MISDIAGNOSED FOR 14 YEARS | IBS was really Bile Acid Malabsorption 

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.

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

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!

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.

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.

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.

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 USA!!!!!!!

Doctors don’t care what’s wrong with the patients, they just say whatever dumb thing comes to their mind. 😂😂 Doctor visits are like 5 minutes long and have to wait two months for your appointment.

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!

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.

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.

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.

On my 4th time watching lol. Would you mind putting IBS in the title so people looking for answers will come across this video. This NEEDS to have the awareness spread. I had a 3%absorption rate when it should be 15

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

I’ve had my “IBS” and “GERDs” symptoms for 18 years. I don’t have flare ups that often but when I do I honestly just want to die sometimes. Thank you for this video. I am going to look into this.

I’ve lost all respect for doctors. I understand there’s a few who are good and helpful but most doctors suck and have absolutely no idea what they’re doing. U come in they do a regular check up. They say u look fine and send u out. They are so terrible. I’ve learned, researched and helped my own self more than any doctor has.

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 💪🏻

You are so amazing and so strong for telling us all this horrible tragedy ! Seriously I feel like many doctors should start taking patients seriously instead of hiding behind their desks and not caring at all 😣 Amy you are such a strong woman it’s amazing to see how you’ve dealt with this ! 💕

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 ❤

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

You just told the story of the life I’m going through for 7 months now and I’m in tears listening to you 😭😭😭😭

God doesn't give lessons to the weak, his lessons are for his warriors. He's keeping them in shape for what's next. He's giving you first-hand knowledge of the strength that is within you. For every negative there is a positive. You don't always see the good when you're still to close to the bad. Give it some time, I'm positive you will be enlightened as to why you've had to endure all that you did. Life's journey is lighting the way to your purpose.

This sounds familiar. At the age of 9 I was wrongly diagnosed with IBS. At 22 I was correctly diagnosed with bile acid malabsorption and I have been on bile binders ever since( now 52). I only have a problem if I forget my bile binder . The difference between IBS diarrhoea and bile acid diarrhoea is it feels like pooping lava.

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.

Hi Amy - this is exactly my experience of the NHS. I'm a nurse and have worked in the nhs for 23 years and have a great passion for it, but......I too was told I had IBS, and for over 25 years. I was finally diagnosed with bile salt malabsorption 4 years ago, after a burst gall bladder resulted in emergency surgery, during which I suffered a full respiratory arrest on the operating table. I always knew it wasn't IBS but wasn't listened to either.... Still have issues but at least I know what it is now. I empathise with your emotions, I really do.

I totally get how you felt, I was told I was crazy and its in my head.

Thank you Amy, for sharing your story, there are so many people like myself who've been diagnosed with 'IBS' an umbrella term for many gut/bowel problems, where as it's actually something else! Well done and all the best.

Was diagnosed with BAM after 30 years (yes, I mean it, 30 years) of symptoms. Have now been prescribed Colesevelam so hopefully my endless suffering will be reduced or ended.

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.

I’ve had IBS most of my life and don’t think it’s correct diagnosis as I’ve done everything to fix this without success. Doctors in UK don’t help with IBS so you’re pretty much on your own…

Thank you so much for making this video. I was first diagnosed with IBS 15 years ago. It was incredibly severe. I ended up bedridden. I had the same dismissive treatment from doctors. I was once told to go to A&E by my GP. The doctor at the hospital examined me but my body was so tender by then I screamed in pain and he stormed out leaving the door to the corridor wide open as I layed half naked on the couch. I was in tears and was begging for someone to help me. The nurses wouldn't even help me ring for a taxi. My weight had dropped to 7 stone and I was in my mid 30's. This was my lowest point. I suffered for years but gradually got better (it probably wasn't quite normal but it was near enough normal considering what I had been through). I also had fybroids for years so sometimes it was difficult to know what was causing what. Now it has started again and is getting increasingly worse week by week and I dread what will happen to me. Will I lose my job? Will I end up bedridden? And it is not being taken seriously again. But after much research I now know about BAM which is how I ended up watching your video. My experience sounds like a carbon copy of yours. I have now been ill for 6 months and have been told I have to wait another 3 months just to see a consultant but they are going to redo the sample and blood tests "again". GRRRRRR!!!!! It is also so frustrating when they tell me I should be happy because they haven't found anything wrong with me and they don't understand that that just means left to suffer. So I am going to demand to see a Private Consultant and demand to be tested for BAM. Your video has been a tremendous help, seriously. Thanks again. xxx

This has been my life for years! I was just diagnosed with BAM yesterday! ( I’m 65)I had never heard of it but the biggest clue to my situation was my gall bladder had been removed. That should have been a red flag but instead I was told I had IBS due to stress! Thank you for your candidness!

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.

I predict AI may soon be able to diagnose better than doctors.

From my own personal experience, there’s a lot of misdiagnosing going on in the medical field these days. Not all doctors are bad, but there are some they are. Careful out there.

Really milking this aren’t you?

Medical gaslighting is becoming very common these days. For me the most insulting thing was not the doctors telling me that I have psychiatric problem and not gut problem, for me the most painful thing was my own parents saying that I am making all this up because I am a lazy bum and don't want to work and move up in my life. Eventually I was diagnosed with pancreatic insufficiency which also caused chronic intestinal inflammation. If a doctor is unable to understand your case it's very easy for them to say that it's all in your head and you need psychiatric evaluation.

First of all, I want to say that you are so brave for putting your story out there. I was recently diagnosed with Bile Acid Malabsorption last June after being in hospital for 3 weeks with chronic pain and a lot of other symptoms. I had been misdiagnosed for seven years. I was 18 when I got a proper diagnosis but for those seven years, from the age of 11, I was out through consultant after consultant. I was told countless times that I was making it up for attention, that it wasn’t that bad etc. I felt like no one believed me and that I was going crazy. I felt so alone and helpless. Until one amazing consultant in June believed me, cared about helping me and diagnosed me with BAM. But I look back on all of it and wonder how I got through it. I missed out on my teenage years, I lost all friendships and became isolated because the illness was so debilitating. Thank you for sharing your story. It doesn’t make me feel so alone. I agree that word needs to be spread about BAM and the stigma of getting diagnosed around it. I will pray that you continue to get better. Xxx

I’m listening while having a flare up and crying.

Same here ... I was misdiagnosed for (less) but 2yrs of IBD-D and horrendous treatment by my doctors and GI specialists in Oz only to find out my gall bladder was full of stones and I had classical gall bladder stone issues with some stones over 1.3cm cube size...and had to have emergency surgery due to serious gall bladder attacks and 2yrs of constant diarrhea..all missed by one of the biggest hospitals in Australia due to incompetent doctors at one of the biggest hospitals there... incompetence bordering on malpractice to be honest....the idiot doctors and specialists and dietitians and GI specialists in Australia first said it was motility issue then they said it was H.pylori then they said lactose intolerance then they said amoebiasis then they said SIBO and there was zero bacteria or parasite or H.pylori in my stools or blood tests...no evidence at all ...and when they have me a colonoscopy in Oz they STARVED ME AND GAVE ME NO FOOD FOR 3.5DAYS! I WENT CATABOLIC AND LOST EVEN MORE WEIGHT LOST so much muscle...after 2yrs of misdiagnosis I lost 15kgs and my BMI was down to 15 all thanks to my incompetent doctors also... They even said I had disaccharide intolerance..then at the end they gave up and said well maybe we can't find your intolerance or issues you just have to restrict your diet and add foods one by one ...so I know how you feel..I felt I was dying too...I was saved by an Asian doctor in another hospital who correctly diagnosed me.

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!

My heart goes out to you. I cried with you watching this. I only discovered bile acid malabsorption three days ago after my worst fear almost came true while working with a client. I’m 58 years old, have tried every diet you can think of, and have been wondering how much longer I could go on like this. I gave up on doctors many years ago (in my mid 20’s). Back then although I had symptoms, diarrhoea was sporadic and not such a huge issue as it has been for the past 25 years or so. Your story is so much my story though regarding the anxiety and the emotional part of this. I’m now eating a carnivore diet (what I thought was my final option) and that is what brought this to a head and has allowed me to find this answer. I’m about to try managing this with natural remedies so wish me luck. Thank you for being so honest and vulnerable. It’s incredibly hard to do. I really hope you continue to improve and get over this. The hardest part to get over is the anxiety and fear of a flare up happening but I hope with time that can happen.

I have bile acid malabsorption because of SIBO.

I didn’t know people with gallbladder can get this I tough this was a no gallbladder problem, I really think I have this.

I'm running into this in the USA right now. The doctors are useless and dont actually want to help me.

I'm so sorry you went through that, but so thankful you made this video. It took me 26 years to get diagnosed with endo/ado. While the diagnosis was different, the doctor- hopping, the dismissal, the being diagnosed as IBS and the IBS being downplayed and not understanding anything, and the fear and confusion, all of it. My experience was different, but I relate so much to yours.

Doctors are garbage…..Alls it takes to realize this is to go through a health crisis with horrible symptoms. I’ve been going through all types of horrible symptoms for over a year…heart palpitations, sporadic bp spikes, stomach issues, heartburn, constipation, tightness in chest lost 80lbs in a year and other symptoms. Cardio doc says I’m fine and to “just go live your life” Gp has no clue, and gastro doc has me doing a battery of test. Oncologist cleared me of cancer and says good luck. Finding a good dr is like finding a needle in a haystack. They only have knowledge of their specific area of study and lack a broader understanding of how the body works as a whole. I’m sure there are good ones out there, I just haven’t found one yet 😞. Glad you finally got your diagnosis and I pray to God it doesn’t take me 14 years I don’t think I can handle another year of feeling like death is right around the corner but chooses to knock on my door and run away multiple times a day.

Thank you for sharing your experience. It’s scary how similar your journey is to mine. How are you doing now? A few years later. I started having issues in my early teens and I’ve done all the stuff you have been through. I can relate so much when you mentioned that you would gladly do any test they offered as it maybe was a solution of all this, but in the end it just caused disappointment. My life has been so hard missing out on getting friends, the job I wanted and so much more. I for some reason came up reading about BAM and then found this video. I think it’s a mystery no doctor have ever mentioned this for me. I feel sad that I have to be my own doctor. I will bring this up for discussion and see what they say. I’ll never give up trying to get better. I’ll keep you updated! / Andy

I literally thought of making a video like this. Im always stilll healing but i was in anorexic conditions not sleeping or able to digest a thing and pumped with antibiotics for no reason! 2 years fully bed ridden. Treated so poorly by NHS nurses in hospital too ;( it makes me so angry that i was left alone to figure this out. Increasing stomach acid and probiotics saved my life! Not a single GP mentioned any of these.

Dear Amy, I have had your symptoms since I was a little girl. Most doctors and specialists eventually/mostly came up with anxiety and of course I was subscribed a range of meds. I then just in the last mont, visited a Physical Nutritionist who is venturing on IBS , dairy allergy, gluten. I eliminated everything and am eating relatively little. Still toileting up to 10 times a day. My daughter stumbled on BAM last night. This morning I watched your talk. This is me. Darling Amy, I now am going to have the SeChat test to see if that is it. I know it is. I am 71. I will let people know my results. Thank you Caroline in Australia

I have EDS, another hard to diagnose syndrome. I was 44 before I was diagnosed. I feel your pain. I feel your loneliness and frustration. It's ok to cry. Those of us who understand weep with you.

Questran changed my life and my families life. I also went through hell for years with dismissive doctors and tests. Doctors took my healthy gallbladder out and after I started Questran for bile diarrhea. I think it was bile diarrhea all along. My mom and sister also had same issues and take Questran powder. Doctors over dx IBS. We had this for years with no answers. I had awful diarrhea in college and young adult years. I knew every bathroom and hated traveling. Questran gave me (and my family) a life back. I wish I would have never allowed them to remove my gallbladder.

Diagnosis yesterday after 15 years. I'm crying with you. Its just awful. I'm hoping questran will change my life. Thanks for your story. X

This is literally my story... wow! It's uncanny how much my story matches yours... I had a recent check in with an IBD nurse who asked me if I told my GI I had my GallBladder removed, I did, the very first appointment I had and he dismissed it... she thought this was strange and booked me straight for the test! I'm currently waiting on a SeCHAT scan, I'm praying that something comes of it because I'm fed up with this pain! Much like yourself! Thank you for sharing your story!

Thanks for sharing your story. I am happy to hear that you are feeling better. I have recently diagnosed with IBS but I strongly believe that that is not the problem I have. My GP has never heard of a SehCat and to my request she commented " I cannot even prescribe it because I don't know what it is". As if ignorance is a justification. I am in my journey of contacting different specialists and I would have a question for you. Does BAM have the following symptom: stomach that empties fast, gurgling of hunger in an hour after eating a substantial meal, waking up hungry and with gurgling stomach in the middle of the night? In addition, I occasionally have sharp pain in my gallbladder area. Done all sort of test, nothing came up. Thanks for your reply or for anyone who can help!

$100 a month in the USA for the little packets and I was misdiagnosed for 32 years. The USA is even worse. I've been through hell, still no good solution for me.

I would definitely blame NHS without reservation!!!!! Incompetents!!!!!! Glad you have relief!

A very inspirational and well put together video. I have experienced the same. It took me 45 years to get diagnosed. Lots of “ it’s just IBS” . It all comes down to cost I’m afraid. But the suffering is so wrong. Unfortunately Doctors don’t even know what this is when you return from your consultant. So they are still messing my situation up. One doc told me I don’t need them. I am researching as am worse then ever and I believe it’s because you can’t take Questran then just stop them . I’m glad they have helped you. Never be ashamed of getting upset.

lol, same here, i went undiagnosed from the age of 12 to 24ish, found out I was a crohny. I'm now 34 and just started bile salt sachets........ So guess that's 22 years. I had to laugh at your stories, so relatable. Literally your whole experience is my experience. Although I don't think they didnt help you because you are a woman, I saw about 20 doctors before I got diagnosed with crohns disease, and that was after constantly being fobbed off and told I had anxiety problems. It happens to everyone, guys just don't bother going to the doctors as much as woman though.

Wonderful video. I am 85 years old and my have the same thing. At least when I go the doctor in a few days I kind of know what to talk to him about.😮

Amy, OH MY GOD. Thank you so much for this video - Its so weird it is literately my story but with you telling it. My name is also Amy and my issues started when i was 15 and i have only just been advised by a specialist at 27 that i may have bile acid malabsoprtion i am being reffered for a SCAT scan - misdiagnosed all my life with ibs obviously and taking imodium nearly everyday to deal with the diarrhea! Having to take countless times off work with people not understanding why, cancelling plans, freaking out and being scared sh*tless to travel for long periods of time, stressing out my parents - I am crying while watching this. I really hope that i can get treatment now and get better.

This hit so close to home!! I got my gallbladder taken out when i was 18, im 24 now, and ever since then i have had the worst pain, the worst stomach aches, having to go to the toilet so often in the worst possible times that I felt so sad and isolated, honestly never talk to anyone about it other than my family who turned it into a running joke. Finally, five years later after having gone to many, many doctors I finally received an answer without being dismissed or being told everything was 'fine.' I literally got diagnosed last week, and honestly for the first time in a really long time I felt like I wasn't going crazy or that my body just hated me, there was a reason for everything happening. Sadly, in Ecuador where I live, medication isnt available to treat this right now which is gutting honestly, but at least I know now that there is something to help and I have a diagnosis which puts my mind at ease a little. It's conditions like these where you cant really talk to anyone about that make it so hard to live normal life and it ends up being the thing you think about the most instead of enjoying life. Im glad you finally got an answer and youre working through it!! my best wishes and congrats on your pregnancy :)

I’ve had 41 separate tests in 3 years. I am going through something similar to you. All they do is prescribe more PPIs, which just aren’t solving the problem. From super fit and active, to painful days and almost unable to work. When you tell them this they stare at you like you’re an idiot.

I love how brave you are telling your story. Love from Philippines

I had my gallbladder removed in 2008. Soon after, I progressively had diarrhea. It then changed into sudden severe pain, acidic, and immediate. When the "wave" would come I would get cold sweats severe pain and nausea. My doctor blamed my diet and told me to stop eating sugar. After that didn't work, I was told "I chew and gulp my food to fast". After that, I was offered anti depression medication as if it was all in my head. I stopped talking to doctors. I decided to only eat at night, which caused me to gain 45lbs in the 8 years I suffered. Finally, i spoke to a doctor and within the first ten seconds he says "sounds like bile acids from getting your gallbladder out. Why hasn't anyone help you? It's simple. Take two MG's of Colestipol a day". I will be on this prescription for life, but MY GOD my life is changed! I can eat in public and I've lost all the weight i gained. Ask your doctor about Colestipol/Colestid

I have even asked about this to my doctors and as you were - dismissed and doubted. I am very proud of you for doing this video.. Lots of love to you for your future to be happier.

