I might be able to help some of you

sorethroat · Post by **sorethroat** » Fri Nov 13, 2009 2:30 pm

Hello,
Nope, starting the PPI today, and still waiting for and exact date for the endoscopy which will hopefully happen sometime in the next month or so.

LPR, as well as bile, is looking like what this might be, which seems a lot less straightforward than just plain old GERD, so I hope the GI doctors have heard of this medical condition.... otherwise it's going to be a battle.
I had never heard of it before last night, but it seems to make so much sense!

I've had a chest X-ray in the past year for a chest infection, and it didn't show any hernias so I don't think that's what's going on.

Not happy about the increased right of esophageal cancer either, and I do wonder if it's true, that PPI have contributed to the rise in ii.

mindyb · Post by **mindyb** » Mon Nov 16, 2009 2:07 am

bbforyears-
I'm seeing the doctor Tuesday (really his assistant) before I get to see him
Would you mind sending me a mini-list that you would recommend that I ask they check for?
I'm trying to sort the possible issues a bit so I can be as clear as possible.
Thanks in advance!!!!
Mindy

bbforyears · Post by **bbforyears** » Mon Nov 16, 2009 3:03 am

Hi Mindy,

First of all I would definitely recommend the endoscopy. In addition to any damage from the acid this would tell them if you have bile in your stomach and/or esophagus.

There is also a test which is a catch all for all types of reflux. It is a 24 hour impedance test which measures both acid and alkaline (bile & other digestive enzymes). I hope they have that test available in your area.

Good Luck! Hope all goes well for you on Tuesday! I am having another endoscopy on that day and will keep everyone posted....

xoxoxoxoxo

mindyb · Post by **mindyb** » Wed Nov 18, 2009 2:16 am

Hi guys...
Well thanks to the posts of KeepTrying and BBforyears... I went to the assistant of a Gastro doctor. After all the doctors and dentists I've seen, I had the most wonderful experience there. They were cordial, friendly and really listented to me. First off, its so embarrassing to say I have bad breath and I don't know why. But they saw my turmoil and kinda looked at me like you are just coming to us now? Anyways, she took my hand and said we are going to try and find what is causing you this taste, breath and pain in your life.
I am set to have my endoscopy on Dec. 17th. They put me asleep and the procdure will take 1.5-2 hrs.
I showed her my checklist of things that were ailing you guys from this community I belong to... She was interested and said the doctor would look for all those things (candida, bile, HH, etc.) and she said she'd do the impedance test next if the endoscopy came back normal.
Wish me luck that this will help me discover and treat my root of bb!!!!
(I am reposting on Keeptrying's thread as well)
Everyone keep updating on these topics!

iva · Post by **iva** » Wed Nov 18, 2009 7:57 am

Good luck Mindy,

I truly hope u are lucky enough to find your problem and solve it.
Keep us posted!

KeepTrying09 · Post by **KeepTrying09** » Wed Nov 18, 2009 8:20 am

bbforyears wrote:Good Luck! Hope all goes well for you on Tuesday! I am having another endoscopy on that day and will keep everyone posted....

Hey bbforyears,

If you find anything in your endoscopy that is unusual, could you please post the pictures online like I did for mine? It would be really great if we could get as much photographic evidence as we can to support our claims, so doctors will start taking us seriously!

Thanks a bunch

bbforyears · Post by **bbforyears** » Wed Nov 18, 2009 3:42 pm

Mindy,

Oh, I am so happy that your doctor seems so compassionate and caring! I hope the endoscopy shows something...but if it doesn't the impedance test surely will if this is your problem.

I had my gallbladder removed so my body now constantly releases bile. In persons who still have their gallbladder...bile is normally released only when food is ingested (unless it is malfunctioning--which is a possibility). You will have to fast for your endoscopy so don't be discouraged if they don't see it on your endoscopy, like they did on mine. My liver sprays bile all over the place, whether I eat or not.

The Carafate is weighing it down though-- and keeping it in the small intestine, where it belongs!

