my flare ups with gastroparesis

i have gp and man!! it has been very ruff. it all started 2 years ago i felt a huge pain in my uper abdomin and lower chest like heartburn but wey wey worse followed by uncontrolable vomiting and cramps in my stomach i thought i was dieing from all the pain..i got treated in the ER with 25mg phenergen and 2 mg duladid and i felt better went home 4 hours later
everything started back again. i got emited and GI dr said i needed my gal blader taken out i said ok !!please do what ever u must to take away the pain..they did and i still was having these same symtoms. i was scared im 25 at the time
and i just about lost my job from geting sick so much..i was later told after many test like gastric emtying, and stuff that i have gastrpparesis..well i later found out that when i get these bad pains and vomitng this is called a flar up..im curently on reglan,bental,phenergon,and tilox for pain at home ..iv been in and out of ERs like i live there. sometimes i get treated so bad sometimes they think im faking my pain and im just trying to get high off of pain meds but i really do be in lots of pain. i mean literaly in the waiting room vomiting back to back cramping and falling on the floor in pain and they say im faking it but my medical records say i have gastroparesis. most of the time it takes iv 2mg dulaudid and iv 25mg phenergon to stop my flare up but some ER drs give me just one mg of dulaudid and say go home. and i still be in pain. its crazy how i get treated i read about plenty of others going threw the same thing. we are not faking this is very real and this has changed my life. my gi dr acts like im my pain is caused by stress and have tried giving me anti depresents
i wish it would all go away i was just in the hospital 3 weeks ago for 9 days and i cant go a whole two months without geting a flare up somtimes i get them back to back and have to get emited to get my body under control ..i use to have a normal life i was a electrical contracter now i can no longer work contruction . i dont have ensurance and dr bills are threw the roof. if anyone else has this same sickness pleas email me its ruff going threw this alone..i live in columbia sc but im willing to travel to talk to the right dr who will treat me like i have a illness and not a drug problem please someone tell me if your drs are better and tell me there info so i can get some real help when i go to the er

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I am so sorry you are going through this. The cramping is bad enough and then when you have to (excuse the word) hurl to vomit, the stomach pain just literally doubles! In my own experience I believe my last er visit for this problem didn't go so well was because the attending dr told me "if you have GP you need to be more careful with what you eat because there is not much we can do once you are reacting to whatever you put in there". Just like that.
I really hope you find the needed answers to this.
God bless you.

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1984: I feel your pain. Before I got the GP diagnosis that's the way they treated me in the ER during a flare up. They also did the same things for me only to have a worse flare up after they sent me home. I live mostly on liquids and tiny bits of food with it. I also take Percocet two pills per day and Zolfran twice per day for nausea and vomiting. I'm also on antidepressants which cause motility problems also. It's trial and error every day. I don't go out hardly at all and I feel so bad for my wonderful husband as he has no life except watching tv with me. Heis still working and works out of our home office so at least I can reach him if the GP gets out of control. He then talks me through the pain. Without him I just don't know where I 'd be. God bless all of us till they find a cure or treatment for us.

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See if you can get a referral to Dr. Ringel at UNC Hospital. He diagnosed me and is great. I have met several people at the hospital that have traveled there from SC, and I know it's a long trip, but may be worth it. The hospital also has a charity care program to help people that don't have insurance, etc, that will help woth the bills. Good luck.

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Tired 42: where is UNC Hospital? What state as I'm in WI. What did he do for you and are you all right now? I will thank you in advance for any info on your case of GP. God bless you. Kathy

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Sorry Msksmythe - I was actually replying to 1984sg. I didn't realize there would be other posts in between (new to this). UNC Hospitals in in Chapel Hill, NC. It took me 6 months to get in with this Dr, but it was well worth the wait. At least I finally have a diagnosis! (Not much relief yet tho). I had been thru a bunch of tests with a local Dr - I'm from a small town - and everything was OK. As far as he was concerned, I just had bile reflux and needed to eat 6 meals per day. I had been having nausea and vomiting for months, and I was just about to go crazy. When I finally saw UNC Dr, he did a gastric emptying study, and that confirmed the GP. I just started on Domperidone last week, and can't see a real difference yet, but gonna give it a little longer. This is sure no way to live. I don't usually have the severe pain that some of you are describing, but the nausea is almost constant, and most times it's a relief to throw up. It doesn't seem to matter what I eat, as what doesn't make me sick today, very well may tomorrow. I find myself apologizing if someone takes me out to eat and I get sick - I truly feel like I've just wasted their money. I sure hope these meds will do something - I'm miserable! I think it's wonderful that you have such a great support system in your hubby! Take care.

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I have gastroparesis also and spent 6 months trying to figure it out and get it under control. There are wonderful doctors in Pittsburgh, Pa at the Center for Digestive Disorders. It is part of the Allegheny General Hospital. They treat tons of gastroparesis patients there. They have clinics that bring you in and let you meet other people with the same disorder. There are several doctors that will meet with you and give you a plan for how to control the disorder. I learned a ton about the disorder there. I found that most doctors and ER doctors do not understand the disorder at all. The first thing that all of you are doing wrong is taking pain meds. Narcotics slow the digestive tract. They will give you pain meds that are non-narcotics to help with the pain. Most doctors do not seem to understand this. Also, they will get you on domperidone to help with the gastroparesis. I order it from Canada and it works great for me without all the side effects of reglan. They give you lots of alternative treatments too. I really recommend checking it out. They seemed to truely care and I believe they saved my life. I was ready to give up. Dr. