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MAGLITE7's Photo MAGLITE7 Posts: 736
12/2/09 12:00 P

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The connection between GP and GERD makes sense. I tend to burp a lot (sometimes very loud and embarrassing) and I frequently have acid come up (I call it "vurping" for vomit+burp). I have gotten sore throats and hoarseness from it, though never had it come all the way into my mouth.

In the past a double dose of Prilosec has helped control my acid for the most part, and fortunately my insurance will cover the extra dose. I do have an issue with my fear of long-term use of any medication, though my Dr. assures me that long-term Prilosec use will be fine. I guess it's a choice between constant distress now or fear of whatever it'll do to me in the future.

I cut out coffee and spicy food a long time ago (doing both made me so sad -- I love coffee, Indian food and Buffalo wings). Lately I've cut out raw veggies, beans, and milk, which were all giving me issues. I still have been in pain though. So now that I have an actual diagnosis I'm going to try liquid and then move up to soft foods. The thought of being able to get through more than a week without any "episode" is encouraging me.

I tried SlimFast as a diet about 10 years ago (I of course gained all the weight back) but I remembered liking the shakes, so I got myself a box of strawberry. So far today I've just had juice and boullion, but I might try one of those later.

It is so great to talk with someone who actually understands! Thanks so much!

"Your worst enemy cannot harm you
As much as your thoughts, unguarded.
But once mastered,
No one can help you as much."
-The Dhammapada


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LUCKY-13's Photo LUCKY-13 Posts: 11,837
12/2/09 11:23 A

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Hi Maggie,

My GI doc believes that GP and reflux (or GERD) together are pretty common. Seems like when food is in your stomach waiting to digest, more acid builds up than is needed. Without the stomach muscles doing its job, more and more acid continues to flood the stomach and eventually the acid comes up. This acid can do a lot of damage to other areas than just your stomach too. About four months ago the acid level was really high and triggered my asthma. The acid can actually seep into your lungs, and of course all the way up into your mouth - where it even scalded the skin inside my mouth. Sorry if this is TMI.

It wasn't until I got my reflux under control that my asthma got better. My GI doc did a pH test using the Bravo device. If you're not familiar with this, here's a sort of brief description:

"The Bravo pH Monitoring System is a catheter-free way to measure pH. The system involves a pH capsule, about the size of a gel cap, that is temporarily attached to the wall of the esophagus. The capsule measures pH levels in the esophagus and transmits readings via radio telemetry to the Bravo Receiver worn on the patient's belt or waistband. The patient also records symptoms he or she experiences in a diary by pressing buttons on the receiver. The device collects pH measurements for up to 48 hours. After the study, data from the receiver is uploaded to a computer and diary information is entered for analysis to aid in the diagnosis and plan treatment.

The Bravo Delivery System is used by a gastroenterologist to insert the pH capsule through the mouth and position it above the lower esophageal sphincter. Once the pH capsule is in place, suction is applied, drawing a small amount of esophageal tissue into the capsule and locking it in place. The delivery system is then withdrawn and the pH capsule can begin measuring pH levels. Normal patient activities such as swallowing, eating and drinking should cause the disposable pH capsule to detach and pass through the digestive tract in 5-7 days." by Dr. Todd Eisner, AcidRefluxConnection.com (a health site from HealthCentral.com).

My acid pH is 4 times the norm and during a 48 hour period, he saw a lot of acid accumulating. I'm currently taking Nexium, 4 capsules (4 times the normal dose) and finally getting relief. Yeah, my HMO said it would pay for one dose but I'd re responsible for the rest. Thankfully the manufacturer for Nexium is also helping with the rest. My GI doc helped set it up.

This is a long way of saying, yes your GP, and even reflux will vary. I also had to give up things that make reflux worse: coffee, tea, tomatoes (cooked or raw), chocolate, spicy foods... Just about everything that I love. But getting it under better control has been wonderful. I still have maybe 4-5 episodes a month where the acid rises into mouth - while I'm sitting in a chair! (Usually when the acid rises, it's when you're getting ready for sleep and you're all tucked in bed, horizontal, and THEN it pays a visit!)

Liquid diets can be very helpful. I had to drink Ensure for a while. If you have to drink this, try it VERY cold and with a straw so you don't smell the vitamins in it. The chocolate was the only flavor I could keep down.

Life's an adventure ... take it one step at a time and don't underestimate yourself! You're capable of more than you think you are! How do I know this? You're still here aren't you? That means you haven't given up!


