Anyone with esophilic esophagitis? - Acid Reflux / GERD Message Board

Hamilton92 · 09-01-2008, 12:58 PM

Anyone have this horrible, life altering disease I want to hear from you. Please share your stories here with me. I need to know I am not the only one suffering.
I am a 34 year old female diagnosed one year ago.
Can you live a full life with EE? Is this a death sentence? I am so scared and at my wits end!
I have been unable to eat solids for about 4 years, mainly living on creamy foods, soups, sometimes crackers when I am able to tolerate swallowing them.
I finally found a gastroenterologist who genuinely cares and he did an endoscopy and found I had EE. Will I ever be able to eat normally again?
I have no insurance and can't go back to see him right now. I went on almost 5 years suffering before he finally diagnosed me. He gave me a Flovent inhaler that I have used up long ago and can't afford to go see him to get another one.
I also get this horrible bloating, raw feeling in my stomach and right around my belly button area as if my insides are just raw and inflamed, I have a constant burning, gnawing feeling in my stomach constantly too. When my stomach feels raw inside like it does today I can't eat or drink anything that doesn't make it feel worse. It seems like it gets worse right before and lasts to a few days after my menstrual cycle.
What can I eat to supplement my diet to make sure I'm getting all of the vitamins I need. I eat a lot of dairy, yogurt, cottage cheese, creamy soups like Tomato mostly, sometimes crackers but they get stuck so usually not, ice cream, cream of wheat...anything soft and will go down easily.

Elisa123 · 09-02-2008, 03:55 PM

Quote:

Originally Posted by Hamilton92

Anyone have this horrible, life altering disease I want to hear from you. Please share your stories here with me. I need to know I am not the only one suffering.
I am a 34 year old female diagnosed one year ago.
Can you live a full life with EE? Is this a death sentence? I am so scared and at my wits end!
I have been unable to eat solids for about 4 years, mainly living on creamy foods, soups, sometimes crackers when I am able to tolerate swallowing them.
I finally found a gastroenterologist who genuinely cares and he did an endoscopy and found I had EE. Will I ever be able to eat normally again?
I have no insurance and can't go back to see him right now. I went on almost 5 years suffering before he finally diagnosed me. He gave me a Flovent inhaler that I have used up long ago and can't afford to go see him to get another one.
I also get this horrible bloating, raw feeling in my stomach and right around my belly button area as if my insides are just raw and inflamed, I have a constant burning, gnawing feeling in my stomach constantly too. When my stomach feels raw inside like it does today I can't eat or drink anything that doesn't make it feel worse. It seems like it gets worse right before and lasts to a few days after my menstrual cycle.
What can I eat to supplement my diet to make sure I'm getting all of the vitamins I need. I eat a lot of dairy, yogurt, cottage cheese, creamy soups like Tomato mostly, sometimes crackers but they get stuck so usually not, ice cream, cream of wheat...anything soft and will go down easily.

Elisa123 · 09-02-2008, 03:58 PM

Hey there, I too have eosinophilic esophagitis. I also have horrible horrible reflux as well. Ive had this for about 3 years now and it is pure hell and a half. I can't eat anything solid as my throat is so burned I cant get anything down it hurts like torture. I fear for my future and scared as well as i know there is no cure for this. I have not had any sort of life in about 3 years because of this illness I have. So yes you are not alone, know that i do understand and i hope you feel better soon

-Lisa

mnwinter · 12-20-2008, 10:41 AM

I also have Esophilic Esophagitis. I am 25 years old, I think I've had it for 10 years now. I can't swallow much unless I water it down with gravy or broth or if I take small bites. I thought it was normal until one day some bread stuck in my throat. I figured if I went to bed and woke up it would be gone. It wasn't. That was 3 years ago and now they named it. I went to an allergist and he too, couldn't tell me anything useful, I've tried everything. It has to be something with food allergys. It sucks! I'm allergic to all fruits except berries, most sauces, all nuts, etc. Alot of things I can swallow I'm allergic and the foods I can have won't go down, it's great

I feel better knowing I'm not the only person.

TEdds83 · 12-25-2008, 02:15 PM

Wow! I have never heard of this one before. Sorry to hear you all are suffering with this. Today I feel like I have that. My acid reflux is out of control. I could barely eat anything at Christmas dinner. My throat is swollen with lots of mucus. My voice is husky from clearing it all the time. I have to watch everything that goes into my mouth. I have tons of allergies to medicines, foods and invironmently. It stinks. I have alot of fear in my life because of this. It causes me stress and the cycle continues. I am 30 pounds overweight so by changing my diet I intend to get it off.

Is there a cure for EE? I sure hope so. What are all the symptoms and how do you get tested for it?