# Can't believe it, doctor found a cause for my IBS.



## Aelise (Feb 10, 2012)

But not a cause for the cause... yet. I should explain.

I have IBS-D with all the classic symptoms, but my most annoying is easily the extreme bloating every night with awful gas. Seriously guys it's bad. I have had stomach "problems" (diagnosed as many things, never really went away) for about twelve years but got IBS about two years ago. Well I tried EVERYTHING. From smaller meals, to extreme dietary measures (not eating any wheat or dairy), to Xifaxan, to peppermint capsules... the list goes on and on. Probiotics, supplements, no caffeine/coffee, no alcohol. I've tried it all and nothing helps, EVER. Not even a little. Not a day goes by without having symptoms. Except for the days when I'm so sick I just don't eat anything!

Well I finally got a decent insurance plan and found a doctor that would put me under for an endoscopy - something I had been putting off for years - and she found the problem. I have excessive bile production (cause currently unknown, we're working on that) which is causing inflammation in my stomach and my duodenum. So not only is the pH reduced significantly, my duodenum actually has mucosal atrophy and is unable to do it's job properly. Bottom line: food is NOT breaking down the way it's supposed to early on in the digestive system, it's passing through my intestines partially undigested, and bacteria are feeding on it like crazy which is causing all my IBS symptoms.

Once we figure out why the bile thing is going on, we can put an end to it, rebuild the mucosal layers in my stomach and duodenum and stabilize the acid. Basically, we are working to normalize the digestive environment in there. And once that happens she is confident that my symptoms will go away because my meals will be properly digested and broken down the way they are meant to. The point of this thread is to make the point that even though my symptoms (well my IBS symptoms anyway) are in my intestines, a large part of the problem is actually in my stomach, and an endoscopy was an unexpected but critically important diagnostic tool. I thought I had tried everything and done every test possible for IBS but I was wrong, the endoscopy was the missing puzzle piece, even though it was recommended for my stomach!

What made my doctor seriously suspicious is the fact that my symptoms are like clockwork. The bloating sets in about 6-8 hours after I eat anything. Anything at all. And I have no symptoms if I don't eat anything. Keep searching people, the answer might be out there for you too.


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## M11 (Jan 9, 2013)

Hi Aelise,

nice to read that you found the cause, I think I have the same cause as I am as well like clockwork, emphasized when I have delayed meal (most likely the bile production starts like clockwork too, so if no food, that is even worse). Let us know the progress.


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## Jennifer7 (Nov 13, 2000)

Thanks for posting! I have the excess gas in the evenings at times. It seems I will have it for a while, then it will go away & then come back. I'm wondering, though, what you & your doctor are doing for this. How do you cause your body to produce less bile? And how will you rebuild the mucosal layers in your stomach and duodenum and stabilize the acid?


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## Aelise (Feb 10, 2012)

Jennifer, I ALWAYS get bad gas after eating. If I eat early in the day, I'll start to get gassy around dinner time. If I don't eat anything until lunch, it will happen later in the evening. It's all tied to my first meal. Some days are worse than others but in general it's always an issue. As I said, the only days I don't have problems are the days when I don't eat! My doctor's personal and professional opinion was, if I had "true" IBS (which as we know is a name that describes a set of symptoms, nothing more) then it would have responded to one of the treatments I've already tried... at least to some degree. I was off coffee, alcohol, wheat, dairy, and eating healthy small meals throughout the day... and my symptoms really didn't change at all. To her, that was an indication that something else was going on. Another thing I learned from her is problems in the stomach can cause IBS symptoms... basically, a breakdown ANYWHERE in the digestive system can cause IBS symptoms, because if food isn't digested properly (anywhere in the system) it's going to be problematic - especially if it's a chronic issue. It's worth noting that I had stomach problems 10 years before my IBS started.

Right now my doctor is ordering more tests to get to the root of the problem, so it can hopefully be fixed. Once we fix the problem, and prevent all the bile from doing what it does, the stomach and duodenum will theoretically repair itself. I will help it along with a healthy diet, possibly a liquid diet. That should normalize the system and stabilize the acid environment but if not, I will have to help things along with some acid pills. It's my understanding that you gradually increase the acid dosage, thereby raising the pH, and over time this will teach the stomach to produce the correct amount of acid and everything should be good from there. I will say that I have tried the betaine HCL (acid supplement) pills and for the two days I was able to take them faithfully, I saw a DRASTIC reduction in my IBS symptoms for the first time ever. Unfortunately my stomach was not able to tolerate them - because of the inflammation/weakened mucosal layer - so I had to stop. But my doctor said chronic inflammation generally = less acid output, lower pH, which will result in IBS symptoms. That said, I don't know how long the mocosal layers take to repair. I've done a little bit of research and I think it's a fairly quick process. A few weeks max.