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MAGLITE7's Photo MAGLITE7 Posts: 736
12/2/09 9:54 A

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Thanks Lucky! It is nice to know that there are people I can talk to about this who'll understand. When I thought I had it 3 years ago, I got so many people just thinking it was so weird. It's also hard to tell people there is no cure, and no understandable reason why either.

The stress thing is so true! When I first started having real issues was when I was planning my wedding. It came back pretty badly when I was working on my dissertation too. Then moving to a new city, etc. My husband came up with a mantra to try and remind me not to get stressed -- "Don't get stressed or you won't digest!" :)

It seems like for me I have bouts where it is really bad and almost everything I eat causes me pain and lots of reflux, and other times where I seem to be okay even with some raw veggies as long as I don't eat too much. Is that common? The Dr. seemed to think that having it vary in severity was normal. Just curious what you think.

I'm going full liquid for a few days here to try and alleviate my immediate symptoms (I've been in a lot of pain the past month or so), and I've got a new presciption for Prilosec (cheaper with my copay). I'm definitely going to look at those articles!

Thanks,
Maggie

"Your worst enemy cannot harm you
As much as your thoughts, unguarded.
But once mastered,
No one can help you as much."
-The Dhammapada


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LUCKY-13's Photo LUCKY-13 Posts: 11,837
12/1/09 9:21 P

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Hi Maggie!

Welcome to the GP team!

I read some of your blogs and I can feel your frustration. Knowing something is wrong and the doctors telling you otherwise can be VERY frustrating. It sounds like you listen closely to your body if you had a feeling that you had GP three years before it was confirmed. Maybe the doc at the Student Health center was a rez? ;)

Losing weight with GP will be a challenge, but it's not impossible. The same thing is said about women with an underactive thyroid (yeah, we've got some of that here too), but we're a determined bunch who aren't going to give up easily!

Take some time and read up on the articles we've got Links to. The info will help you explain GP to people who might think you're exaggerating (trust me, you'll find someone who will tell you, "Well, that's no disease! I don't digest fiber either! That's what keeps me regular! No one digests fiber!!"). LOL The funny thing is she is now my former doctor's former nurse. GP is so unusual that a lot of people just don't "get it."

Everyone seems to have their own list of things not to eat, and you'll get familiar with yours quickly. I've had it for over 10 years, but there are people here who have had it longer than me. Everyone has their own level of severity too. There are some members who are still lucky enough to eat some form of protein (meat = lots of fiber), and a few who can keep a salad down (but not many).

Eating a balanced diet will be your biggest challenge. Losing weight can still be accomplished through exercise (dancing is REAL good!!) and watching your calories. I'm not sure where your doc and you stand on taking vitamins, but since they're hard and slow to digest, you can build up vitamin toxicity if you have too many of them still undissolved/undigested. That's one of the things that makes a balanced diet so difficult.

One other big thing I feel I should warn you about: stress. If you haven't noticed it yet, stress will really slow down your digestion. It'll effect your ability to even digest foods that you had been able to just a few days prior. If you're a stress eater (and I'm not sure who isn't these days), you might want to munch on carbs which are very easy to digest. Given enough liquid and some gravity and carbs don't usually hang around too long (that's why it's easy to get hungry so soon after munching on, cookies, for example). Choose your carbs wisely though - avoid the grease, sugar and salt because they'll only cause problems later.

Sometimes I think I could write a book on GP, but not from an expert's POV, but maybe as a patient's. Nah, don't have the time! LOL

I'll shut up now so you can ask questions! I'm always willing to share what I know (obviously!).

Hugs,
Lucky

Life's an adventure ... take it one step at a time and don't underestimate yourself! You're capable of more than you think you are! How do I know this? You're still here aren't you? That means you haven't given up!


 current weight: 208.0 
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MAGLITE7's Photo MAGLITE7 Posts: 736
12/1/09 5:59 P

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Hi all. I thought I had gastroparesis for 3 years ever since an endoscopy found food in my stomach after 10 hours. But then I had an emptying study (where you eat the radioactive eggs) and my Dr. (from a student health center) at the time told me the negative result from that test said I didn't. Now I finally have real insurance and got to see a gastroenterologist and he says I definitely have it. So I'm somewhat confused, but at least I have a diagnosis. I'm looking forward to seeing whatever advice you guys have -- there are some things (like refried beans) I don't know if I'm prepared to give up, but I'd really like to not be in pain so much!

"Your worst enemy cannot harm you
As much as your thoughts, unguarded.
But once mastered,
No one can help you as much."
-The Dhammapada


 Pounds lost: 51.0 
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58.5
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