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Venting: non GERD sufferers getting on my nerves

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Posted 5/11/2012 7:36 PM (GMT 0)
I nearly cry when someone puts out a plate of brownies, or cookies and I must run the other way. Or the fact that once beloved red wine has now become toxic to me. It kills me to look at bottles of wine simply gathering dust.

Curse you weak LES.
Posted 5/11/2012 7:58 PM (GMT 0)
you certainly are not the only one. That is the reason i joined this forum is I was just feeling so alone. To everyone I look "normal" but I dont feel that way. And people do not take reflux seriously, because most people have experienced it mildly and on occasion. They have no idea how bad it can get.
Posted 5/11/2012 8:12 PM (GMT 0)
I can't even describe it as 'acid reflux' because they think Tums will stop it, not that my throat often feels like i've got a wasp nest in there.
Posted 5/11/2012 9:39 PM (GMT 0)
I usually say I have gastritis rather than acid reflux (I have both) as it doesn't get the typical Rennies recommendations!

I have been wheat and dairy free for 27 years - that's no fun socially sometimes but I've always coped and learnt to deflect conversation. Alcohol I side step by saying I'm driving. For me the biggest killer is the coffee - it's everywhere, in every friend or relative's house, after every church service the minister says "stay and enjoy a drink together", the hospital department I work in runs on tea and coffee and I sometimes have to serve it to the patients!! I have coffee envy every day.

As for brownies or cookies I've always had to bring my own anyway! I don't find people notice what you eat or don't eat, but they do notice if you have no cup or glass in your hand. I quite often drink hot water and find if I have a cup of hot water people tend not to notice I don't actually have tea or coffee! However, I tend to feel like I'm having pretend tea like I did with my doll's tea set many many years ago!!

MMM
Posted 5/13/2012 10:31 PM (GMT 0)
bump
Posted 5/14/2012 6:01 AM (GMT 0)
I know how you feel. Not only do i have GERD issues, but i have esophageal motility issues in which i can not even swallow any solid foods! Ive been living on a liquid diet for 7 months. So not only do i have to avoid acidic food, but i can only have liquids from a blender on ensures. People still do not sympathize with my situation, so i can definitely relate. Tell those people that nag you that you can at least still eat food with them, i havent had a family meal in more than half a year and missed out on these past holiday meals.
Posted 5/14/2012 7:07 PM (GMT 0)
Jennuine, I am so sorry you are dealing with additional issues ontop of the GERD. GERD is bad enough. Digestive issues in general seem to be really hard for people to cope with.
Posted 5/23/2012 10:08 PM (GMT 0)
I just heard the 800th suggestion that I try Alka-Seltzer for GERD relief. Thanks a heap, guy. Alka-Seltzer didn't work a year ago. I guess I should take it easy on non-sufferers but I've realized recently that I would never - besides here, I guess I must mean in my "previous life" - tell someone what I think is best for them to take for a medical condition. Like if someone told me they had multiple sclerosis, I would NEVER pipe up with, "Hey, I hear baby aspirin mixed with fabric softener will knock that right out."
Posted 5/24/2012 3:18 AM (GMT 0)
I read each one of these posts and I can certainly agree with every one of them.

I have been down that road for over 5 yrs. All the family get togethers pot lucks, dinners out that I could hardly eat anyting. I also have taken my own food from time to time when I didn't think there would be anything I could eat. I basically ate very little. Over this 5 year period I lost 45 lbs. Only drink was water gave up all the rest.

I have been on just about every prescription there is for GERD. In the end I was on protonics 40 mg. twice a day and taking Carafate 3 times daily. Each time after about 2 weeks to a month the medication would quit working for me. I didn't have to lay down to get acid. I got it sitting up standing whatever. I had never found anyone that I could talk to that had it like I was having it. It wasn't until after I had the Nissen surgery this past March that I met a lady in the surgeons office that told me about this forum group. I always wanted someone I could relate to and now here I have found this wonderful group that relates and understnds to what the other one is going through. I used to get GERD so bad at night I would get some crushed ice and let it drizzle down my throat for relief. It did help. I have found since being on this sight that others have done the very same thing. I use a wedge and 3 pillows and still would get it. All I can say is it is pure Hell! I was worried that I would lose my voice box from the acid burns.

I had surgery in March. I am looking forward to the day I am healed and well once again. I used to weigh 165 and now I am down to 113. Pretty sad. Pretty soon I will not want to go to town as people will be shocked to see the way I look.

