to eat! It really, really burns when I swallow. I can feel it all the way down and it's agonizing. My PCP isn't interested.
I saw her today because of having attacks of dizziness and breathlessness. This started about a month ago, and is connected to exertion. I bend down and it happens. I go up one flight of stairs and it happens. Don't know what it is, but it has no connection to the pain when I eat.
I tried to tell her today, but she wouldn't listen. This is for the GI and not for her. He says it's a sensitive esophagus. What do I do about it? How do I deal with it? I won't take PPIs. Pepcid isn't helping at all. Nothing is. The only reason I get up the courage to eat is because I know, paradoxically, that once there is food in my belly the burning decreases. For a while.
I truly don't know what to do, and would appreciate any advice I can get.
Hurts!
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Lesley, are you able to eat honey? Honey might be able to sooth your throat. The reason I ask is because there is a certain kind of honey, active manuka honey, which has been claimed to help several GI problems. Here is a website that explains it http://www.manukaonline.com/ Maybe Tex has heard about it and could chime in? I know that manuka honey can be bought at Whole Foods. So sorry to hear about the pain you are having.
Mandy
Mandy
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harvest_table
- Rockhopper Penguin
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Lesley,
Have you researched Barrett's esophagus ? I believe Shirley was DX with that years ago. I'm my humble opinion, histamines often play a role in that DX, although not often recognized.
Hope you feel better soon.
Love,
Joanna
Have you researched Barrett's esophagus ? I believe Shirley was DX with that years ago. I'm my humble opinion, histamines often play a role in that DX, although not often recognized.
Hope you feel better soon.
Love,
Joanna
THE GLUTEN FILES
http://jccglutenfree.googlepages.com/
http://jccglutenfree.googlepages.com/
Mandy,
I have manuka honey and have used it for years for a multitude of problems. I have even used it (diluted) as a moisturizer. It works VERY well, even though it's a little sticky.
This is not my throat. It is my espohagus, and yes, I have tried the honey. It doesn't help.
Thanks Martha. I will read about Abigail.
Joanna, 2 years ago I had laparoscopic fundoplication for the GERD because I already had striations of the esophagus, but it clearly hasn't lasted, and, IMO has deteriorated, possibly into Barrett's. My new GI said that the last PH test (horrible test) prior to the surgery, showed very little abnormality, so he concludes that my esophagus is uber sensitive which is causing the pain.
It's 2 years ago, dammit! Couldn't something else be wrong? I have gastroparesis and MC. Surely it should at least be checked?
I am tired of being treated as if I AM a hypochondriac and a moaner even though the problem has been diagnosed.
Today my PCP told me that she thinks all this will go away, because there are often cases of all different types of colitis that clear up for no apparent reason. So there is a reason not to take me seriously. Everything will clear up and go away. When? If I go to get psychotherapy maybe? If it's all in my head?
She also told me that MOST people, when they are told that this is not going to kill them, manage to deal with it. I wanted to HIT her, and I am not a violent person.
I have manuka honey and have used it for years for a multitude of problems. I have even used it (diluted) as a moisturizer. It works VERY well, even though it's a little sticky.
This is not my throat. It is my espohagus, and yes, I have tried the honey. It doesn't help.
Thanks Martha. I will read about Abigail.
Joanna, 2 years ago I had laparoscopic fundoplication for the GERD because I already had striations of the esophagus, but it clearly hasn't lasted, and, IMO has deteriorated, possibly into Barrett's. My new GI said that the last PH test (horrible test) prior to the surgery, showed very little abnormality, so he concludes that my esophagus is uber sensitive which is causing the pain.
It's 2 years ago, dammit! Couldn't something else be wrong? I have gastroparesis and MC. Surely it should at least be checked?
I am tired of being treated as if I AM a hypochondriac and a moaner even though the problem has been diagnosed.
Today my PCP told me that she thinks all this will go away, because there are often cases of all different types of colitis that clear up for no apparent reason. So there is a reason not to take me seriously. Everything will clear up and go away. When? If I go to get psychotherapy maybe? If it's all in my head?
She also told me that MOST people, when they are told that this is not going to kill them, manage to deal with it. I wanted to HIT her, and I am not a violent person.
Yes, by this time Lesley may well have developed Barrett's esophagus, but that knowledge is not much help, (even if she has developed BE), because the treatment for BE is to reduce or eliminate the GERD, and that's easier said than done, obviously.
I'm afraid I'm not familiar with manuka honey.
