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Old 03-13-2009, 03:43 PM   #1
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Gastroparesis.....please share 5

Wow, I cant believe that I started this thread a long time ago and we are on chapter 5. I am very glad that we can all come to a place and talk about our struggles with Gastroparesis. I hope this thread continues to be a help for all of us that suffer from gastroparesis.

May the book continue....

 
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Old 03-13-2009, 05:35 PM   #2
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Re: Gastroparesis.....please share 5

Hello all,
Recently someone asked about erythromycin. I have had a lot of success with it & I appreciate how cheap it is. I started on reglan (10 mg 4 times daily) in December 2008, after I learned that I have gastroparesis. Although it took an adjustment to take medicine 30 minutes before eating, the medicine worked great. I had thrown up through all of the prescription nausea medicines and my doctor finally sent me to a GE. All was well for 3 weeks and then I started lactating. I do not have any children and it freaked me out. My GE switched me to erthromycin (250 mg 3 times a day)for 6 weeks, and it was great. Then he had me go back to reglan 5 mg twice daily - to avoid the lactation side effect. Well, that did not work and my symptoms came back. Today, he switched me back to the erythromycin. For some people, erythromycin's effect on the stomach wears off but it hasn't for me. I'm to take it until that happens. Perhaps it will not happen to me. I am so happy to be back on it.

Next week, I go for a test to see if I have diabetes. My doctor said he didn't think I did but he wouldn't be doing his job if he didn't check. I am 33 and am 20 pounds heavier (up to 146) than I was 4 years ago. I've actually lost about 10 pounds since this all started. Maybe that rapid weight gain (all 30 lbs happened in a matter of months) caused or is a sign of diabetes. I don't know. I was trim my whole life up until late 2005, when I started practicing law and my neck flared up. My cholesterol is up too. Anyway, we think my gastroparesis is just a side effect of the pain medication I have to take for my neck. With any luck, I do not have diabetes, my neck pain will go away, and my stomach will start acting on its own. Until then, see y'all around here!
H

 
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Old 03-15-2009, 04:51 PM   #3
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Re: Gastroparesis.....please share 5

Sam78, thanks for starting a new thread, I have come to depend on this site to help me thru difficult times and get answers, so for that a BIG THANKS, Helen, glad erythromycin did nothing for me, I did try it for some time but the only thing that has helped me is the domperidone, and I am hoping it will for a long time. I know the main thing is diet! diet! diet!..as I have learned.. Good luck

 
Old 03-16-2009, 09:11 AM   #4
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Re: Gastroparesis.....please share 5

I am new to this thread, but I have a question for all of you-- I have read some of the posts, but not all. I wanted to find out how you were all diagnosed with Gastroparesis. Though my doctors have all said that I have "functional dyspepsia", I am worried that I might have gastroparesis. I had one gastric emptying study done a year ago but it came out normal. Should I have it repeated? The reason I am concerned, is that I have been on Domperidone for 4 weeks and haven't noticed any difference. This is extremely disappointing to me, as there are not a lot of medications that they can prescribe to help one with functional dyspepsia.

I have not had any vomiting (though I do occassionally get nauseous after eating a "large" meal (300-400 calories) and I feel very full, bloated and gassy. It goes away after about 2-3 hours, but during that time I do feel uncomfortable. I was having pain for a while, but it's not as much of an issue anymore. I am able to eat 3 meals a day with a couple of snacks, but the resulting fullness is really annoying. I tried to go walking with a girlfriend after eating a small salad for lunch the other day and felt like I was going to throw up from being so full.

So I'm just wondering how the doctors determine if it's gastroparesis or not. Is there a test other than the gastric emptying study? I'm just tired of feeling full and uncomfortable after meals all the time. Any advice is welcome and appreciated...thanks!

 
Old 03-16-2009, 01:44 PM   #5
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Re: Gastroparesis.....please share 5

I had a GES and it was marginal, but they said I had GP. I was about to be dx'd with a faulty gallbladder but the test for that was inconclusive and I don't have GB pains so GP it is. As far as I can tell, they use the GES along with the other symptoms (and things ruled out from other tests) to make a diagnosis. Your symptoms sound like GP but it still could be other things.

If you think it may be GP, consider how/when it all started, if it can be traced to a virus, or diabetes, or Thyroid you can maybe handle it differently than say, if it was related to a surgery.

 
Old 03-16-2009, 01:59 PM   #6
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Re: Gastroparesis.....please share 5

mizzaj, I had the emptying test to determine my GP. after 2 hours I still had approx 70% still in my stomach, plus was unable to even eat half of a sandwhich and be totally full. I also had alot of vomiting and was dropping the weight. I have now been on the domperidone for about a year and have great success with it. No clue how it happened except a slight bout with a virus, but I do have issues with my thyroid, but the doc's are not saying that's the cause but won't rule it out either. At first they said it may go away as fast as it came on, BUT since I've been this way for 2+ yrs now they say the chances are slim of it going away. You do a life style change.

