A little long, please read.

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stacey77
Regular Member


Date Joined Dec 2012
Total Posts : 109
   Posted 12/29/2012 10:36 PM (GMT -6)   
Hi. I've been blowing up this forum with all of my problems, but i have no one to talk to here. I'm just soo depressed. I try to stay positive and then the depression finds a tiny part of my brain and it overpowers my positivity. I cant get the word "LPR" out of my head. I also have ocd so i'm obviously obsessing over it. I'm starting to feel like "im losing it"
 
I am doing the induction phase of the dr kaufman Dropping acid diet. Tomorrow will be my fourth day. Tonight I had broccoli with a little bit of olive oil and tallapia with olive oil, salt and orageno. It actually was pretty good. That was around 7 and its after 10 now. Right now I Feel so naseaus. My throat is burning...I usually feel worse at night.
 
Has anyone tried the kaufman diet?? I want to know if anyone with LPR/GERD cured it with the Kaufman diet or taking meds without surgery(even though I want surgery). I'm very curious about others stories...i think it will help me cope better. I've heard horror stories of people living with this for years and years.
 
I just want to go into my kitchen right now, grab a bowl and eat icecream. Has anyone who struggled with this able to eat some of their favorite foods again??? With or without surgery...I just need to know this wont last forever. I just want to be healthy for my baby girl. I want to be able to take care of her on my own again, but i'm to sick all of the time to take care of myself. I"m struggling and i feel so alone.
 
I miss good food...but most of all i miss feeling healthy...looking back i have had a bad cough for a long time....it would keep friends up at sleepovers, but i just thought i was a person who coughed a lot. I looked at a picture of my voicebox that was taken of my endoscopy tonight. It was irritated and red all around it... but it didnt look very swollen..the opening looked pretty normal, so i know this could be worse. I've seen picture of worse damage. If i'm still coughing up mucous is that just swelling of my voicebox..or ist that more acid coming up???
 
I'm going stir crazy too. I just work and come home, work and come home. I dont eat with anyone anymore..i eat alone. Did any PPIs work with GERD and LPR...its not even the LPR that annoys me all of the time..its the nauseas and the regurgitation...plus stingy feeling when i eat more acidic food...will my body ever be on my side again? How dumb of me to think i could eat like everyone else around me. Chocolate before bed and tictacs every day was a horrible idea. And bezos..xanax...and now klonopin(which im struggling getting off)
 
I'm going to continue the kaufman diet..ive heard great reviews.....i just feel too young to be going through this..and then i read other posts of people going through worse and i cry for them as well. It's such a hard world....Its my bad luck but...maybe this is all supposed to be happen to make us stronger...please any advice....some of you have already given great advice. I wrote a list to my GI of my symptons. I just dont understand how everything came back normal on my endoscopy..accept for my voicebox. In the past i struggled with a horrible pelvic pain disorder called vulvodynia. Looking back I remember doing the exact same thing i'm doing now....scared i was going to struggle with it forever....but physical therapy and time healed all of it....so why am i even more discouraged now when i know i have the strength to get through this stuff. We all do.
 
Okay i'm done ranting now...but now all of you are in my thoughts and prayers....i feel at home when i come to this site..i feel like i can talk about my problems and not be judged. I feel like there is hope. Thank you to all of you.
 
Edited to add breaks in text so it's easier to read...

Post Edited By Moderator (dencha) : 12/30/2012 7:47:15 AM (GMT-7)


Andy1986
Veteran Member


Date Joined Dec 2012
Total Posts : 1178
   Posted 12/30/2012 4:35 AM (GMT -6)   
How long have you been on ppis? It took me maybr a month before the pain died down to a more managable level, and i was drinking a lot of gaviscon too. When you have constant reflux it seems to take a very long time for the esophagus to heal and not be as sensitive.

The best thing to do is try and do other things, ive had similar problems with depression and lack of concentration, it does get better, but you just have to keep trying things, like watch tv, or play a game on your laptop. Dont worry if you cant concentrate its normal, it just improves over time. It really isnt easy, sometimes you just have to takr it half an hour at a time. Focus on short term things and just keep the hopenthat one day youll get better.

thegspeak
Regular Member


Date Joined Nov 2012
Total Posts : 196
   Posted 12/30/2012 8:30 AM (GMT -6)   
I want to let you know that i'm putting my email on my profile so we can be gerd-buddies :).