A common prophylactic for eating hot chili peppers is to eat something that contains a lot of fat, first, to coat the mouth and throat, before taking a bite of the chili. Of course, that has to be repeated regularly, to maintain a coating, but it might help, in this case, (if you can tolerate a significant amount of fat, because it will take a fair amount to also coat the esophagus).
Lesley - wow! Your doctor really needs to read my book - I've got to get that thing finished.
Tex
I'm afraid I'm not familiar with manuka honey.
A common prophylactic for eating hot chili peppers is to eat something that contains a lot of fat, first, to coat the mouth and throat, before taking a bite of the chili. Of course, that has to be repeated regularly, to maintain a coating, but it might help, in this case, (if you can tolerate a significant amount of fat, because it will take a fair amount to also coat the esophagus).
Lesley - wow! Your doctor really needs to read my book - I've got to get that thing finished.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Hi Lesley,
Sorry for your negative experience with the PCP.
To elaborate on Tex's fat comment I am presently eating coconut oil off of the teaspoon specifically for brain fog and it seems to be helping my brain fog. I can't specifically comment on your application but can tell you I'm eating 3 teaspoons of coconut oil a day licking it off of the spoon. I've had no side effects. For your application I think you would probably need a lot more of some type of fat than what I'm presently taking.
Brandy
Sorry for your negative experience with the PCP.
To elaborate on Tex's fat comment I am presently eating coconut oil off of the teaspoon specifically for brain fog and it seems to be helping my brain fog. I can't specifically comment on your application but can tell you I'm eating 3 teaspoons of coconut oil a day licking it off of the spoon. I've had no side effects. For your application I think you would probably need a lot more of some type of fat than what I'm presently taking.
Brandy
Holy Cow, Lesley. We must have the same PCP even though you live in California and I live in Kansas! My PCP also told me that this will go away on it's own, that it was no big deal. In fact she said I really wasn't sick enough to see the GI Dr.... I should see his ARNP instead (and I did and she is awesome). As weight started falling off of me, even though all I was doing was laying around, too dizzy to function and I had to have someone else drive me to her appts, she said " oh you've lost 8 pounds. Well that's a happy consequence of all this isn't it?". I really wanted to smack her, but words work so much better. First I made sure she heard me say that I am losing weight by laying around. I drew her a picture by saying "I want you to remember the last stomach and intestinal virus you had. Remember it? That's how I feel EVERY DAY". I told her that I was in an interagency meeting trying to describe a child's psychiatric problems, and the room was spinning, and that I was no longer capable of working a full day. I pressed her so much by asking repeatedly 'what is our the plan' that her hands flew up and she said, 'we'll refer you to the gastroenterologists in Salina'. That's what I wanted to hear. She did finally say 'I need their guidance in getting you through this". NO DOUBT ABOUT THAT--- cuz we were going nowhere fast and I was getting tired of having my feelings trivialized. Next time I get sick I'm going straight to a specialist.
We have to advocate for ourselves because no one else will. Don't give up and accept mediocre (or worse) treatment.
Carol
We have to advocate for ourselves because no one else will. Don't give up and accept mediocre (or worse) treatment.
Carol
“.... people will forget what you said, people will forget what you did, but people will never forget how you made them feel.” Maya Angelou
Tex,
I cannot understand why anyone would eat a pepper so hot you have to coat your insides with fat before you do so. That is just plain weird!
There are other treatments for Barret's esophagus, but the complications are more than I want to deal with.
I will happily gift her with a copy of your book, Tex. Given her reaction I doubt she will read it.
Brandy - I will try your remedy, and maybe I will mix the coconut oil with manuka honey. Maybe that will help. Anything to make this better.
Carol - I hear you loud and clear. Maybe if I go to an NP I will get better treatment.
Oh, and I got test results back. My sodium is in the NORMAL range for the first time in years. She went on at me for "drinking too much water and diluting the sodium out of my system". I DON'T! I cannot get through to her that I have dry mouth, so I sip water. I consciously keep my water consumption down. I do carry a bottle of water with me, but I don't overdo it.
And my sodium proves it, dammit!
But my Cl is low. I wonder if this might be contributing to my dizziness and light headed feeling on exertion?
I am NOT a hypochondriac, and I am beginning to resent being related to as one. I wouldn't wish this on anyone, but I wish she would get a REALLY bad stomach virus and see how it feels. Then I could compare it for her.
[/u]
I cannot understand why anyone would eat a pepper so hot you have to coat your insides with fat before you do so. That is just plain weird!