Currently there isn't much I can do except continue to avoid the foods that have always upset my stomach. These include alcohol, raw onions/garlic, excess coffee, acidic foods, and really rich/fattening foods. The main thing you want to avoid when it comes to bile production is fattening foods. So it's a very low-fat diet for me. People need to eat fat to survive so I can't avoid it entirely but I can do my part by not eating anything really high in fat. Unfortunately, the IBS is going to continue until we fix the problem so I have to just deal with it for right now.

I will update this thread as this process continues but it will take some time. I don't have the gastric empty test for another week, and who knows what will happen from there.


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## AIRPLANE (Mar 15, 2004)

Aelise,

I was glad to see your post about the inflammation in the duodenom. I had an upper endoscopy and colonoscopy one year ago. I expected that after the tests that I would be scheduled for a follow-up appointment with the gastroenterologist to discuss things but that didn't happen. Right after the test, he did say that I had inflammation in the duodenom. He just gave me some aciphex to take to lower acid and sent a letter in the mail with the test results. I did take the aciphex for a couple of days but I have always felt that antacids make things worse and cause sharp pains and don't help the loose stools. And as I'm sure you know, there is a lot of talk about the dangers of not enough acid which we need to digest foods and defend against bad bugs.

He did mention the possibility of doing a gallbladder test after I told him that my father had his gallbladder removed and that my brother also had issues there. I don't know if that test- called a hidascan- would be of any use for the duodenom issue. I am a bit hesitant about any gallbladder related tests though because any abnormal results usually mean removing it which I've always been skeptical about since I've heard that it can make diarrhea worse.

I also went to the Mayo clinic last year and they had absolutely no comment about the inflammation in the duodenom. All they were interested in was my pelvic floor issues and only offered a solution for that which insurance won't cover and it's extremely expensive and doesn't have an impressive track record. I had a SIBO test which they said was negative and also a radioactive transit test.

Do keep us updated!


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## Aelise (Feb 10, 2012)

I am nervous about what they might find as I have read the same sorts of things about gallbladder issues. I've read that a lot of surgical procedures are frequent last resorts and many of them are not helpful. I am trying not to jump to conclusions until I know more. I am hoping that maybe with some medical intervention, and a bit of lifestyle/dietary modifications, I can keep things under control. The stomach symptoms, although very annoying at times, are controlled by me and the things I eat. If I stick to eating small amounts of the right foods I can be pretty pain-free MOST of the time. The IBS, on the other hand, is completely out of my control and impacts my lifestyle in a major way. That is my main concern. If I can find a way to stabilize the acid environment in my stomach I am confident my symptoms will go away.

I am definitely aware of the low pH theory and the benefits of acid (makes sense?), and I am pretty sure a low pH is responsible for my IBS symptoms. My doctor confirmed that chronic gastritis/duodenitis is going to result in less acid production and a low pH. And as I said, I was able to take the Betaine HCL supplements for about two days before they started to upset my stomach. It took a full pill which I think is around 650 mg. I took half pills later on, and those did not really help much. But a full pill, with every meal, made all the bloating and gas and grossness I usually deal with a complete non-issue. I have never felt so digestively healthy in YEARS. It's the only thing I've ever tried that really gave me results. I am excited and nervous to explore this issue further but looking forward to getting some results, hopefully some treatment, and maybe helping others along the way. I know first hand how difficult it can be to get to the bottom of things like this.

I will update this thread after each test/result I promise!


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## Aelise (Feb 10, 2012)

Okay I just realized I meant increase acid production, which would effectively REDUCE the pH. Got it all mixed up in my head. Whoops! I think everyone knew what I meant though.


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## AnnAtomy (Feb 23, 2013)

THANK GOD! Let's keep spreading the word to all those quacks who minimize IBS and tell you to reduce your stress. This is a physiological problem!!!!


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## BQ (May 22, 2000)

> This is a physiological problem!!!!


Yes it is,.... but it can be aggravated by stress. So stress management can help ease symptoms.


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## Aelise (Feb 10, 2012)

AnnAtomy said:


> THANK GOD! Let's keep spreading the word to all those quacks who minimize IBS and tell you to reduce your stress. This is a physiological problem!!!!


