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Discussion Starter · #1 ·
Does anyone know if a faulty Ileocecal valve is the cause of IBS(LG) I just made up this subsection of IBS sufferers you know who you are and you are my new best friends- because I read one a website which described the symptoms of faulty Ileocecal valve as like having a faulty sewer pipe back up into your kitchen (where contents from the large intestine move into the smaller) but any way sounds like LG to me. I wish someone would organise an itnernational seminar or conference on this (how about it Kathleen M PHD, or Snookered or others with connections to medical scientific insitutions) because I want to hear what all the possible answers and causes could be and also would like to be in a room full of people who totally understand this condition and care about it! I live outside of the US but would be prepare dto travel
Kim
 

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Discussion Starter · #2 ·
BTW someone should also start the IBS (LG) website and support group - because this subgroup seems we are the most misunderstood and dismissed of all IBS sufferers even the experts on this forum dont seem to understand or have any real solutions!!! Imagine how many people out there are suffering alone thinking they are the only ones in the world who have this horrible problem that doctors refuse to recognise and help; how many people have killed themselves over this; how many people who dont have access to a computer or who dont yet find this website (which is not well publicised) and I only found recently after years of amateur research on thsi topic thinking I was only one it makes me mad and I wish those of you who do have connections with scientific and medical institutions who have psoted to this IBS forum would get this going- it is not an exaggeration to say its a life or death matter for many sufferers
 

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Hey kimkim,I have not done research on the Ileocecal valve, but I believe only Trinity has been diagnosed with this problem. That doesn't mean that others don't have it, though. ...and I would love to organize a conference, but unfortunately, I no longer do medical research. I am now doing environmental engineering, so I don't think I have the same access to the medical school. Also, I am at a different school altogether, so that hurts the cause. Kathleen is an environmental scientist at UNC. I don't know if she would have better luck or not. There aren't really any experts, though, to invite to a symposium, so I don't know if this would work. Sorry I can't be of more help. I don't think the Ileocecal valve is my problem, but I could be wrong. It is something to look into. Do you have the link to the website?
 

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I'm unsure how a leaky valve at the far end of the colon would effect how gas is released from the other end. It isn't like one leaking would force the other one to leak.It isn't like it would leak stuff out of the body in anyway.Some of what I read on this seemed to indicate that if you do a barium enema of normal people with no symptoms a fair number will have some leakage of the barium up into the small intestine. So it is unclear what it means if you find someone with GI symptoms and the same thing.It seems it is considered mostly one of those anatomical variations you see in normal people with no symptoms from time to time. It is like redundant colon. When people have IBS they assume the redundant colon is causing it, but you see this anatomical variation in normal people as well. I'm not sure if we have data on % of people with GI issues vs not for either of those. But generally if you see something on a regular basis in normal people the inference is that it isn't the cause of the problem in people with symptoms. Now it is possible having certain variations may mean that IF you get a disorder or disease it may alter how bad your symptoms are, but that opinion of mine is not based on hard data, just that it makes some sense that somtimes normal anatomical variatios may be more problematic in some individuals when something else goes wrong.K.
 

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http://radiology.rsnajnls.org/cgi/content/abstract/227/1/52 talks about how much variation there is in the anatomy of this valve, but in the abstract didn't talk about if barium passed through it (but that may make it easier to see.I was able to get the .pdf of the whole article. 75% of these normal patients had reflux (leaking) of barium into the small intestine. 60% had the appendix fill up with barium. K.
 

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quote: believe only Trinity has been diagnosed with this problem.
This discovery...
quote:75% of these normal patients had reflux (leaking) of barium into the small intestine.
suggests to me reflux into the ileum is at least to some degree normal and not a medical "problem"
 