There are other treatments for Barret's esophagus, but the complications are more than I want to deal with.
I will happily gift her with a copy of your book, Tex. Given her reaction I doubt she will read it.
Brandy - I will try your remedy, and maybe I will mix the coconut oil with manuka honey. Maybe that will help. Anything to make this better.
Carol - I hear you loud and clear. Maybe if I go to an NP I will get better treatment.
Oh, and I got test results back. My sodium is in the NORMAL range for the first time in years. She went on at me for "drinking too much water and diluting the sodium out of my system". I DON'T! I cannot get through to her that I have dry mouth, so I sip water. I consciously keep my water consumption down. I do carry a bottle of water with me, but I don't overdo it.
And my sodium proves it, dammit!
But my Cl is low. I wonder if this might be contributing to my dizziness and light headed feeling on exertion?
I am NOT a hypochondriac, and I am beginning to resent being related to as one. I wouldn't wish this on anyone, but I wish she would get a REALLY bad stomach virus and see how it feels. Then I could compare it for her.
[/u]
How about instead of water and candy trying some saliva drops or a saliva stimulant? Seems like it would be a good idea to alternate between a saliva replacement and a stimulant.
http://www.oralcancerfoundation.org/den ... stomia.htm
http://www.naturalypure.com/DryMouthResearchReport.htm
http://www.naturalypure.com/DryMouthRelief.htm
http://www.oralcancerfoundation.org/den ... stomia.htm
http://www.naturalypure.com/DryMouthResearchReport.htm
http://www.naturalypure.com/DryMouthRelief.htm
Well, they're not always that hot, but when they're running a little on the fiery side, the extra fat helps to prevent damage. Chilies are certainly not without merit. They help to open your sinuses, and by doing so, they help to enhance your sense of smell and taste, thereby making virtually any food taste better. Chilies are a little like MSG, without the migraines and other neurological side effects, (of course, they do have the possible physical side effect of burning delicate tissues, but one learns not to allow that to happen).Lesley wrote:I cannot understand why anyone would eat a pepper so hot you have to coat your insides with fat before you do so. That is just plain weird!
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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humbird753
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Hi Lesley,
I am sorry you have been feeling so badly lately, and I am sorry I don't have any helpful advice on your current symptoms.
But I can understand the frustration you are going through with your doctor. I never "needed" a doctor before my LC, and have lost a lot of confidence in them since my diagnosis. I know I'll be "needing" them again at times, and am not looking forward to it. Doctors do have their place, and yet I am learning there is a lot they don't know. When it doesn't fit into their area of scientifically proven knowledge, they treat the patient like they are a hypochondriac. You would think they would look at it as an opportunity to learn. After all, how have other diseases and treatments been "discovered"?
Please know you are heard and cared for here.
Paula
I am sorry you have been feeling so badly lately, and I am sorry I don't have any helpful advice on your current symptoms.
But I can understand the frustration you are going through with your doctor. I never "needed" a doctor before my LC, and have lost a lot of confidence in them since my diagnosis. I know I'll be "needing" them again at times, and am not looking forward to it. Doctors do have their place, and yet I am learning there is a lot they don't know. When it doesn't fit into their area of scientifically proven knowledge, they treat the patient like they are a hypochondriac. You would think they would look at it as an opportunity to learn. After all, how have other diseases and treatments been "discovered"?
Please know you are heard and cared for here.
Paula
Paula
"You'll never know how strong you are until being strong is the only choice you have."
"Life is not about waiting for the storm to pass... It's learning to dance in the rain."
"You'll never know how strong you are until being strong is the only choice you have."
"Life is not about waiting for the storm to pass... It's learning to dance in the rain."
Gabby - I have tried the salivary stimulants. They don't work enough for me. The GERD comes up and I have to do something FAST to stop the burning before it becomes unbearable. That's where I have to suck on candy. Better than water because that lasts a second. The candy lasts much longer.
Thanks Paula and Gloria. I truly appreciate it.
Tex, I will have to take your word for it. I haven't been able to eat spicy for years.
I do think it's unfair. So many foods are forbidden for me. And the others hurt to eat. For a girl with a life long addiction to food that is playing DIRTY!
Thanks Paula and Gloria. I truly appreciate it.
Tex, I will have to take your word for it. I haven't been able to eat spicy for years.
I do think it's unfair. So many foods are forbidden for me. And the others hurt to eat. For a girl with a life long addiction to food that is playing DIRTY!