Does anyone have bright yellow stools?

You have just summed up my life so accurately between the ages of 18 to 28 that it's spooky! All the frustration with GPs and never being taken seriously. Avoiding social situations and panic over long journeys. Having to wave goodbye to a career that I loved. I share the same emotions and feel that much time was wasted in what should've been the best years of my life! (Sounds dramatic, but if you know, you know!) I'm honestly so grateful to the gastroenterologist at Royal Berks Hospital that FINALLY took my seriously, after 10 years of battling with GPs, and sent me for a SeHCAT test. Literally the next day on binders was the best day I'd had in a decade! Like you I'm still managing the condition and finding my way but hopeful for the future. Thanks so much for sharing your experience!

I have gallstones so my problem was with bile as well but I had extreme stomach pain

That’s modern medicine for you. Doctors think that because the have degree in medicine that they know everything and always gaslight their patients. I’m happy that you were finally able to get the right diagnosis after all these years.

I've had bowel issues since I was about 13, I'm now 30. My brother has Crohns, and my Dad recently got diagnosed with Stage 4 bowel cancer. For the last year, I've been to gastrointestinal places for tests, many many tests. I finally got sent for a Sehcat scan a week or two ago, and they've just diagnosed me with Bile Acid Malabsorption. I feel your pain throughout all of this video. It's tough, however given that my Brother has Crohns, I would have expected them to fast track everything to find out what my issue was. :(

Metamucil. Not a cure but certainly a product that makes it possible to have a functioning life.

Great video..basically I have the same story minus the passing out. Thankfully pills greatly help me now. covesalam. Thankyou for your story.

Did you have upper right abdominal pain? I have severe upper pain and was just diagnosed with this after colonoscopy.

One thing that I don’t understand about bile acid malabsorption is that the usual medicine used is cholestyramine, colesevelam, etc. but these medicines doesn’t actually make the bile acid be reabsorbed. So wouldn’t it be just treating the symptoms but not providing a real solution for the problem? Because then the liver would probably have to be working always producing more bile acid from new cholesterol instead of “recycling” the reabsorbed bile acid

Sounds like my story, the Carnivore/ Lion diet has healed me with no meds, hope you are doing well, since i see your video was posted may years ago

Going through this now. The many dismissive doctors over the years have had me give up more times than I can count but its only getting worse. Some episodes land me in the hospital and STILL no one can figure it out. Hope you are doing better. I'm glad you got answers finally ❤

You’re very brave to share your story. Unfortunately I am pretty sure it’s a common scenario. I think you’re being very fair about your experience of the medical profession. They are SO behind… clueless when it comes to the gut. “IBS”… what about finding an underlying cause. It’s an agonising & protracted, lonely journey:-( The pain alone you suffered is appalling. You will be helping others!

Thank you Amy so much for sharing your story. It's through hearing from people like yourself who have suffered with a misdiagnosis that I've been able to suggest to doctors what is wrong with me. I'm mid way through a SehCAT scan right now, which I'm hoping with lead to treatment. Thank you for sharing your feelings so candidly, I've often felt the same. I can't imagine how hard it much have been for you as a teenager, I'm so sorry you had to wait all those years to receive proper care and diagnosis. All the best and thank you again xx

There is more profit in treatment than cure

A lot of doctors seem to have a God complex.

One more thing here ... Oxalate dumping also sounds same Green watery stools...

Thank you for your video. I am from Toronto Canada and have suffered for 12 years of not teavelling, missing celebrations etc until I had Agoraphobia and letting it affect my mental and emotional state. I finally found a doctor who would spent 2 minutes actually listening to my story and he has perscribed a binder for BAM. I hear your emotion amd frustration and although I am sorry you went through all that I am comforted to know I am not alone. Thank you again and Many Blessings

Confused...do you have pancreatitis too?