I think for some people it is very lifestyle-based. My brother had acute IBS from food poisoning followed by frequent binge drinking... once he stopped drinking for a while and ate a little healthier, his IBS went away. I also know of another girl who has IBS but she has the world's worst diet. Tons of soda, fast food, processed everything... it's no wonder she has chronic digestive problems. And another friend of mine (also a girl) has IBS but hers is pretty well managed when she avoids certain foods/drinks. She frequently indulges on her trigger foods (fresh leafy vegetables, alcohol, spicy foods) but when she avoids them she is just about symptom-free.

But me? As I said, I tried everything, I avoided ALL known trigger foods, exercised, and avoided stress whenever humanely possible. And I saw very little changes in my symptoms, no matter what I tried. Eventually I got sick of it and went back to my usual diet (which has minimal amounts of coffee and alcohol, moderate amounts of other triggers such as dairy and wheat). And even while I wasn't avoiding any trigger foods, my symptoms did not get any worse. It's always the same. My doctor said that for people like me, people who don't respond to any treatments at all, she believes the cause is more physical. Turns out she was right.

I think you are completely right when you say that doctors minimize the problem of IBS. It's a life-changing issue and should not be trivialized. For those of us that eat healthy, exercise regularly, and have relatively stress-free lives, it's not fair to assume we must be causing our own problems.


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## Kathleen M. (Nov 16, 1999)

Stress management can be an important part of treating any chronic illness. After all I've never heard anyone say getting all stressed out is the treatment for anything.










One problem is I think people tend to think of stress from having the chronic illness (involuntary stress) as somehow stress that can't be helped or can't be managed and it can be just as damaging as voluntary stress (which job I choose). Even if your life is voluntary stress free if you are in pain and having other distressing symptoms you have some stress. Physical stress still counts toward your total stress load.

Now saying the only thing for IBS is stress management is a doctor who is not keeping up with the literature and you need a new one, but suggesting stress management to anyone with a chronic and stressful illness as ONE part of their treatment plan probably is something most any doctor should do.

Also you can have "just IBS" and have it not be diet dependent and completely controlled by avoiding trigger foods. Sometimes the act of eating and the colon getting more active from any meal can set off symptoms.


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## urbanfresh (Aug 31, 2009)

Aelise said:


> I think for some people it is very lifestyle-based. My brother had acute IBS from food poisoning followed by frequent binge drinking... once he stopped drinking for a while and ate a little healthier, his IBS went away. I also know of another girl who has IBS but she has the world's worst diet. Tons of soda, fast food, processed everything... it's no wonder she has chronic digestive problems. And another friend of mine (also a girl) has IBS but hers is pretty well managed when she avoids certain foods/drinks. She frequently indulges on her trigger foods (fresh leafy vegetables, alcohol, spicy foods) but when she avoids them she is just about symptom-free.
> 
> But me? As I said, I tried everything, I avoided ALL known trigger foods, exercised, and avoided stress whenever humanely possible. And I saw very little changes in my symptoms, no matter what I tried. Eventually I got sick of it and went back to my usual diet (which has minimal amounts of coffee and alcohol, moderate amounts of other triggers such as dairy and wheat). And even while I wasn't avoiding any trigger foods, my symptoms did not get any worse. It's always the same. My doctor said that for people like me, people who don't respond to any treatments at all, she believes the cause is more physical. Turns out she was right.
> 
> I think you are completely right when you say that doctors minimize the problem of IBS. It's a life-changing issue and should not be trivialized. For those of us that eat healthy, exercise regularly, and have relatively stress-free lives, it's not fair to assume we must be causing our own problems.


How amazing that you have found some sort of explanation for your IBS-D. I have the same issue but have only had a colonoscopy, do you think it would be worth talking to my doctor about a endoscopy? It's not something I have ever thought about. I have tried all the available IBS treatments and none have had much effect so I always end up stopping them. I experience sudden diarrhoea, gas (although not bloating) and terrible lower stomach spasms with my IBS and it REALLY affects my lifestyle/quality of life.


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## Aelise (Feb 10, 2012)

urbanfresh said:


> How amazing that you have found some sort of explanation for your IBS-D. I have the same issue but have only had a colonoscopy, do you think it would be worth talking to my doctor about a endoscopy? It's not something I have ever thought about. I have tried all the available IBS treatments and none have had much effect so I always end up stopping them. I experience sudden diarrhoea, gas (although not bloating) and terrible lower stomach spasms with my IBS and it REALLY affects my lifestyle/quality of life.