Anyway, I just stopped by to let you know I can relate to each one of you. We are all on the same boat. Thanks for letting me vent along with the rest.

halo

Posted 11/6/2012 4:00 PM (GMT 0)
bump
Posted 11/6/2012 5:07 PM (GMT 0)
Thanks for this Erica! Everyone else echoing the exact same way I'm feeling! Wow! Just reading through this I'm agreeing with everything!

I have resorted to telling restaurants I'm allergic to certain things. I feel bad for lying but technically if it's going to send me to the hospital in fits of 'heart attack' feeling acid reflux, isn't that the same as an allergy?

At work they are always ordering food for us and it's ALWAYS pizza. I just make sure when people tell me "oh pizza is here!" I say "thanks for letting me know" and leave to get my own food. Same with all the Halloween candy.

I have people offering me their foods that I can't eat and then giving me a heap of drama because I refuse to eat it. Them saying "Oh, you're so skinny, you need to eat this - are you THAT worried to stay skinny?!" It's like, what the heck?! I CAN NOT PHYSICALLY EAT THAT! I've had people say "Omg you are so thin - how do you stay so skinny? I wish I could do that". I now just say "Hey get yourself some severe acid reflux, eroded esophagus and a hernia and you could be the same way too!" That starts to shut them up quickly.

It's obvious I'm angry about it :/
Posted 11/6/2012 10:15 PM (GMT 0)
Thanks for bumping this thread Erica! I agree with all these comments. I always wanted to post/vent something like this but didn't want to seem like a cry baby (even though I am) It's so hard to have this disease, do people really think we don't want to eat whatever we want... If I had a dollar for every time someone says "how do you stay so skinny" I would be rich I was skinny before but I've lost 10lbs in 2mo that's what worries me the most I'm 5 foot 110lbs now and I don't want to lose aymore weight but its hard not to when I can't eat much and get bored with eating these foods. I cry all the time and tell my husband i just want to eat normal I can do without the soda and candy but the food I really miss :(
Posted 11/7/2012 1:38 AM (GMT 0)
There are so many foods I miss too! I totally understand. Buffalo wings and anything spicy are my favorites, I can't TOUCH that... can't even look at it! I used to love to cook and bake but anymore it's such a challenge :( I relate to the weight issue. I have had a few people say "wow you look really good" while others are "why are you so skinny? you don't look healthy". It amazes me at how people are! I'm 5'11" and down to 123!!! I'm struggling to keep any weight on. I have been eating protein bars when I can and that seems to help. I've try wearing baggier clothes sometimes just so people won't comment :( I even thought about joining a gym to gain muscle but then the thought of working out sounds exhausting!!!

okay. i need to stop venting :(
Posted 11/7/2012 1:49 AM (GMT 0)
when someone gives you a hard time about gerd or any other medical condition, tell them you have your medical condition and they have their ugly condition. tell them medical conditions are treatable, but nothing can be done about being ugly.
Posted 11/7/2012 2:28 AM (GMT 0)
Maybe I should try protein bars too! It's ok keep venting I know your frustration I have the same issues with doctors too I'm on my 2nd gi Dr and about to find a 3rd. I don't know why I guess in hopes that somebody will listen and help I guess....

greatunclebill, you are so funny! Maybe I will try that it will definitely shut them up lol
Posted 11/7/2012 7:35 PM (GMT 0)
greatunclebill: LOL

You will be able to find substitutes for the foods you miss (some of them). Non dairy ice cream is actually really good and it is 3g fat per serving (low fat and non dairy). I also eat gluten free marshmellow bars which are low fat and dairy free and there are many baking recipes that are low fat, non dairy. My husband made me gluten free, non dairy low fat cupcakes and they are delicious. He also made me frozen bananas with honey and almond milk and froze it so it was healthy ice cream. My mom made her banana bread using brown rice flour, extra virgin olive oil, bananas and dairy free vailla low fat free icing. It was awesome.  I make my own healthy fries by cutting up red potatoes, adding olive oil and salt and baking them in the oven until they brown. Everyone loves them. For pizza I use gluten free english muffins with olive oil and fat free cheese. Not exactly the same but it is something. My husband also made chicken with gluten free bread crumbs which were like chicken fingers.I am able to have cocnut rum in water as an alcoholic drink occasionally as well. The trick is to get creative. Some things you will have to learn to live without. I am still missing beer, wings, mozzarella sticks, pizza, cheesesteaks (I am from Philly-I may attempt to make my own using 97% fat free chicken on gluten free bread at some point) as well as healthy foods like strawberries and blueberries which are acidic. I am still adjusting to it all and when I am out at social events, I get upset because I can't eat anything offered. It stinks but what choice do I have?
Posted 11/7/2012 7:38 PM (GMT 0)
I also lost a lot of weight. I am 5'0 and 108 pounds. People say I look great, which is a compliment and also an annoyance because I would rather be bigger than have this condition. But I know people are just trying to make the situation less negative.
Posted 11/26/2012 4:19 PM (GMT 0)
Okay I'm back to vent lol Thanksgiving and lots of people doesn't really help.

