Is anyone familiar with eosinophilic esophagitis? I have severe reflux and a hiatal hernia--I refuse to take the PPi's--I worry that I won't digest my foods properly or that my medications won't work. My surgeon suggested a fundo years ago--wish I had done it. I have trouble swallowing food---sometimes it gets stuck, which is very painful. I have had my esophagus dilated 3 times and I need it again. the last scope and dilation showed a lot of eosinophils. I get hoarse an awful lot and I find that sometimes my chest feels tight when I breath. I am seeing a GI next week for the first time.
I'm sorry you have this condition, a good friend has it. I experienced some of the symptoms prior to having the Fundo procedure. Is it too late to have the surgery?
Whether to take medication or not to take medications is very personal, but I'd suggest you try a PPI for a trial period. You don't have anything to lose by giving them a try. You must take them exactly as prescribed, which is usually about 1/2 to 1 hour before a meal or they are useless, and it is best not to eat anything about three hours before going to bed.
I'm someone who has taken some really invasive medications to save my life due to heart issues, and I can tell you PPI's help a great deal, and the side effects are almost nil. I'd encourage you to keep an open mind when you see the GI doctor and leave behind old thoughts possibly stirred up by internet searches. If you take old opinions to a new doctor, it's possible you are wasting your time and money.
Do keep us informed, you have a difficult condition. I also talk like Kim Carnes sings from acid damage to my vocal chords.
Thank u so much for sharing so much info with the forum already...it is nice to have others willing to offer insight and share their experiences with others, that is what makes this forum work : )
I have to agree with Flycaster as he has more experience with the FUNDO as I have not had one, but I do have a hiatial hernia...I do take the meds and with the meds and modifying diet and lifestyle it is possible to only take the meds when needed and not all the time...but it is best to be under the care of a GI dr and not to just stop taking these meds as it can cause rebound effect....and yes, u will need to take supplements as they can deplete magnesium and other minerals and vitamins...so always go to ur Dr and continue to be monitored when on ne med.
I have had reflux for almost 22 years--i think I developed my hiatal hernia when I carried my identical twin girls. i have taken several different PPI's over the years--and i have several other conditions I take medication for---and i did run in to a problem once where a medication and PPIs would not work together.
I am very familiar with fundo surgery, my youngest daughter had to had a fundo just before she turned 10 months old--and we had a very positive experience with it. She is 9 years old now.
I would like to go ahead and have the surgery. When I have had my scopes, twice i had shotzky's rings, and the las time it just needed to be dilated. Once, they told me I had celiac disease--but because i have 3 children with celiac disease i have educated myself about it. i remember reading the report and the terminology all seemed wrong--i compared it to my girls celiac tests, did a little research, and discovered that what they were seeing could be caused by taking a lot of NSAIDS---which I had been taking for arthritis. I had a Ttg test run and i was clear for celiac.
I hate it when i know more than my doctors about certain things. when i was reading the report from my last scope and saw "eosinophils", I mentioned that they were allergic cells--the surgeon told me that I probably knew more about that than he did---i'm sure I did---especially since he didn't even bother to read the entire report and the recommendations saying that EE could not be entirely ruled out and that I should probably follow up with a GI and possibly another scope.
I talked to our allergist and told him how many eosinophils i had---and he knew exactly what I was talking about. i understand it is quite often caused by food allergies---but that it can also be caused by environmental allergies.
WE had a really good ped GI for my girls--one of the smartest doctors I have ever met. he told me that having EE is one of the contraindications to doing a fundo because it will still bother you even with the surgery.
But, I have severe reflux esophagitis---I can't even bend over far enough to make my bed sometimes whithout stuff coming up.
I had a scope in 2006 that mentioned EEs--but not ain any excessive amount--the second scope did not mention any, the last scope mentioned alot.
I have had trouble with food getting stuck in my throat for a long time---very painful---I think it was originally caused by the reflux. They tell me there is a steroid slurry i can drink to treat EE---but I am already taking oral steroids for adrenal insufficiency--they told me that very little of the slurry is absorbed systemically.
I kind of feel like I would like to go ahead and have the surgery done, even if i have EE. If the steroid slurry helps it, then it should not be a problem to have the surgery---plus, it sounds like the EE is going to bother me whether or not i have the surgery---so i might as well stop the damage that is being done by the reflux. I'd rather deal with only one problem instead of two.
I have never forgotten what the ped surgeon told me when my daughter had to have surgery at such a young age. he told me that he did not think it was a good idea to alter the natural PH of the stomach for a long time---makes sense to me. I am going to have severe reflux and have to take medication for the rest of my life if I do not have the surgery--and since I avoid the meds unless I am having alot of chest pain, i am leaving myself open to a bigger chance of getting cancer.
As it is, I have to sleep in the recliner about half the time, even though we have raised the head of our bed.
I am being treated by a doctor for low thyroid low cortisol and other endocrine issues--he does not feel like it is good to be on PPIs if they can be avoided. I am deficient in a number of vitamins and minerals and I am supplementing them to get them to optimal levels---I don't need to reduce my stomach acid and then not be able to absorb my supplements.
I have my appointment with the GI next Wed. I am sure i will have to be scoped at both ends.
Just thought i would add that when i have taken the PPIs, it has usually stopped the pain--but it does not stop whatever is in my stomach from coming up---which can be an uncomfortable sensation, even without pain.
I can also tell you that it is not very romantic to try to spend some "special" time with my husband---and then have to stop and sit up so that i can burp!!!!
I can relate to some of the things u talked about...and it is very frustrating to know more about our conditions then the Dr, but it is one way to not get the wrong treatment,....Drs r only practicing....one day they may get it right...lol...J/K....there are some good ones, and that is why we need to know about our health so we will know when we have the right Dr.....
Hang in there I am sure, with ur knowledge and ur persistence u will find the dr to help u with this <3
Had my scope today---the eosinophilic esophagitis has caused enough changes that it was obvious--I also had a shatzky's ring---this is the third one I've had. I have had to be dilated 4 times in 6 years. The GI di take biopsies to confirm what he saw.
I am so sorry that you are suffering so much! I find that Dicyclomine helps a lot with esophageal spasms, and even though you do not say that is your condition, I wonder if it would help you. It relaxes the esophagus enough that one can eat comfortably. Our neighbor has EE and after the fundiplication, says she doesn't have that problem anymore.
Hang in there and wait for results...not much else u can do but deal with what ever they tell u....I know it is not what u want...or would ever wish for, but we have to face it or get worse which is not really a good choice.
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