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I think it's a misconception that gas is leaking out of the rectum.It was named leaky gas on this BB but in my case, its really just an aura of a gas odor surrounding me. I don't feel gas passing or even feel gassy at all and anal sphicter is tight. I can feel and smell normal gas but can smell this gas only once in awhile. And it smells predominantly like a strong fart but with a sewery aspect, or sometimes food or a garbage-y smell. 2 Harvard affiliated doctors at MAss General and Brigham & Women both said my fecal odor was due to the incompetent valve and reflux of the colon bacteria into the small bowel. Both also said antibiotics should help but they only changed the smell slightly but still recognizable as gas. So I don't think gas is leaking out the rectum, the smell is just always present due to the location of the bacteria being in the small bowel, which is supposed to be sterile.I guess the gas odor just disperses or gets out by osmosis. Don't know about those of you who actually do feel something wrong in the rectum, I guess the gas could be leaking out surreptiously. But I think its still possible for some people to experience more distressing symtoms as compared to others with the same diagnosis. Just look at the range of symptoms with IBS. I agree most doctors know nothing about LG. It took me 6 years to find the first one to diagnose and several more years to find a doctor who tried to help with the problem, although treatment didn't really help. Most just said to learn to live with it
 

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I forgot to ask. If LG is not caused by the reflux of bacteria into the small bowel, what do you think does cause it. And I don't want to hear that LG doesn't exist or is just a figment of our imagination. Too many people on this board and the odor support group have it. Also I wanted to ask K. I also had a comprehensive stool analysis done by Great Smokies and had 0 bifidus in the colon. I've been on numerous probitics and L bifidus itself but without good results. My GI doctors were not impressed with the lab findings but did not mind if I took probiotics for it.
 

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I was diagnosed with SIBO, so I was put on rifaximin which is supposed to be the best antibiotic you can get. It helps with the smell but not the amount of LG so I quit taking them. Now, I have been eating alot of yogurt & taking calcium supplements with vitamin D because I read that calcium strengthens the ileocecal valve. I have not seen any results yet... Trinity do you have a problem with C or D? That is a good question you asked... if it is not the bacteria creating the smell, what the hell is!!! I think it is the bacteria. But not everyone with LG has a bacterial overgrowth, just like some of us have C while others have D. ???? what gives????
 

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Marabell, I don't have either constipation or diarrhea. I'm normal and still have leaky gas. I also don't have any problems with any foods or digestive or absorption problems. But for many years, I was very constipated and had to strain. One day I strained too much and felt something "pop" on the right lower side. Didn't know what it was but knew right away that something was wrong I immediatley got alot of sputtering and thumping on the right hand side and still do especially when I bend forward, And immediately got reactions and comments from strangers about gas odor. I was kind of perplexed because I didn't feel gassy or feel gas passing and didn't even smell it most of the time so I thought there was no problem. However I continued to get comments and nasty looks pretty regularly. Took 6 years for a diagnosis that made any sense to me. I had a single contrast barium enema. I didn't just have some leakage into the small bowel, I had prompt reflux and extensive reflux into the small intestine. Some people have said to have our rectal gas analyzed. That won't show anything. The rectal gas is normal. The bacteria in the small bowel is also normal, its just the location. It should not be found in such a large amount in the small intestine. It's just the location that's wrong, not an excess of bad bacteria
 

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quote:2 Harvard affiliated doctors at MAss General and Brigham & Women both said my fecal odor was due to the incompetent valve and reflux of the colon bacteria into the small bowel.
This really sounds a bit silly to me.
quote:I guess the gas odor just disperses or gets out by osmosis.
All gases produced in the gut diffuse out of the body in the breath in some small amount. That's true for everyone.
quote:Didn't know what it was but knew right away that something was wrong I immediatley got alot of sputtering and thumping on the right hand side and still do especially when I bend forward,
Have you checked for prolapse?
quote:Some people have said to have our rectal gas analyzed. That won't show anything. The rectal gas is normal. T
What does it mean for it to be normal?
quote:The bacteria in the small bowel is also normal,
What does that mean?
quote:its just the location. It should not be found in such a large amount in the small intestine.
Where has anyone counted it? And what does this have to do with the odor? By the way, you don't have any symptoms of having bacterial overgrowth in the small bowel, so why would even be suspected?
 

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quote:I think it is the bacteria. But not everyone with LG has a bacterial overgrowth, just like some of us have C while others have D. ???? what gives????
It could be the bacteria inthe colon. You don't need Small intestinal bacterial overgrowth for that.
 