For now I just want to say that I've come to a place of acceptance (or getting close) and I'm even seeing this as a challenge. Maybe even something that has some kind of purpose. I don't think i'm as symptomatic as you and I am on Elavil so not sure how much that comes into it but I have a few ideas since I have a young child too. Here are some things I'm changing around here so I can take care of everyone else without compromising myself.

I feel GREAT in the morning so I'm going to do things like empty the dishwasher, make beds, etc. before breakfast.

As for the food I PROMISE you after the induction phase you can enjoy food again. Maybe it won't be the ones you like best but you'll have new favorites. For instance did you know goat cheese and feta cheese are low acid? I just made myself an egg white omelette with spinach and feta and put it into half a whole grain pita bread. You can also get those tortilla wrap things. It was delicious. I also bought Tropican OJ Low Acid and watered it down so I got the taste of oj too.

I was freaking on the induction but it does get better! I'm a cook and Im debating putting my recipes on a blog... also I've been reading a LOT pretty much constantly (obsessing a bit) and you know what? I can have a glass of wine here and there. If I'm taking good care of myself, unless wine is a big trigger (and i don't think it is) and that totally put me in a great mood. I never drank more than 2 glasses anyway, so what maybe i'll go slow with one glass but that's better than nothing. The only thing I'm reading that are big nonos like EVER is chocolate (ugh) and beer.

Also you like ice cream. Did you know you can try low fat frozen yoghurt when you're off the induction phase? I don't think you can pig out on it or have it every day but I am definitely going to try. I'm also going to learn how to make sorbet with a low acid fruit in my vitamin. I could go on and on but i'll save something for when we chat :)

Can I suggest having the Gaviscon that is sitting there? Just hold your nose. I think you'll be so much more comfortable because of the whole raft thing.

Have to run to airport to pick up my family but we'll chat more!

stacey77
Regular Member


Date Joined Dec 2012
Total Posts : 109
   Posted 12/30/2012 8:58 AM (GMT -6)   
Hey Andy that is a good idea ill try to calm down and focus on other things but its hard cus when i wake up in the morning my throat and mouth is soo dry its ridiculous. There is no use in getting a wedge pillow because i move around soo much in bed. In the morning when i wake up i'm like half off the bed sometimes. ha. Thegspeak, the gaviscon is oo grose...the aniseed tastes like black licorice which im okay with but it burns going down..i dont know whats in it that makes it burn but it does...then im usually ok. The fruit gum really works for me, but i have a history of "not so great teeth" I mean they arent falling off but i try to take extra care of them. Now i am worried all of the time that the acid is going to hurt them. I try to stay busy during the day with my daughter if im not at work. She is only 15 months so she takes up a lot of my time. I love her to death, but sometimes i just start crying because i want to be a healthy mom that can deal with all of the obstacles:( I keep asking myself "what if i have this forever" I have been on PPI's for a long time and it helps with GERD, but i still have LPR. I am so self conscious now its out of control. I'm constantly looking in the mirror to see if my tongue looks normal..or freaking out if im talking to someone and i think my breath is grose. So i just try not to talk as much. I'm so scared to go to the gi on thursday because he didnt want to see me back for six weeks and its only been 2 weeks. The thing is i didnt get a consaltation with him..just went straight for the endoscopy and i really want him to hear my voice and to sit down and talk to me. I didnt know all of that other stuff was on the dropping acid book. I hope there are cheap choices because i live at home with my family right now and don't have a lot of money for expensive meals....but i guess at this point i will spend the extra dollar to buy lobster if i have to. ha. or 20. Thegspeak what are your symptons right now?? Andy what are yours. Has dr kaufman talked to you about surgery Thegspeak? I really want to get on Elavail. I heard it works really well for some people. HAHA. just a thought but we have probably read all of the same posts on Elavail and LPR and all of the same stuff on LPR...I end up reading stories over again cus i've ran out of stuff to read. I just need reassurence i guess. The only place I have found that is up to date is dr kaufmans site and this site. Okay well im going to try and get my lazy self out of bed. talk to you all later.

