MISDIAGNOSED FOR 14 YEARS | IBS was really Bile Acid Malabsorption

I was diagnosed with the wrong illness for 14 years - this is my journey to a real diagnosis.
* Please remember I am not a doctor *
** Trigger warnings: Discussion of pain/severe pain, depression, bowel issues

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👉 Instagram: @amypeachYT

[donalddattilo]

Amy, you aren't going to believe this but I have had the exact same experience as you. I know how severe the pain is. I was misdiagnosed for 21 years. Believe it or not my case was even worse because my Gall Bladder was removed (which is needed to regulate the bile) and I had intestinal surgery that re-sectioned my ileum, which is the part of the intestines that is suppose to recycle the bile back into your body. In a normal person 97% of the bile coming from your liver is absorbed back into your body and only 3% makes it to your large intestine. In your case (and mine) most of the bile was going on through our colons. People don't understand what you mean when you say it burns. They don't understand that it is a true chemical burn on your butt caused by the hydrochloric acid from your stomach shooting through you bowels 10 time a day. I finally gave up on the doctors and started doing my own research. I'm a nuclear engineer. I understand technical terms and processes. I started studying medical journals, medical procedures, etc. etc. etc. And I found a solution. It's not a cure but so far it has been working remarkably well for me. Let me explain how and why it works. As you know you have to take something to absorb the excess bile that is not being recycled back into your body so it can pass through your large intestine more easily. The medication you are taking now does that but it's awful stuff and doesn't always work the same way every day. The effectiveness of the "product" taken to do this is determined by the ratio of soluble and insoluble fats that are in that product. (in your case suspension powder). There is a regular food that has the perfect ratio of fats that is exactly right to correct your problem. This sounds so stupid simple that you aren't going to believe it. But it's true and it works. Here it is Eat 10-15 pecan half's at night before you go to bed and 10-15 more, either with, or right after breakfast in the morning. That's it. Stop what you are taking for at least one day and try the pecans instead for 3 days. You will notice the difference immediately. And it is all natural. Try this before you respond. and then do whatever you can to get the word out. You and I both know what it's like to live with Bile Acid Malabsorption. We need to do everything we can to save other people from the pain and agony we both understand.
Don Dattilo
San Diego, CA. USA

[sablechicken]

My daughter was using a public one room bathroom, and I was next in line, when a woman with IBS got in line behind me. I took notice as to how much pain she was in and pounded on the door, telling my daughter to get out because there was an emergency. That woman found me later in the store and made me feel like I as a super hero for such a small act of kindness.

[bingbashbosh]

The NHS fails greatly when it comes to detective work. They look at you for 2 minutes, then prescribe pills. They can’t wait to get you out the door. If you tell them you think something else might be going on, you are met with this “I’m a medical professional and you aren’t” attitude. The NHS sucks, let’s face it.

[cynthiahelmich]

Just had a CT scan, the first of many tests…my doctor thinks I need a therapist and antidepressants. Apparently, we can’t cry when we are past frustration.
You’re story sounds exactly familiar to me!

[drkirten]

I went through the SAME EXACT thing for the past 5 years. I’m a doctor myself and it’s been so so tough to get anyone to listen to me. I finally took Colestid and figured it out. I lost relationships, missed events, missed 5 years of my life because of this but we’re here better than ever. I’m here for you! Thank you for sharing your story

[watzittuyah]

Yeah it’s the same here in the U.S. It’s awful that these egotistical jerks are everywhere in the medical field. There should be a huge psychological exam for people entering, progressing through, and graduating into any medicine.
Thank you so much for sharing your story. I’m currently going through the same thing going from jerk doctor to jerk doctor. I feel alone as well and now I know that someone else understands and knows what it feels like.

[nightraven]

To answer the question at about the 23:00 min mark, in my opinion, because they made so much money from your fourteen years. And had they diagnosed you so easily, it would have also been just that easy to diagnose the multitude of others going thru it, and all of us to follow. All of that easy income lost to them? ... they pass us around from colleagues to colleagues like the drunk virgin at a frat party.
There's no money or careers in cures for the masses.
Listening to your story I'm literally in tears, and my chest and throat are so tight I can barely breathe, both for you and for myself. I actually can imagine how painful it was for you to revisit those horrors in order to create this video, and for whatever its worth, you have my most heartfelt gratitude that you did. You may not be a doctor, but you've saved lives with this story.
This video is three years old upon my finding it today. A drink of water and a second to catch my breath, because I've already seen that there's a part two.
Bless you Amy.
Thank you.

[anastasiaradionov]

I have the same exact symptoms EVERDAY. I keep getting diagnosed with IBS. I have no energy, extremely tired and dizzy. I can’t imagine living the rest of my life like this. I can’t have a job like this. I’m so frustrated with how doctors in the US are. And on top of it I don’t have health insurance. I honestly can’t see living my life like this anymore.

[juliasmith]

I think it’s important for people reading this to hear that BAM has other symptoms. In addition to the pain, severe BAM can cause full blown incontinence. The colour of the liquid will be yellow to orange. And the odour will be “unnatural” and very strong (upsettingly so). The colour and the smell are what helps differentiate it from IBS. Although my stool samples always came back as “Appearance: Normal, ” which was completely ridiculous.