Obviously the Carafate is working because I didn't see a trace of bile on this last endoscopy (yesterday)....I've been on Carafate 4 times a day since June. I can't believe the difference in the photos. My first one had yellow stuff (and in some photos--green stuff) all over the place...

I bombed my Gastric Emptying test on Monday. After 90 minutes the liquids passed through my stomach but the solids (radioactive eggs--yuck) did not. I have been having a problem with constipation. I never had this problem before the meds...infact I had to run to the bathroom right after eating before. I told the doctor I think the meds are slowing my digestion down.

I whined to the technician that now the doctor will not probably do the surgery. She told me that she has seen many times where the Nissen actually speeds up digestion, on rare occasions-- too much. She had a Nissen patient who ingested the eggs and water and then 15 minutes later when she went to take the first pictures --- they were gone. She asked him if he threw up and he said no--she was like okay, test over. She said he had to have another surgery...

I have another appointment with the surgeon next Wednesday and he said we would go over the tests then and move on from there.

Again, I am so happy for you!! I really hope you get some answers real soon! It could be a very Merry Christmas for you!

bbforyears · Post by **bbforyears** » Wed Nov 18, 2009 3:52 pm

KeepTrying,

I am somewhat challenged in figuring out how to use my scanner..

I will ask my bf if he can help me scan my photos into my computer so I can upload them to this site. I would really like to show everyone the before and after pictures.

I am somewhat disappointed that my new surgeon only took 6 photos this time...and none of my esophagus. I asked him to take "lots" of pictures before the procedure. He took 3 photos of my GE junction, one of my duodenum, one of my fundus and one of my vocal chords. Still, no bile was evident in any of these photos.

xoxoxoxoxo

mindyb · Post by **mindyb** » Wed Nov 18, 2009 5:23 pm

Thanks bbforyears, that would be great and a special Christmas.
I have been so hopeful on different things over the years, that I'm not getting excited. Its not worth the disappointment.
I'm looking at it as... I can at least check it off my list if all is normal.
But I am human, so I have a glimmer of hope left in me.. Its our nature!
I'm glad you are treating your bile reflux. At least you targeted your problem and can move forward with treating it!!!!
Something inside me tells me if anything it may be candida in there.
I have fuzzy head, really bad memory, fatigue, etc. But I'm also the mom of a toddler!

KeepTrying09 · Post by **KeepTrying09** » Wed Nov 18, 2009 6:34 pm

bbforyears wrote:KeepTrying,

I am somewhat challenged in figuring out how to use my scanner..

I will ask my bf if he can help me scan my photos into my computer so I can upload them to this site. I would really like to show everyone the before and after pictures.

I am somewhat disappointed that my new surgeon only took 6 photos this time...and none of my esophagus. I asked him to take "lots" of pictures before the procedure. He took 3 photos of my GE junction, one of my duodenum, one of my fundus and one of my vocal chords. Still, no bile was evident in any of these photos.

xoxoxoxoxo

Thanks bbforyears. That would be really great if you could get the before and after pics scanned and posted on here. I would really love to see them, and I'm sure there are a lot of other people who would find the visuals very helpful

Regarding uploading them on this site, you can't directly upload them here, you have to upload them to some kind of picture storing site and then just copy the link here to display them. I use http://www.photobucket.com to upload my pics. It's free and really easy to use. I Just copied the link from there over here and voila, you can see my endoscopy pics and all! If you need any help setting it up, let me know

Thanks again!