stacey77
Regular Member


Date Joined Dec 2012
Total Posts : 109
   Posted 12/30/2012 8:58 AM (GMT -6)   
oh and my esphagous is fine...the only irritation he saw was in my voicebox...but my vocal chords get so tired all of the time too

thegspeak
Regular Member


Date Joined Nov 2012
Total Posts : 196
   Posted 12/30/2012 9:06 AM (GMT -6)   
The one thing that I have to still work on is the self consciousness. I have it too. Mostly because of cough and I'm afraid to talk. I've never been so quiet! But it definitely depressing.

Also every time you come up with a new fear (like your teeth) ask yourself: What is the evidence that this is true. (and really try to come up with hard evidence)

That way you can put it in perspective and calm yourself down. Or if you have time journal about what you are eating and how it made you feel. Now that you have run out of things to read you can read your own stuff! :)

Andy1986
Veteran Member


Date Joined Dec 2012
Total Posts : 1178
   Posted 12/30/2012 9:09 AM (GMT -6)   
My symptoms are pretty much constant lump in throat, and burning at bottomnof esophagus after eating which never reallu goes away either. I have been on a very restricted diet, no fat or acid and am losing weight, my symptoms are pretty tame compared to the agony i was in a month ago when i came off ppi for an endoscopy.

I want surgery because i cant move around or even stand up without feeling the pain or discomfort in my esophagus and throat, i just jave to sit in a chair most of the day

stacey77
Regular Member


Date Joined Dec 2012
Total Posts : 109
   Posted 12/30/2012 9:10 AM (GMT -6)   
im sory andy:( When i started the PPi's the lump in my throat has subsided some..I only get it sometimes now. Have you talked to your doctors about surgery?

thegspeak
Regular Member


Date Joined Nov 2012
Total Posts : 196
   Posted 12/30/2012 9:23 AM (GMT -6)   
Stacey no she didn't. I only saw her once. She's a trip. January 17 i'm doing the big tests and I assume she'll give me advice then. To be honest, I don't think my case is severe after reading posts on here. I'm my ideal weight and my symptoms are controllable. I can't imagine having surgery with my five year old and no family to really help with him. But who knows, never say never.

AnotherDay
Regular Member


Date Joined Feb 2012
Total Posts : 20
   Posted 12/30/2012 2:43 PM (GMT -6)   
Stacey,

I know your pain and worry. I've had GERD for nearly two years and it's now intolerable. Luckily i have had a good GP, Gastroenterologist and Surgeon.

The last 2 years have robbed me of my self esteem, belief and happiness. The tests were not that bad, but the after effects of my sanity after my PH test was shocking.

I will be having surgery next year and i couldn't careless about the side effects. All i want is a reflux free life. There is an end in sight for me now.

Be warned though, i really have not helped my self, meds, food etc. Always play it safe.

thegspeak
Regular Member


Date Joined Nov 2012
Total Posts : 196
   Posted 12/30/2012 2:45 PM (GMT -6)   
Another, what happened with your PH testing? Was it the actual test that was traumatic for you?

AnotherDay
Regular Member


Date Joined Feb 2012
Total Posts : 20
   Posted 12/30/2012 3:05 PM (GMT -6)   
The actual test proved to be ok. I was uncomfortable and i had a little split second pain as the tube was passed through the nose, but thst was it.

The main problem i faced was that for a week after the test i lost myself, i'd never been so low in my life.

thegspeak
Regular Member


Date Joined Nov 2012
Total Posts : 196
   Posted 12/30/2012 6:16 PM (GMT -6)   
I'm sorry :( i guess i'm wondering if your depression was related in some way to the ph thing. I''m having it in three weeks and I want to be prepared. Thanks

Andy1986
Veteran Member


Date Joined Dec 2012
Total Posts : 1178
   Posted 12/31/2012 4:37 AM (GMT -6)   
Stacey i have not discussed surgery yet, the health system in the uk is very slow and it takes months to even see a specialist. I am paying for trsts myself to speed it up and may even consider paying for the surgery if the GE wont put me in for it.
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