I am British and 39 years old. I was diagnosed with severe type 2 (idiopathic) bile acid malabsorption (BAM) about 4 years ago. I disregarded the NHS quite quickly (for the reasons you described) and went private instead. I was diagnosed in a few weeks, but it cost me around £6, 000 in total. The private gastroenterologist was reluctant to order the SeHCAT test. Even when it was ME paying for everything. When the results came back as “severe, ” I said: “See, sometimes Google works!” He wasn’t impressed.

Most cases of BAM are caused by gallbladder removal, but (like yours) mine appeared overnight with no known cause. My SeHCAT retention is 3%.

Idiopathic BAM is actually caused by our bodies producing too much bile acid. More than anyone could absorb. The overproduction is caused by low levels of a hormone that controls bile acid production. The hormone is called fibroblast growth factor 19 (FGF19). Unfortunately, taking FGF19 supplements causes serious liver damage. But the point is - the medical community ARE working on this disease.

[bethcapone]

I was just recently diagnosed with BAM and am now on a sequestrant after 10 years of suffering. I almost cried during this video because you described my life and my experiences perfectly. One major difference is that I'm in the US. I have paid thousands and thousands of dollars year after year. I was not only sick, broke, but also suicidal. I had nothing to live for or to live on.

[ericgladwish]

Thank you for your video. After watching your video, I suggested BAM to my Gastroenterologist and she prescribed me cholestyramine. My life has improved 100% overnight! Cheers from

[charlyharman]

Had my diagnosis last week of severe bile acid malabsorption. Been misdiagnosed with IBS since I was a child so over 20 years ago. I was always told to "go on a diet", "lose some weight" "use laxatives" It is very frustrating! Thank you for posting and making people aware!

[judyhaskill]

My diagnosis came 8 months ago, after decades of IBS, the last two years have been a constant nightmare. My BAM may have resulted from taking the maximum dose of Metformin for almost two decades for Type 2 Diabetes. It didn't matter how close a bathroom was, I wouldn't make it. The diarrhea happened without any warning. Cholestyramine twice a day along with Imodium every morning is most helpful. In the past six months I've only had two horrific flare ups. What a relief from losing four days a week every week. I will be taking it for the rest of my life. Thank you so much for this video, it really helps to not feel so alone.

[xe-iuuo]

Thank you Amy for sharing your story. Everyone who suffers from an illness and must go through NHS doctors is facing the same dismissively attitude. They just want to push you out of the doors as quickly as possible and you feel abandoned with your continued symptoms that are misdiagnosed. You are left alone with stress and fears 😨 about your health, self medicating and very often feeling like you felt with these misdiagnosis.

[NetDirectMarketing]

You are not alone. This is the rule and not the exception and it is shocking and gaslighting narcissistic abuse... How it is not illegal is beyond me... the dismissiveness in the medical field. Absolutely despicable crockery. I'm glad you pressed on and thank you for making this video.

[amrnouh]

I am a doctor, and despite being not working in the UK, I have to say : I am sorry .. we are sorry

[slaydooma]

First day of Cholysterimine (?) First day of real relief in 4 years.

Thank you for this video. I was diagnosed with Celiac and IBS and have been scoped in every orifice. I brought this up to my doctor after watching your video and he okayed the prescription. You are a wonderful woman and I hope you are doing well. I went out for dinner with my family tonight and didn't feel pain. I don't know if it's a placebo or not but it's a pretty startling difference in just a day.

[michellemariespiritu]

I feel for you when some medical professionals do not treat women/ female patients seriously. Some think we are just overreacting, or some GPs suggested it was all in my “head”. But what I can say as an Asian woman, we are very tough- and would not go to doctors unless we’re dying (as we dont have NHS in the PH). I work for the NHS and after several “oscopies”, tests, hospitalisations and embarrasing flare ups- I finally got a consultation with a Gastro. He was very empathetic and listened to all my pains, I was very throrough with my explanation- and told him that I am not having a quality life due to constant stomach pain/ and diarrhoea (even with imodium). He acted fast, arranged an appointment with a dietician within the hour to help me sort a diet plan (helped a little- but still having daily pains and diarrhoea) and recommended for me to have the test in 6weeks.

I just had a SehCAT scan earlier, and hopefully it helps them diagnose what the real problem is.

You are right, IBS is not “Just IBS”- it’s a horrifying situation I would not want to wish on anyone. Bravo for your courage to persevere and help yourself. Sending love and prayers from Guildford!

[lisekautzman]

I have had stomach issues ever since my gall bladder was removed 30+ years ago. I totally understand the need to always know where bathrooms are and having to carry a change of clothes wherever I went. Just recently I discovered bile salt ( also known as ox bile) I take 1 tablet twice a day before meals. Almost over I noticed a huge difference in my bowels. I can now eat without having pain after only a couple bites or even feeling nausea and the pain and cramping is pretty much non existent. I am now 65 years old and really looking forward to having a very active life in my senior years. Best wishes to everyone that is going through this. Take care and God bless ❤

[emilykwaterhouse]

Hi Amy, just came across your channel. We are literally the same. I was told in my early teens I had ibs and was due to stress. I am now 30 and diagnosed back in 2020 during covid. I work for nhs and took me to work along other nurses to realise me going to the toilet 10x plus a day wasn’t normal ibs. You have to listen to yourself and others and basically stick up for yourself. We got this 💪🏻