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GERD & Acid Reflux
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Posted 8/9/2015 8:24 PM (GMT 0)

Hi everyone, I would appreciate any advice or support as I'm lost and not sure what to do anymore. All I know is I'm sick of being sick!
Ill give some background - I'm a 53 year old woman. I lost over 30# within 7 months. I now weigh 86 pounds. It's not a pretty sight but good thing I'm only 5' tall.
In September 2014 after having a croup sounding cough & severe reflux I was diagnosed with having Achalasia and a hernia so large that a third of it was in my chest. I had surgery called Heller myotomy, paraesophageal hernia repair and a partial anterior fundoplication.
I've been having problems again & the Doctors decided to do surgery again- take it all down and do another partial wrap. Two weeks ago i was at the hospital for my pre op but instead I was hospitalized for 7 nights and surgery was cancelled.
This was my discharge diagnosis: Recurrent hematemesis most likely secondary to hypomotility of the esophagus, gastrum and deodenum, a wide and open LES and a mild erosion without active bleeding in the GI junction. Aspiration pneumonia
This is what the GI Docs recommended : PPIs twice daily and Ranitidine at bedtime, STRICT GERD lifestyle modification and THIS is what bothers me the most... a PUREE DIET!! Seriously?? Instead of surgery? I just want this done and over with!! I'm sick of constant reflux, having a full feeling although I'm now afraid to eat because I don't want to regurgitate all throughout the night even though I sleep sitting up in bed and have been for a few years!!! I spit up black blood and have been hospitalized 5x within 2 months (different hospital) - an upper endoscopy is done and they've had to cauterize bleeds in the esophagus due to weak blood vessels.
BUT WAIT...THERE'S MORE!!!!
When i was getting discharged from the hospital after the 7 nights stay I was told I DON'T have Achalasia!!! WHAT??
There's a lot more to my story but I'm even sick of this so I won't go on. Is there anyone else dealing with this?
Thank you for reading this.
Posted 8/10/2015 2:13 AM (GMT 0)
Hi BookJunkie,

Welcome to Healing Well! Wow...you've been through so much. I can understand why you're sick of it all. Wish there was a quick way to get things healed again.

My guess is that they cancelled the surgery because your esophagus/stomach weren't in a good enough condition to handle the procedure. My take is that they're putting you on the protocol they've recommended to get things healed so you can move forward with the surgery in the future.

Try to hold on to the fact that this isn't forever. The pureed diet is to avoid irritating things further. I have no doubt that if you were to take small bites and chew, chew, chew your food until it is a liquid consistency, it would work the same way. You must never swallow anything that doesn't chew to a liquid consistency. Your teeth/mouth can be your blender. You'll have to be very strict about following that rule, though. You were told to eat pureed foods because that ensures that nothing rough goes through your already irritated esophagus/stomach.

Have you visited your surgeon/GI doctor since this hospital visit and surgery cancellation? You can certainly let it be known that this eating protocol needs to be temporary, and your goal is another surgery to get things fixed.

I had the surgery because of asthma that was made uncontrollable because of reflux. I understand the coughing and lung issues. Do you have the head of your bed elevated? Like you, I took PPIs before breakfast and dinner, and 300mg Ranitidine at bedtime.

I have a document that explains how to take PPIs properly to ensure you get the full benefit. If you'd like me to email it, just click on the little envelope on the left of this post and request it. I'll attach it and send it along. It used to be available online, but it's not there anymore. It's really helpful information.

Hang in there. Don't think of this as forever. Take it a day at a time. Let your doctors know how you feel, and that you need to have a pathway to getting this fixed surgically. Patience. You can't rush this healing...unfortunately, internal upper GI tissue takes a long time to heal. Sometimes it seems like it takes forever, but it will happen. Prior to my Nissen surgery I got gastritis and esophagitis several times a year, and each time it took several months to heal. Be sure to follow the eating protocol carefully. If you cheat, your healing will take much longer.

Take care and best wishes!
Denise
Posted 8/10/2015 8:19 PM (GMT 0)
First off I want to say I am so sorry you are going through this. I am a 29 year old female and I only weigh in the 80's now. Its embarrassing to me because I feel like people think I have an eating disorder, all my clothes hang off of me now and I do not like how I look. Of course its summer time too so its not even like I can hide under heavy sweaters and winter coats. When I first got sick my hospital trips were met with Xanax being tossed at me and being accused by doctors that I worry too much about my health. I knew I was sick and something was wrong but what the heck does that matter? Finally I had a endoscope done after referring myself to gastro dr and it came back as esophagitis, GERD, hiatal hernia. I have been in so much pain and can no longer swallow properly because I am not receiving proper care from Dr's its as if they don't care to be bothered.

I hear ya about the diet. I am currently on a liquid diet. All I can eat is ensure, soup, ice cream and pudding at the moment. I have constant reflux and if I don't sit up completely at night when I sleep I really pay for it in the morning. I also wake up every morning with a severely dried throat and mouth as if someone came in when I was sleeping and pumped every last bit of saliva out. I no longer go out with friends and me and my fiance have company coming next week and I am dreading it. I am so embarrassed I have to eat like a toddler and that I weigh as much as one too. I know I tried everything. The PPI's, the sleeping position, the eating only the most plain foods you could imagine, I never smoked I never drank I was never overweight and I am young. I do have lupus though I wonder if it contributes but most Dr's around here don't understand Lupus so they just look at me like im crazy. Actually I think I am becoming crazy from all this. I now spend 100 dollars a week on therapy because I was about to snap and just give up.

I recently reached out to the Mayo Clinic. I just did a post on it. Maybe you should really give it a try. This to me is my last hope I think. I need answers and help and it sounds like you do too. Anyways you are not alone in this and this board is great for sharing. I hope to see more posts from you soon.
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