 
Old 03-17-2009, 04:16 PM   #7
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Re: Gastroparesis.....please share 5

Little update for you all....

I went to see the consultant this evening to get the results of my capsule endoscopy (swollowing a small camera to look at small intestine) and it turns out that it didnt leave my stomach. This was 6 and a half hours of recording. He is now asking me to have another gastric emptying study to see if the figures have changed (previously 50% after an hour). I have lost even more weight now (roughly a stone and a half in 6 months) and it is showing no signs of stopping. I am eating less. He is now talking about referring me to see a professor who specialises in GP. Im afraid to say we might be thinking down the pacemaker route (which is very scary- but a last resort).

Quick question: Do you find stress increases your symtoms?

k

x

 
Old 03-18-2009, 04:08 PM   #8
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Re: Gastroparesis.....please share 5

Stress = big problems!!!!!!!!!

 
Old 03-18-2009, 05:06 PM   #9
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Re: Gastroparesis.....please share 5

Totally agree with Sam78 on stress... it's a major part of all this

 
Old 03-18-2009, 05:24 PM   #10
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Re: Gastroparesis.....please share 5

I find it hard not to be stressed by the situation itself. Just dealing with all of this has created a stress that I'd never known before. Which then creates a vicious cycle.....

 
Old 03-19-2009, 02:14 PM   #11
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Re: Gastroparesis.....please share 5

No i mean does external stress influence your symptoms. like a stressful day at work make your symptoms worse or a bad patch in your personal life. I am going through a particulary bad time at the moment in my personal life and my consultant wants to wait a month before conducting anymore tests on me. I didnt realise that stress would infulence this.

x

 
Old 03-20-2009, 01:03 PM   #12
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Re: Gastroparesis.....please share 5

yes tinker, external stress can certainly make your symptoms worse!

 
Old 03-21-2009, 03:31 PM   #13
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Re: Gastroparesis.....please share 5

Thank you for clarifying that for me. I didnt realise that it could be such an influence. I am going through so much at the moment (health, personal, professional) i dont know what is going on. I am trying to concentrate on everything equally but when ur told you might have to have a pace maker fitted to your stomach, it kinda throughs everything else out the window. I am going through such a rough patch at the moment and I dont know what to do. How do I prioitise all of these things. I am so scared about my health and its making it worse. Nobody seems to understand that I am not hungry. I just feel so full up all of the time and no one seems to understand that. I am keeping a food diary and I am shocked at what my intake is. I am not a small girl (roughly 167lb) so the weight loss is good in a way but I am eating no where what I should be. BUT IM NOT HUNGRY!

I am feeling so lost at the moment. I am training to be a nurse at the moment and I am hating being the patient.

I am so sorry to rant but I am feeling so crappy at the moment. I am really sorry to write this on here but I have no idea where else to write it. I feel so alone. Do anyone else ever feel like this or is it just me?

Thanks

k

x

 
Old 03-23-2009, 10:52 AM   #14
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Re: Gastroparesis.....please share 5

Okay all- I need to vent right now. I have had the same gastro doc for a few years now. They have always been busy and it has always taken a long time to get anything done through them. However, this is a serious condition, right? This condition totally impairs my life and I am 30 years old! So I call them and leave a message to possibly get and try eyrithromycin (how ever you spell it) and find out that the doc is out on medical leave. Okay, fine, can you give my information to someone else? "No, we don't do that here". So, the solution? WAIT. How long? No idea.

Two weeks go by and I get no phone call. Obviously, my condition is not important to my doctor. I'm sorry, but if you need to go out on leave, shouldn't you put your patients in someone else's hands? What if there was an emergency? They are just going to say "Sorry, we can't help you right now, the doctor isn't in.?"

So I call today and leave a message with the nurse. I wasn't rude, I was just straightforward. I said that I know she was out on leave, but if I need to come in a see a PA or whatever, I would. I needed some kind of resolution because this illness is really inhibiting my life right now. I asked nicely if they could call back and they did. TO YELL AT ME.

The nurse was a total you-know-what and was totally rude. Her tone, her shortness, everything. She said "The doctor is recovering from breast cancer..." (Okay, and I am supposed to know this???? Secondly, doesn't she have someone covering her charts???). She says, "So that's why we haven't gotten back to you on the whole eurythromycin issue...and your problem..." "I can get you in Wednesday at 1:15." Totally short and a b**&h!!

How is it that I can have a doctor that is so inconvenienced by me? and Yet I feel bad about it? I'm calling around today to get a second opinion. Have any of you had a second opinion? If so, what did you say to the new doc? ANY help would be appreciated!

Sorry for the rant!

 
Old 03-23-2009, 12:47 PM   #15
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Re: Gastroparesis.....please share 5

Melissa.. totally understand your frustrations. Coming from somone who works with physicians, you should see your doctor on wednesday and you should let her know how you were treated. Many times they have no idea that their patients are being treated this way and she may be more apt to listen to you if you are honest about how you are feeling.

 
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