I love you for making this video. I've had stomach problems 'IBS' since I was a child. Buscopan does absolutely nothing for me either. I take Nexium every morning & night. Doctors are soooooo dismissive regarding stomach/intestinal problems. My friend had Crohns & it took years for them to diagnose her at which point alot of damage had been done. This was in the early 2000's. You poor thing having to go through that. 😘

Thank you, @AmyPeach for telling your heartbreaking story. I feel for you, having had the same treatment form doctor and specialists. Happy your story had a happy ending, at long last.

This is hard to watch because I know how that feels. I'm struggling and still get told IBS. I do everything they say. And it is random and it affects work because it limits what jobs I can have and I can't call in. I just have to come to work and go to the bathroom so many times. Today I have been here only a couple hours and already gone to the bathroom 3 times. And once before I even left for work. I feel horrible and wish I could go home today. The only thing that has made a difference for me is weed. Which I can only use at home. So evening time is really the only time I get some relief.

Are you taking enzymes

I can relate to this so much. 😢 I have had “IBS attacks” with pain so bad, that I’ve felt like dying wouldn’t be the worst option. Having fibromyalgia, joint hyper mobility syndrome, anxiety and depression, I feel I am dismissed by my doctors every time I see them. “Oh it’ll be your anxiety.” “It might just be your pain tolerance.” “It’s JUST a functional thing.” It’s so disheartening and incredibly hard not to lose hope. I try not to go to the doctors now, as I’ve lost confidence in them, and in my own experience of what is going on with my body. I’m so sorry you’ve had such an awful time with pain and I’m so glad things are looking a lot better for you. I hope it continues. 🤞🏻 x

Thank you so much! Bless you. What a lovely woman you are. I suffer too. No answers. I suspect this. Did you have constant back pain too? Did your abdominal pain radiate to your back, that is?

Hi Amy, your story really resonates with me.. I know the hell that you’ve been going through only too well. I was diagnosed with IBS 26 years ago! For years I’ve been trying to get the GP to understand that there was more to it than “just Ibs”.. I sadly lost my daughter when she was just 15yrs old & my severe flare ups were put down to child loss! I finally got referred to a gastroenterologist as my abdomen pains have been horrendous & my life has become very unsociable due to my life revolving around the toilet. I am unable to go out alone & Motorways are a definite no no. I have a toilet first aid kit in the car for long journeys! I also have a blue key which is very useful should I be stuck somewhere in a queue. I’ve had many tests, all are fine! Medication (buscopan was useless) includes mebeverine, codeine, loperamide & more. I’ve received a letter from Stafford hospital stating that the consultant is more or less certain that I have BAM & he’s ordered a seHCAT scan to confirm it.. I know it’s not ibs, I’m on sleep medication & get woken in the night with urgency! The burning is like acid, the pain is unbearable most days. Anyway, I’m so glad that you finally got an answer & are on a slow road to healing somewhat. I really hope I do too! Take care & thanks for sharing your story. Anita X

What a beautiful video and your story is identical to mine. 17 yrs of wrongly diagnosed with IBS, many doctors with not really caring, pervasive surgies, diets, loved to travel but stopped long ago, couldn't eat a public places bc of my flare ups, brought me so much anxiety and panic attacks. Im trying Questran for my 1st time today. I hope and pray this will change my life and i can go back to my real self. 🙏

Thank you for sharing, I am only a year in but my experience of the NHS is in line with yours...and the waiting between appointments whilst your life falls apart is unbearable. The only thingbthat means they take me seriously was an episode of pancreatitis and substantial weight loss, the rest they make you feel like its in your head. Nobody has mentioned BAM so thank you, a new line of enquiry for me. I hope your health continues to improve x

You are an amazing warrior! Thank you so much for sharing your inspiring story. People like us need to get the word out about this sort of treatment!

What color were your stools?

Thank you for being so brave and sharing your experience!