I think you should, if you're willing. Especially because the pain you feel in your lower stomach area might be from your duodenum, which they view during the EGD. The endoscopy is much easier than the colonoscopy which you've already done, so no worries there. Same procedure but no preparation involved. Just don't eat anything after midnight - pretty easy! I also feel like, if you've tried EVERYTHING and you can't find any relief (like me) you should exhaust every possible option. One of those options is the EGD/endoscopy, another is a capsule endoscopy. If your doctor thinks it's hogwash you can tell them what they found in me. Excessive bile and duodenitis. Good luck!


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## Aelise (Feb 10, 2012)

Update: still no official diagnosis. I love my doctor but she is very slow with reading test results and ordering new tests. Drives me nuts. All biopsies came back negative from the EGD, so it's not h.pylori, Celiac, or B12 deficiency (had blood work too to make sure of that). She thinks the inflammation - gastritis and duodenitis - is secondary to excess bile. She ordered a gastric empty study, which came back negative. So I am waiting to see what the next test will be so I can schedule that and continue with the very very very very very very slow diagnostic process.

I will continue to update as things move along here. I was really hoping to have a diagnosis by now, this sucks.


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## Brownish72 (Aug 26, 2012)

Aelise, have you ever tested for SIBO??? If not; its worth investigating. Its an easy test, it simply involves breathing in a machine every 10 min for about 90 minutes.

Its under diagnosed, and one famous study out of California showed that of around 800 IBS patients with an undiagnosed problem, 85% tested positive for this condition called SIBO. (Small Intestine Bacterial Overgrowth)

It took 2 years of tests for me before one doc' asked if I had ever been tested. I said no, and BAM i had it. Its a tough one to treat, I"m still working on it, but atleast I know what I have

Good luck


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## urbanfresh (Aug 31, 2009)

Aelise said:


> I think you should, if you're willing. Especially because the pain you feel in your lower stomach area might be from your duodenum, which they view during the EGD. The endoscopy is much easier than the colonoscopy which you've already done, so no worries there. Same procedure but no preparation involved. Just don't eat anything after midnight - pretty easy! I also feel like, if you've tried EVERYTHING and you can't find any relief (like me) you should exhaust every possible option. One of those options is the EGD/endoscopy, another is a capsule endoscopy. If your doctor thinks it's hogwash you can tell them what they found in me. Excessive bile and duodenitis. Good luck!


Maybe instead I should take Zantac for a few days and if this makes a difference then it would be an indication that the problem is upper GI related? Then I would go down this route of investigation. Has the doctor actually put you on a specific med since the discovery from your endoscopy? Also, upper GI problems are usually associated with our types of symptoms such as pain/burning in your chest - do you get these other symptoms?

As for the endoscopy being easier, I can't imagine what is worse than a colonoscopy! I know you're in the States so maybe they heavily sedated you but in UK they hardly give you anything and my experience was rather awful. Hate to say things like that on these forums, but what I will say is that everyone is different and will react differently to any medical testing.


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## Bellita (Sep 6, 2012)

Aelise,
Please keep us posted on what is happening to your doctor's discovery. Even if it is minor, keep us posted so that we can also continue to find a cause for our symptoms.
Thanks.


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## Aelise (Feb 10, 2012)

Brownish72 said:


> Aelise, have you ever tested for SIBO??? If not; its worth investigating. Its an easy test, it simply involves breathing in a machine every 10 min for about 90 minutes.
> 
> Its under diagnosed, and one famous study out of California showed that of around 800 IBS patients with an undiagnosed problem, 85% tested positive for this condition called SIBO. (Small Intestine Bacterial Overgrowth)
> 
> ...


Not tested for SIBO yet, my doctor seemed pretty confident that my IBS was a direct result of the inflammation/hypochlorhydria in my digestive system. Definitely an avenue to explore if I can't figure this out though!



urbanfresh said:


> Maybe instead I should take Zantac for a few days and if this makes a difference then it would be an indication that the problem is upper GI related? Then I would go down this route of investigation. Has the doctor actually put you on a specific med since the discovery from your endoscopy? Also, upper GI problems are usually associated with our types of symptoms such as pain/burning in your chest - do you get these other symptoms?
> 
> As for the endoscopy being easier, I can't imagine what is worse than a colonoscopy! I know you're in the States so maybe they heavily sedated you but in UK they hardly give you anything and my experience was rather awful. Hate to say things like that on these forums, but what I will say is that everyone is different and will react differently to any medical testing.