I had a few comments because I wouldn't eat desserts. "Oh, you are thin enough, you should eat it". Then I have to say "It's not because of that, I have horrible heartburn and can't have chocolates". They just look at you with a judgemental look of "sure" :/

I'm so ready for surgery!
Posted 11/26/2012 5:08 PM (GMT 0)
I've cut down going out a lot because I sure enjoy a pint and I know its not good for me. My friends now think I've become asocial. I shrug my shoulders and say that some day I will get better and then you won't recognise me. Touchwod.

Family settings I just stuff myself and take the reflux pain because quite frankly every food causes reflux anyway and I don't want a bandwagon on my backside.
Posted 11/26/2012 5:24 PM (GMT 0)
I'm literally terrified of foods because the reflux gets so horrific that I feel like I'm having a heart attack. Maybe that's why I get so angry when people give me grief? Because it's hell for me to have to pay, not them :/ I'm just very bitter about it anymore!
Posted 11/26/2012 5:54 PM (GMT 0)
Hi NDL, your time will come. Everything will look rosy and you will look back and feel what all the fuss was about. You are very lucky to have the Knox center near you. The surgeon there was mentioned by Torax as having done the most LINX surgeries along with the one at UCSD. So, be hopeful and patient for just a little longer :-)
Posted 11/26/2012 7:30 PM (GMT 0)
I know how you all feel. I have gotten used to people not really understanding.  Frankly, I do not care. I have to do for me what is best for me and it is no one else's business. I bring my own foods and have found some equivilents for things I can't eat. At the end of the day, it is not anyone else's place to comment on what you eat. There are alot of people with food allergies and digestive disorders. IN the end, I am probablty healthier than I have ever been. My dad has found a way to make me gluten free, low fat cookies that do not bother me. I have found other things to eat that I like. It took me a while but I have come to accept it. I spend more money on food, have to plan my meals and take my own food places.  It is hard when the food is right infront of me but now I associate all those things with pain. It is not worth it.
Posted 11/26/2012 9:10 PM (GMT 0)
I just wanted to ask if any of you have been tested for hpylori? I have had all the symptoms you guys have and have recently found out that it all has to do with my hpylori. I have now started a natural treatment and have not had any issues and have only been in it for 4days one of the meds is a fatty acid from coconut oil and you would think adding more acid like I thought would make it worse but to my surprise it hasn't at all..... Please get tested for hpylori you never know it can be the cause of all the issues you have
Posted 11/26/2012 9:27 PM (GMT 0)

gerd_hater said...
Hi NDL, your time will come. Everything will look rosy and you will look back and feel what all the fuss was about. You are very lucky to have the Knox center near you. The surgeon there was mentioned by Torax as having done the most LINX surgeries along with the one at UCSD. So, be hopeful and patient for just a little longer :-)

He did say that when I was asking him his experience but I didn't know for sure, you never know if people are just bragging LOL So hearing this from out and that you heard it from Torax makes me feel so much :) Thank you!!



I have been tested for H. ployri and it came back negative back in 2007 and 2012. :/
Posted 11/26/2012 10:34 PM (GMT 0)
Thanks for this post. I was just feeling sorry for myself last night as my husband and I went to the grocery store and he put a bag of potato chips in the shopping cart, knowing full well I can no longer eat those, among many other things. It's depressing and I find myself wanting to cry too! Unless you're going through it, you have no idea what it's like. Plus, the conflicting advice on the web of what to eat and what not to eat. Bananas is high on the list of "good" foods yet it gives me heartburn! Heck, water gives me heartburn! I want to run away from myself!
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