I’m a nurse in the US and I have absolutely no use for 99% of doctors. Nine years ago I awoke with mind numbing pain in my shoulder blade that radiated down my arm. Saw many doctors, chiropractors, therapists, ect. to no avail. After an MRI it was decided that the source of my pain was coming from my cervical spine. I ended up having a fusion of 3 vertebrae with no relief, a spinal cord stimulator with no relief, and so many injections it’s a wonder I didn’t spring a leak. Lost the ability to work, lost my friends, and my life, suffering unrelenting pain, unable to perform even the simplest of tasks without severe pain. Not long ago, I saw a new doctor for something unrelated and just happen to tell him about my severe arm pain. He walks around the table I was sitting on, asks me to lean forward and presses on my back asking ‘is this where it hurts’. I exclaimed yes! That’s where all the pain is coming from! Turns out, all this time I have had a rib that is out of place!! I was elated that finally!!! someone was actually listening to what I was describing and knew what the problem was but pissed off at the needless suffering, surgeries, and loss of nine years of my life due to incompetent healthcare. I now understand why it’s called ‘practicing’ medicine.

I've had to come back here after my second sehcat scan... I too have the bile acid malabsorption. Ever since I was young I never believed it and found out about it and found your channel through research. Amazing how I'd seen 4 doctors over a few years about it all told me IBS. I was having something else investigated and asked for the sehcat which has given me a diagnosis. Thank god! 🎉🎉

I was also diagnosed wrong After my gallbladder removal 2 years I have struggled like hell changed the doctors no reason Now I figured out it’s malabsorption

I appreciate your vulnerability and sincerity in this video! It took 12 years for me to practically diagnose myself with BAM and ask for BAS after being told by a GI it was definitely not the cause of my symptoms. Many doctors(Gastros) have been so insensitive and don't seem to understand that the gap between appointments(6 months or so) is daily pain for those with IBS, so there being no hope of improvement and diagnosis coming out of appointments can be so debilitating. My symptoms included the almost constant pain, but the worst and most controlling part was the false urgency. Soon after eating, I would feel a surge through me and run to the bathroom but would not be able to go. I would have to live around the toilet until I was finally able to go(sometimes over an hour), and it was almost always diarrhea when it finally happened. Some GIs tried to tell me this was constipation, but it really never felt like that. I've spent weeks of my life on the toilet with urgency, unable to go. It got to the point where I developed an eating disorder, although no Dr. I've had seemed to think it noteworthy. I would not eat until I got home from school, no breakfast or lunch for a decade. I would go to basketball practice after not having eaten all day. I had, and continue to have, such a terribly fickle relationship with food, which should naturally be a positive one. I also lost my appetite and hunger almost entirely about 2 years before I started BAS, and I was told to "just eat," and that I couldn't be given appetite enhancers unless I had HIV or cancer; meanwhile, I was going 2 days without eating and would only do so out of necessity. I also had to resolve that on my own(found correlated vitamin D and B12 deficiencies and asked for tests), and I'm somewhat there, but not all the way. It makes me angry and sad having lost all those years of my life that could have been spent exploring and developing my personality. Sometimes I wonder if who I am is actually who I would have been without all of this, whether I'd be more outgoing or sociable. I missed so many opportunities, including a couple trips to Europe, just out of fear of eating something and not being near a bathroom. And even if I was near a bathroom, would I have urgency and not be able to go. I was in constant fear and hyperaware of my gut and how it felt. You really don't get much compassion either. I've been bullied by teachers for excused absences and talked down to by doctors; one tried to convince me that I was so sick in the morning because my anticipation of feeling sick induced it, basically a modern chicken vs. the egg argument. All it would have taken was more humility on my Drs.' parts to acknowledge that they are not aware of every illness(although it was discovered decades and decades ago) or more effort by my parents early on to search for any possible, treatable cause like I eventually did, or, most importantly, perhaps, a country that does not treat its citizens and their illnesses as commodities from which to profit. I truly believe that, at least in the USA, more effort isn't put into diagnosing and considering underlying causes to IBS because of how much money IBS patients bring in with wasted tests(multiples of the same every time you switch doctors) and constant visits(20%+ of gastro visits if I'm not mistaken), not to mention trips to the ER, which are incredibly pricy here. It is a virtually "safe" group of symptoms and illnesses for most doctors to refuse to sincerely try to treat because they are not life-threatening. Multiple studies are showing the prevalence of BAM in IBS to be at least 1/3 of those with IBS-D and around 1% of the Earth's population. It needs to be addressed clinically and in school. So many things you said in this video were word-for-word what I have been telling people for years about the hole-ridden umbrella term that is IBS. Thank you again for putting this out there!