I'm not sure if Zantac would help with IBS symptoms but it might help with gastric symptoms you have. I don't get a lot of burning or pain in my chest but I certainly get abdominal pain, which I know now is the duodenitis acting up. Have a nice solid bout of it right now as a matter of fact. From the gastritis I get nausea, and a dull aching in my stomach (below the sternum). From the duodenitis I get an aching, cramping feeling just above my belly button. It's pretty obnoxious, I'm glad I'm home in bed right now! As you can see I have quite a few gastric-type symptoms; not JUST IBS symptoms. It's no surprise that everything is related, really. I'd say if you have any gastric symptoms like nausea or heartburn or anything of that sort, you should explore the option of an endoscopy. Zantac did not help my symptoms at all really.

As for the endoscopy, you should find a doctor that uses deep sedation. A lot of doctors here in the US use what's called "conscious sedation" which is probably what you experienced. As of the last... I'm going to say 5-10 years, deep sedation has become more popular. Fortunately the only gastroenterology clinic in town uses deep sedation and it was awesome. The magic word here is Propofol . Out like a light, no recollection of anything. Could not have asked for a more positive experience. And let me tell you I was freaking out for about three weeks up until the procedure! I'd check around and see if there is anyone available to you that uses deep sedation. You won't remember a thing. Here, they use it for both endoscopies and colonoscopies.



Bellita said:


> Aelise, Please keep us posted on what is happening to your doctor's discovery. Even if it is minor, keep us posted so that we can also continue to find a cause for our symptoms. Thanks.


I will keep everyone updated. I can't be the only one here with this problem! I have an abdominal and pelvic CT scheduled in two days. Might lead to some answers.


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## Jennifer7 (Nov 13, 2000)

Aelise,

I can tell you that I had tried so many things it was ridiculous from natural to herbal to prescription....... for YEARS and nothing helped. But that doesn't mean it wasn't IBS. It just means I hadn't found the right thing/combination of things! Hate to say it, but I believe your doctor is wrong with that statement that something would have helped if it were IBS.


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## urbanfresh (Aug 31, 2009)

Jennifer7 said:


> Aelise,
> 
> I can tell you that I had tried so many things it was ridiculous from natural to herbal to prescription....... for YEARS and nothing helped. But that doesn't mean it wasn't IBS. It just means I hadn't found the right thing/combination of things! Hate to say it, but I believe your doctor is wrong with that statement that something would have helped if it were IBS.


I agree and don't agree. I think if you are highly strung and have serious IBS and no drug works then that is an acceptable scenario. We know from science now that the gut actually has a brain so for highly strung people that would explain why no drug works for IBS. I wouldn't even say the drugs for IBS to date are particularly revolutionary as science still does not understand exactly what causes IBS. In saying that, my logical mind says that there MUST be a physical explanation but who knows.

*Aelise*: To my knowledge, the NHS in UK will not offer full sedation for colonoscopy (I pleaded for this but still ended up with the useless "conscious sedation") or endoscopy as they like you to be awake so that they know if they are hurting you etc to avoid complications. I personally think it is an excuse to save money but that is that case either way. I do have private health cover now so I could check into this. However, I would be surprised if any doctor would refer me for an endoscopy when all of my symptoms are from my mid to lower abdomen; spasms and diarrhoea. To my knowledge I don't have gastritis and I don't really get pain or burning higher than my mid abdomen so I think mine is all IBS related, especially since the colonoscopy came back all clear. I think some people are just born with a kind of disposition and no matter what they do, they will always end up having IBS issues. Back in the old days they just called it 'bad bowels' and people just lived with it, I don't think much has changed since then. Don't know if you'll agree.


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## Aelise (Feb 10, 2012)

Jennifer7 said:


> Aelise,
> 
> I can tell you that I had tried so many things it was ridiculous from natural to herbal to prescription....... for YEARS and nothing helped. But that doesn't mean it wasn't IBS. It just means I hadn't found the right thing/combination of things! Hate to say it, but I believe your doctor is wrong with that statement that something would have helped if it were IBS.


As urbanfresh pointed out, I also agree and disagree. I think the case is different for everyone, but my doctor seemed confident that I did not have IBS based on my medical history and treatment attempts. Her point, and one that I agree with, is you should conduct a thorough evaluation of the entire digestive tract before you tell a patient they have IBS. In other words, IBS should be the diagnosis when all other possibilities have been thoroughly considered and evaluated. IBS is a lifelong sentence for many, and one without a proper treatment. If I had just accepted my fate as having IBS I could have continued to do further damage to my stomach/duodenum because I was neglecting to treat the actual cause of the disorder. My doctor's opinion was, if you conduct a thorough evaluation of the ENTIRE digestive tract (including biliary and pancreatic systems), and everything comes up clean, then at that point it is safe to tell a patient they have IBS. Otherwise you could be missing the root of the problem and the patient will not receive treatment.

