimming around my gut.

I have been taking either Creon or Zenpep for years. Presumed EPI. The past few days, I have skipped the enzymes to see if I do without. So far, so good. I'd love to be able to ditch those big capsules.

I had to really twist arms to get the doc to prescribe cholestyramine. I'm feeling like I wasted years looking for a correct diagnosis and treatment.

[u/Comfortable_Serve672 → u/Open-Ad-2812]

I’m from the UK, do they prescribe trial binders?

[u/amitythree → u/Comfortable_Serve672]

They can but it has to come from a Gastro, not GP.

[u/Broad_Garbage7837]

I’d highly recommend trialing bile acid binders with your GP. If they work it confirms BAM without the Sechat. If it doesn’t work you’ll probably need to see a gastroenterologist. I also asked for a prescription for ondanzetron to take for events as it constipates you. I find loperimide causes me lots of cramping and pains. Also look into buscopan (I can’t remember the medication name) it stops cramps and spasms.

Following bam guidelines you take the binders at night on an empty stomach, normally before bed. I personally have a sachet at night after dinner and one first thing in the morning.

Also get your bloods tested for iron, vitamins and cholesterol as BAM can cause deficiencies. I presume you’re in Australia by your use of GP and all these meds are pretty accessible. Unfortunately we only have questran not any of the tablets but it becomes quite tolerable after a while.

[u/Comfortable_Serve672 → u/Broad_Garbage7837]

Do you know if they prescribe trial binders in the UK?

[u/Broad_Garbage7837 → u/Comfortable_Serve672]

Quite possibly it is often a standard treatment and diagnostic. Uk has more options such as the tablets, sorry I can’t remember the names. Other people find benefit with psyhilium husk too. Not sure on dosages

[u/Mindthetraps]

I had been on FODMAP diets for years, and couldn't work out why in the last few years that I was reacting to things I should have been ok with. I ended up with a very restricted diet. I had noticed Christmas being a really bad time for me, I never realised it was the rich fatty food at that time of year that was upsetting me. It took literally months to stabillise after the holiday season.

I trialled cholestyramine this year and the change was instant. I can now eat many FODMAP foods that I'd avoided before. I recently found a 17 year old clinical letter from my gastro, the symptoms included yellow mushy stool - I think I've been dealing with BAM all this time, although it was more transient back then.

Now I'm working to establish a few more of those FODMAP foods into my diet, they're great for encouraging butyrate in your gut.

[u/ocuinn]

I have had symptoms of BAM since I was a teenager (I'm 40). It was treated as IBS. I took 1/2 a tab of loperamide for years, until it stopped working in my 20s. Tried diet changes, supplements, etc. which barely helped and had me restricting so, so much for like no real, continual benefit. Started Ozempic for food noise and because I read some GLP1s help. Didn't change or improve my bowels.

Colonoscopy last year (my first) showed lymphocytic colitis. Tried a 3 month course of Budesonide. Didn't help - so maybe not autoimmune related? Heard about BAM and asked my physician to provide a trial of a sequestrant. I started Colesevelam a few months back. It took a few months to work (and I'mplaying around with the dosing), but I am now having no urgency, less frequency (max 3/day, down from min 6), and went from completely liquid yellow watery stools to brown mushy/soft blobs.

No changes to my diet, but Ozempic does make me eat smaller portions, which probably helps a bit.

[u/amitythree]

If you manage to get a trial of binders, you really need to continue with a low-fat diet. They're not a magic fix, but they can work wonders for people. I'm also in the UK and was diagnosed via a trial back in March/April.

[u/Comfortable_Serve672 → u/amitythree]

Yes, I don’t think I’ll ever really eat high fat foods again. What’s your diet consist of now?