lilli · Post by **lilli** » Tue Nov 24, 2009 2:34 pm

dear bbforyears thank you very very much for informing us, because i think i finally found the cause of this problem thanks to your comments. i have the same symptoms. white coated tongue, bad taste, fullness in my ear, huge tastebuds behind the tongue, etc. and of course bad breath for years. i never thought it could be the bile but i think i'm sure about it now. let me tell you about some of the problems i've been through. i had deviation in my nose and i had an operation for that. i thought i was gonna be ok but nothing has changed. after a year i had operation on my conchas (in the nose). then i had an endoscopy to see if the problem is about my stomach. the doctor found out that i had hiatal hernia and laryngopharyngeal reflux. but i had no complaints about my stomach. sometimes LPR can have nearly no bad effects on people. i soon realised that some of the food was coming back to my mouth but it didn't bother me. i used PPI for 4 months but nothing has changed with the smell so i gave up. after 2 years i decided that the smell was coming from my stomach and i had nissen operation which didn't help. now there's no coming back of food but the smell is still there. when i read your post i remembered i had blood test several years ago and my bilirubin values were a little bit higher. when i asked the doctor if this was a problem, he said that the values are very close to normal so this was not a problem. now i can relate these to each other. i can't exactly know how bile effects me but i think i have something wrong with the bile and the bilirubin value confirms this.

i will be very happy if you people share your ideas and experiences about this "bile" thing. until yesterday i had no idea what could be the source of this smell but i think i know now...

and a little advice. the subject of this topic is not attracting attention. i was almost about to skip it without reading. i think it can be really helpful to many people because there are many people having the same symptoms and looking for a cure in wrong places -just like me- (look at the operations i had).

i wanna thank you and hope to hear from you as soon as possible.

bbforyears · Post by **bbforyears** » Wed Nov 25, 2009 1:51 am

Dear Lilli,

I know it sounds so strange that one could have bile reflux. I was convinced for years that my bb was from some rare type of bacteria in my mouth. I did have stomach problems after removing the gallbladder but I had the bb for several years prior without stomach problems. Removing the gallbladder just made my bb so much worse....and gave me stomach issues.

I am 100% convinced the bile is what caused the bb for me. This is based on the fact that it got so much worse after removing the gallbladder, the ppi's did nothing for my LPR, I saw bile all over my endoscopy and once Carafate was prescribed I got so much better. Carafate weighs the bile down.

If you think about it -- bile reflux and bb makes sense. Bile is used to break down fats in your small intestine. Your small intestine absorbs the nutrients that the bile breaks down and passes the "waste" to the large intestine. When you are refluxing bile, you are essentially refluxing waste...yuck!

Before the Carafate I also had weird symptoms unrelated to my bad breath (or so I thought). I would lose massive amounts of hair everyday and always felt cold, even in warm weather. I think these were signs that I was malnourished and my body wasn't absorbing the nutrients like it should have. This was probably because the bile wasn't staying where it was supposed to be (in my small intestine). Who knows? But I don't feel cold all the time anymore and I barely lose any hair now either. Weird, huh?

I also have a "moderate" deviated septum and at one time thought that it might have been related but now I don't think it has anything to do with the bb. I have likely had the deviated septum all my life and never had bb until age 25. I don't really have any allergies either...so although I do get frequent sinus infections....I don't think the deviated septum is the root cause. I think the reflux was causing that!

I would recommend that you ask your doctor for Carafate. Try it for a week or so and see if it makes a difference. If it does then you likely have bile reflux, which is a pain in the butt to control but meds like Carafate do help. The only real cure for this type of reflux is a by-pass surgery. The same surgery that obese people get to lose weight. The Nissen does help some people with bile reflux, but not everyone.... Actually, I am seeing a surgeon tomorrow for the Nissen (I also have acid reflux) but I know going into it that it probably won't stop the bile reflux. I am prepared for the fact that I will probably have to do both surgeries.

Please keep us posted on your progress!

bbforyears · Post by **bbforyears** » Sat Nov 28, 2009 3:45 am

Sorethroat,

Just wondering if you've noticed any changes being on the ppi??

focused · Post by **focused** » Mon Mar 05, 2012 5:48 am

I recently had blood test and my bilirubin tests came pretty high. My doctor prescribed a list of other tests including liver tests etc.
Everything else came as normal excep B12 level.
They were very low. He asked me to take 5 injections of B12. After one month of taking it, My bilirubin levels are still the same :-(

Any one else having high bilirubin Levels?? I am confused :-(

Archimonde · Post by **Archimonde** » Mon Mar 05, 2012 6:56 pm

focused wrote:I recently had blood test and my bilirubin tests came pretty high.

What does that entail ?

Thanks for bumping this old thread, i had forgotten about it.