I also agree with urbanfresh's point that to this day we still don't know exactly what causes IBS. I think if someone responds really well to dietary or lifestyle modifications then that's great, but for those of us who don't, it's time to consider other possibilities.



urbanfresh said:


> I agree and don't agree. I think if you are highly strung and have serious IBS and no drug works then that is an acceptable scenario. We know from science now that the gut actually has a brain so for highly strung people that would explain why no drug works for IBS. I wouldn't even say the drugs for IBS to date are particularly revolutionary as science still does not understand exactly what causes IBS. In saying that, my logical mind says that there MUST be a physical explanation but who knows.
> 
> *Aelise*: To my knowledge, the NHS in UK will not offer full sedation for colonoscopy (I pleaded for this but still ended up with the useless "conscious sedation") or endoscopy as they like you to be awake so that they know if they are hurting you etc to avoid complications. I personally think it is an excuse to save money but that is that case either way. I do have private health cover now so I could check into this. However, I would be surprised if any doctor would refer me for an endoscopy when all of my symptoms are from my mid to lower abdomen; spasms and diarrhoea. To my knowledge I don't have gastritis and I don't really get pain or burning higher than my mid abdomen so I think mine is all IBS related, especially since the colonoscopy came back all clear. I think some people are just born with a kind of disposition and no matter what they do, they will always end up having IBS issues. Back in the old days they just called it 'bad bowels' and people just lived with it, I don't think much has changed since then. Don't know if you'll agree.


You are right that deep sedation is more expensive. You have to pay for an anesthesiologist in addition to the doctor and endoscopy fees. An expense well worth it in my opinion. In more recent years, doctors have decided it is a better option because patients are much more comfortable during the procedure. A lot of patients out there have had bad experiences with colonoscopies and endoscopies, and unfortunately get diagnosed with a condition that requires frequent follow-ups. If a patient has a bad experience they are much less likely to schedule follow-up procedures as needed. Therefore, many doctors find it is worthwhile to make the procedure as comfortable as possible so patients don't fear it. I can vouch for this; if I had a bad experience I probably would not want to do one again. Given that it was so easy, I'd be just fine with it if they told me I needed to get one done tomorrow.

I'm not sure how it works there, but if you pay for health insurance here you can generally get away with certain demands. Keep in mind too that I thought my pain was in my intestines but it was actually in my duodenum this whole time (yes I know that is a portion of your intestines but you know what I mean). The point being, I could go into my doctor's office and request certain procedures even if the doctor wasn't entirely sure it was necessary. Unless you are asking for something crazy they will generally be okay with it. An endoscopy is totally a fair request. You could always tell them you have pain in your stomach, or lots of nausea, too. Why not? You gotta do what you gotta do and nobody has the right to deny you fair treatment ESPECIALLY if you are paying for it.

Still no diagnosis for me. Did my abdominal/pelvic CT scan yesterday. That was an odd experience. Word of advice if anyone gets one, the oral contrast will upset your IBS so plan to do it on a Friday or something when you can stay home the next day.


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## urbanfresh (Aug 31, 2009)

Aelise said:


> As urbanfresh pointed out, I also agree and disagree. I think the case is different for everyone, but my doctor seemed confident that I did not have IBS based on my medical history and treatment attempts. Her point, and one that I agree with, is you should conduct a thorough evaluation of the entire digestive tract before you tell a patient they have IBS. In other words, IBS should be the diagnosis when all other possibilities have been thoroughly considered and evaluated. IBS is a lifelong sentence for many, and one without a proper treatment. If I had just accepted my fate as having IBS I could have continued to do further damage to my stomach/duodenum because I was neglecting to treat the actual cause of the disorder. My doctor's opinion was, if you conduct a thorough evaluation of the ENTIRE digestive tract (including biliary and pancreatic systems), and everything comes up clean, then at that point it is safe to tell a patient they have IBS. Otherwise you could be missing the root of the problem and the patient will not receive treatment.
> 
> I also agree with urbanfresh's point that to this day we still don't know exactly what causes IBS. I think if someone responds really well to dietary or lifestyle modifications then that's great, but for those of us who don't, it's time to consider other possibilities.
> 
> ...