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Discussion Starter · #13 ·
Hi everyone, I am really happy people are talking about this which is at least a first step toward finding a solution
. This is a quick post as its morning here and I have to go to work (and suffer the usual spontaneous humuliation that only IBS (LG) sufferers can understand.) But i wanted to let Trinity know I Have the EXACT same thing you have described here and have also done all the tests possible only to be described as normal and told to live with it!! As if!!!! I had the same lack of response to antibiotics and probiotics!!! There must be an answerSnookered thanks for your reply I understand that maybe a conference would not work no point getting Levitt as guest speaker as apparently even experts have no answers at this point. Still I would like to meet some of the people on this board some day (I visit America once a year or so anyway) just to know I am not the only one....there must be something we all have in common that is causing this???kim
 

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Discussion Starter · #14 ·
Oh I forget _ Snookered- here is the websiteoh I cant put it in here - dont know how to paste it in anyway it is at healing.about.com under the title Illeocecal Valve Syndrome the Great Mimicker- will come up when you put that in gooogle
 

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Discussion Starter · #15 ·
Oh snookered - forgot also - i read your response to flux on the other thread- and i totally agree with your response thankyou for saying what needed to be said- very coolkim
 

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Hey Kim,It will have to wait a couple of days before I can take a look because I have an oral exam on Wednesday, but for now I would go with what Kathleen says. She seems to know a good deal. Regarding the other thread. It's been said many times by many posters in the time I have been here. It really has no effect, which is a shame because I think some potentially contributing members are scared off. Am I the only one who pictures one of those comedies that takes place in a mental asylum where they always have the patient who thinks he is the doctor?
 

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Mandabell, was wondering why you went off rifaximin since it was helping with the smell. I really wouldn't care to have LG if it didn't smell!! I saw on another post you took Xifaxan. Is this the same medication?Well I'm supposed to go get stool samples done to rule out any bacterial overgrowth and am dreading it. Has anyone ever had this done and what isit you have to do??
 

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Need I remind Flux that you are NOT a doctor. I saw specialists and I will believe them any day over you. They said that you don't have to have diarrhea or malabsorption to have small bowel bacterial overgrowth. They symptoms I have are the odor itself and that's what they were trying to treat with antibiotics. They almost made me feel "better" but didn't get rid of the leaky gas, and that's my only real concern. You act like you know everything and you've been proven wrong many times on this board. I also asked for constructive advice. All you ever do is dispute everything but never give any real information or solutions. So when it comes to my posts on leaky gas, BUTT OUT!
 

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Trinity, did you have any tests done to see if you had bacterial overgrowth? I'm getting tests done(post above) and am not sure of all this. My Dr. seems to think I don't since I don't have diarrhea. I don't know if it's even worth doing.He also doesn't want to give me any kind of antibiotics until the tests prove positive. What do you think?? I'm really confused about what steps and tests to take. I remember having this since the third grade but I don't think I had LG just gas,which I couldn't smell than either. When I started high school that's when the LG happened.Unlike you I do feel pressure when I have LG. My Dr. prescribed me Buspar and Lexapro because I do believe alot of mine is nerves, hence the LG. Please post back on your opinion on this.
 

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Yes, I had 2 hydrogen breath tests. One was inconclusive but I don't know what the actual results were and it was done about 12 years ago. I was treated with Tetracycline. It changed the smell only slightly but did not get rid of it. It cut the sputtering down within 3 days but the sensation did not improve after the initial decrease. I had another breath test maybe about 6 years ago and that one was normal. The GI doctor who had ordered it said that the test was unreliable and she treats Symptoms not tests and presribed Neomycin for 2 weeks. Same results as the tetracycline except I got D about the 11th day - 14th. The LG did not really go away so I don't want to take anymore AB, except maybe the new one that everyone else is on, but only if they improve LG. I'm still waiting for others to post their results. Bonniei suggested Lactulose as an alternative and that sounds even better but right now I don't have any upcoming appts with my GI and I'm still reading everyone's posts. I wasn't too impressed with my results on AB's and they do cause stomach upset so I don't know if it's worth it. I would go over pros and cons with your doctor
 
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