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idiopathic gastroparesis
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idiopathic gastroparesis

Is there anyone out there that has idiopathic gastroparesis? I am a 32 year old female that has severe idiopathic gastroparesis. Does anyone has or have problems taking any oral meds? I can not take any oral meds due to gastroparesis and its getting frustrating. Everytime I try I end up in the er or being admitted for severe vomiting. I try when my symptoms are under control and wham it starts because I try an oral medication via under my doctor's supervision. I want to atleast be normal in the sense of taking oral meds like everybody else but it is not working. As little as a cold or infection or something else I have to get IV's or shots of the medication to prevent further complications. I ended in th ER not to long ago for trouble breathing,nausea,vomiting,and coughing after having surgery for thyroid and they thought that I had pneunomia but I didn't but did have severe brochotitis. The doctor in the ER was mad at me because I wouldn't take oral antibotics,I explained to him about gastroparesis and he said how do you know that you have this? I told him that I had this since 2001 and detected by test and he stormed out of the room stateing that he is going to call my pcp. He called my pcp and he came back to said that I was admitted but he was still mad me for not able to take any oral meds. Why do doctors in the er don't understand the meaning of gastroparesis? I really think that they need to be educated about this! After this episode my PCP gave me a letter to carry (laminated) stating that I can not take any types of oral meds and under the care of her. She was very upset that there are docs out there that don't understand the meaning of gastroparesis. I also asked medhelp if they can start a forum for people who have gastroparesis so we can help each other.
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88793_tn?1290230777
I've been told my Gastric emptying studies didn't look very good.  I'm not that serious like you.  I can take medications.  Dr prescribed me with Domperidone and Tazac (2nd day).  What is the emptying percentage of yours?

I know some of the ER doctors are very rude.  They treated me like that too.  Once a lady Dr, she warned me "Not allow to come to ER and complaint your heart!"  She was like wanted to batch my head on the wall.  So scary!  If they don't understand they should call the specialist to explaint that.  They can access via internet or medical information too.  I think they were playing games with you.
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Avatar_f_tn
Sorry that I didn't get back to you quickly,I had trouble login on. My emptying percentage was 16% when I was first diagnosed in 2001. I was in very bad shape. I went from 140lbs to 100lbs within a week and half. At first I though it was 24 hour stomach bug being that it was going around in my office. I paid no attention to it being that I though it would last 24 hours. I work at a hospital so basically I knew to rest and stay hydrated. After 3 day when it wouldn't go away I went to my pcp and she gave me meds and said that I had acid reflux. I waited a couple of days and then things got worse because I couldn't eat at all or drink any fluids. I went back and saw her and she sent me for some testing. I couldn't do some of the testing because I could drink any of the contrast or other drink that they gave me. It just wouldn't go down. Radiologist called my pcp and they thought that I had a blockage and was admitted. I stayed for a couple of days and then she sent me home. No blockage,just irratations from vomiting too much and dehydrated. As time went by she didn't know what to do and sometimes it bother her when I got sick. I knew it was time to see gastro doc being that nothing was done with her. I ended back in the hospital and thats when my gastro doc did the emptying scan and told me that I had severe gastroparesis. I had to get a picc line put in and tube feeding and TPN for a month because I couldn't eat and drink any supplements. Every supplement of every way they tried I ended up vomiting. I got a new pcp who is my neighbor for a long time and I trust her. Between my gastro and new pcp they sent me to UPenn. My gastro,new pcp and the specialist are the ones who got this under control now! I just have to make sure I get my botox shots every six months and try not to take any oral meds so it doesn't stir things up. I have gain some of my weight since then but not my goal weight yet. Sometime I gain some but then I loose some of it when I have a flare up. At my first diagnoses I was on reglan,zelnorm,zofran,and appeite increaser but I had to go off of reglan because it made one of my blood level too high and had other side effects that wasn't fun. When botox came out I went on it and I got off of all other meds. Its been working ever since. I basically saved my life. I just need zofran when and if I get nausea or have a flare up. My gastro and my new pcp gave me their cell phone numbers just incase that they were not in their office if I was to have a flare up. Also to call them before I go to er so they can met me there if it is after office hours or to give the er a heads up about my history. I am hoping one day there will be a cure for gastroparesis and we all could go back to our normal lives.
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Avatar_f_tn
Wow, I feel for you.  I was wondering if you have had an endoscopy?  It's too bad your regular doctor didn't refer you to an GI Dr sooner but I'm glad you are getting the care you need now.

Also, did you ever go to see your GYN?  Just to rule out OC.  That fullness feeling is a symptom of that, too.

Good luck to you!
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Avatar_f_tn
I had endoscopy done and during it they found h pyhlori and did the gastric emptying scan and fail the emptying study. I didn't have the fullness feeling just nausea feeling and vomiting. I saw the gyn at that time and she told me it was gastroparesis also. She knew about gastroparesis and suspected it being that it was post viral.
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88793_tn?1290230777
I had the upper and lower endoscopy but found nothing.  (Twice on the upper with different GI dr)  This time the gastric emptying studies is requested by a GP not a GI dr.  GI dr said nothing wrong with me and told me don't have to go back.  I think it doesn't matter for me what specialists, MD or professors are.  As far as they care, listening, they could be your life saver.  Even a GP will do a better job than them.
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Avatar_n_tn
When I was diagnosed with idiopathic gastroparesis over 20 yrs. ago (non DM) I was told my gastric emptying time was 5 X's slower than normal (all my testing done at the Cleveland Clinic).  I didn't know to ask at the time ' what IS normal, and how would you rank the seriousness of my disease.

As a side note, I am also hyperacidic and take 80 mg. omeprazole daily, which was a replacement for the 30 mg. Prevacid I took daily for years (insurance switch).  I also have IBS, which for decades only involved constipation, but has very recently taken a turn the other way, and is affecting my working.

Would appreciate your comments.
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Avatar_n_tn
I feel bad for the people that actually have the disease, but I also know that a significant number of people use this disease as a crutch to hide their serious bulemia issues, my ex-wife being one of them. The people with bulemia always seem to lie about it to no end, even to their significant others and doctors. This is why they are treated harshly when they go to the ER and such all the time because they never tell the truth when confronted with any kind of epidemiological history. These people need to be called out because the bulemia needs to be treated first and foremost.
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1624629_tn?1299228228
I'm a 33 year old female and was diagnosed with gastroparesis in 2005.  I was on a jejunostomy feeding tube and TPN for 7 years.  I got off the TPN 2 years ago and off the feeding tube about 1 1/2 years ago.  Last week I had an EGD because my gastroparesis is flaring up big time.  Already I'm on a liquid diet and have lost a bit of weight.  I can't take Reglan due to bad side-effects and reactions,  and am allergic to erythromyacin.  I am really concerned that this flare-up is going to last long.  What is the typical time for a flare-up to last, and what can I do to help it go away faster?  Any suggestions/ comments would be greatly appreciated.  Thanks, vvfrog.
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Avatar_f_tn
I'm 31 two years ago had my gallbladder taken out and 6 months after that was diagnosed with gastroparesis. ER doctors DO NOT understand. I have been treated like a drug seeker and fake since day one. To top it off I was passed the jean of high tolerance to medicine  from my fathers side. I have tried all the natural ways and drug ways to help less but am not having any luck but I can still keep my weight for the most part. besides the GI doctors I have seen all the others have been nude and nasty at any hospital . I have witch to see if there was a difference.  I now take my medical records on disk with me wherever I go.
  This '' Invisible  Pain" I wouldnt wish on my worse enemy !
Good luck to all.
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