Thanks Aelise, the procedure is something that I will definitely think about and perhaps see a specialist about one day. I think the fact that I don't really suffer from upper GI symptoms is knocking me off the theory though. You mention pain in your stomach but I'm guessing this pain was located roughly underneath where your bra sits which is kind of where the stomach is? Which is obviously much higher up. Whereas my pain is all mid to lower abdomen (from naval to just above pelvic area) which I would more closely associate with lower GI problems like IBS. Also, I never really get a pain in my stomach, it is always a spasm, and 9.9 times out of 10 the spasm will ultimately lead to D - again, this makes me think that it is more closely associated with IBS-D rather than a problem higher up the GI such as the stomach. I don't get indigestion/heartburn/acid reflux or anything like that.


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## Aelise (Feb 10, 2012)

urbanfresh said:


> Thanks Aelise, the procedure is something that I will definitely think about and perhaps see a specialist about one day. I think the fact that I don't really suffer from upper GI symptoms is knocking me off the theory though. You mention pain in your stomach but I'm guessing this pain was located roughly underneath where your bra sits which is kind of where the stomach is? Which is obviously much higher up. Whereas my pain is all mid to lower abdomen (from naval to just above pelvic area) which I would more closely associate with lower GI problems like IBS. Also, I never really get a pain in my stomach, it is always a spasm, and 9.9 times out of 10 the spasm will ultimately lead to D - again, this makes me think that it is more closely associated with IBS-D rather than a problem higher up the GI such as the stomach. I don't get indigestion/heartburn/acid reflux or anything like that.


Lucky you! You are right most of my pain is above the belly button. Something to consider though, if you have pain in your duodenum, it can be mistaken for intestinal pain (nevermind the fact that it is part of the intestine). That pain is right above my belly button. My stomach pain is indeed underneath the bra a bit, higher up. From what you've said it sounds like your problems are further south. If you do suspect you have pain in your duodenum, however, that can only be viewed via endoscopy.

Right now it doesn't sound like you really need one. With my history of gastric symptoms it was a much more necessary procedure. Have you tried the betaine HCL supplements? I know their effects are debatable but I have to say, for the two days I took them, my IBS was GONE. I've tried a lot of things and at best get a slight reduction in symptoms (placebo effect). That was the first thing I tried that actually made me feel great. No bloating, no gas, no nothin'. Unfortunately after a couple days my stomach would not tolerate them anymore due to the gastritis.

I am currently experimenting with diet until my next specialist appointment in a couple weeks. I've tried a lot of diets but I don't think I've tried a super low-fat diet, which is what they recommend for biliary problems. Might help?


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## Aelise (Feb 10, 2012)

Update: my abdominal/pelvic CT came back clean. My gastroenterologist's assistant laughed when I yelled "DAMMIT" after hearing the news. Lol. My doctor is on vacation this week and doesn't have my chart in front of her, so she wants to review my chart and test results on Monday before deciding where to proceed and what to order next. Le sigh. I continue to be a medical mystery.

On the plus side, I have been experimenting with a very low-fat diet. Small meals multiple times a day, with 5 g of fat or less per meal. I'm noticing less bloating and an overall reduction in my symptoms after two days. Not sure if it's placebo effect or if I'm actually on to something here...


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## JuliannaCol (Jan 1, 2013)

Aelise said:


> Update: my abdominal/pelvic CT came back clean. My gastroenterologist's assistant laughed when I yelled "DAMMIT" after hearing the news. Lol. My doctor is on vacation this week and doesn't have my chart in front of her, so she wants to review my chart and test results on Monday before deciding where to proceed and what to order next. Le sigh. I continue to be a medical mystery.
> 
> On the plus side, I have been experimenting with a very low-fat diet. Small meals multiple times a day, with 5 g of fat or less per meal. I'm noticing less bloating and an overall reduction in my symptoms after two days. Not sure if it's placebo effect or if I'm actually on to something here...


I totally get the "dammit" feeling... I was actually waiting for something to come out of the looooong list of tests (including all those ending in cospy- but as you, nothing. I try -when i really feel on a very very bad crisis- to avoid fat on my meals. poached everything: peeled apples - babyfood-like- chicken breast, carrots, and then some white rice. I try to mix things up, you know? like, putting the poached chicken breast and calling it a "sandwich", or making very clear chicken/beef tenderloin soups (consome) with a little potatoe or angel hair pasta.

My grandma died because of a long history of gastrointestinal problems. She started with ulcerative colitis when she was 18. Being misdiagnosed with parasites, doctors gave her all sort of things that made her colon worse. Then, other doctors prescribed steroids to reduce the inflammation, what finally ended in a dreadful colostomy. I remember her craving for all sorts of things: sodas and rich foods. It was awful; so really, my "diet". and therefore, my "diet opinions" and recommendations come from watching her.

I hope your new diet trial works out and please do keep us posted on your findings!


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## looby_loo (Mar 19, 2013)

Aelise said:


> But not a cause for the cause... yet. I should explain.
> 
> I have IBS-D with all the classic symptoms, but my most annoying is easily the extreme bloating every night with awful gas. Seriously guys it's bad. I have had stomach "problems" (diagnosed as many things, never really went away) for about twelve years but got IBS about two years ago. Well I tried EVERYTHING. From smaller meals, to extreme dietary measures (not eating any wheat or dairy), to Xifaxan, to peppermint capsules... the list goes on and on. Probiotics, supplements, no caffeine/coffee, no alcohol. I've tried it all and nothing helps, EVER. Not even a little. Not a day goes by without having symptoms. Except for the days when I'm so sick I just don't eat anything!
> 
> ...


Aelise, I'm glad there is some light at the end of the tunnel for you.

Your symptoms sound very much like both mine and my mum's. My mum refuses to believe the doctors when they tell her that her bloated stomach is all down to IBS and has had all manner of tests and the only thing they can find wrong is that her bile duct(?) is enlarged but they didn't explain why that could be or what effect it may be having.

Can I ask, when your tummy is bloated, do you have a really solid spot just above the tummy button (and do you have any idea which part of the intestines this might be)?


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## Aelise (Feb 10, 2012)

looby_loo said:


> Aelise, I'm glad there is some light at the end of the tunnel for you.
> 
> Your symptoms sound very much like both mine and my mum's. My mum refuses to believe the doctors when they tell her that her bloated stomach is all down to IBS and has had all manner of tests and the only thing they can find wrong is that her bile duct(?) is enlarged but they didn't explain why that could be or what effect it may be having.
> 
> Can I ask, when your tummy is bloated, do you have a really solid spot just above the tummy button (and do you have any idea which part of the intestines this might be)?


Enlarged bile duct... interesting... I don't think I have a solid spot above the belly button? When my stomach gets really bloated from the IBS, it mostly just hurts from the stretching and weight involved. Wow that sounds gross when you type it out. A swollen belly is heavy, though, and it's uncomfortable. I think the area above the belly button is the duodenum. At least in girls. I have both gastritis and duodenitis and I can distinguish between when my stomach is acting up and my duodenum is acting up. By acting up I mean hurting.

I will have to ask my doctor if my duct was enlarged! The CT was "normal" but the radiologist frequently finds things that the doctor doesn't interpret as being a problem. Maybe that was a finding. I have a doctor's appointment in about 10 days, I will update with any information. I can tell you in the meantime what has helped me so far is a low fat diet. We are talking less than 10g of fat per meal. Closer to 5 is better. You don't want to be too stingy with your fat intake so I make sure to eat smaller more frequent meals so by the end of the day I've had at least 30g of fat. Has helped with the bloating tremendously. Give it a try!


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## rellybelly17 (Jun 10, 2011)

YAY!!!!


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## Aelise (Feb 10, 2012)

Okay had a follow-up appointment with my gastroenterologist this afternoon. My CT and gastric empty study were normal. She's effectively ruled out any Crohn's, inflammatory bowel, or anything else serious. She said the problem, as she suspected, is the bile. The excess bile causes inflammation and disrupts the digestion process. The cause for this isn't immediately apparent but given that my gallbladder appeared healthy, the only probable cause would be a dyskinesia of the gallbladder. We are first trying Questran, a medication that binds to bile and allows it to pass through the digestive system without harming the surrounding tissues. If that doesn't work, she wants me to see a Chinese herbalist in town. She said Chinese medicine often has a better handle over mystery digestive disorders than Western medicine does. She also said it's worth trying a very low dose tranquilizer to see if it "calms" my digestive system a bit. Push comes to shove, we can do a HIDA scan to determine the functional abilities of my GB. The only thing left to do is remove the GB which she said helps some, and doesn't help others. Because of the uncertainty she really did not want me to go running into surgery until I've tried everything else first. Fair enough!

She also said that the digestive system forms its own habits. Meaning, when a pattern of IBS gets started, the digestive system simply gets used to moving things at a certain rate (fast or slow). So sometimes if you use drug therapy, or whatever, for a period of time it helps the digestive system recalibrate in a lot of ways. So if the tranquilizers do work, for example, she didn't anticipate I would be on them indefinitely... just a period of a few months, maybe a year.

So I'm starting with the Questran, then trying Chinese herbalist, then trying tranquilizers. HIDA scan/GB is push-comes-to-shove #4. I'll keep everyone updated!

Oh, and for anyone considering the herbalist option... she said she's seen great improvements with some of her patients! One more thing to try, right?


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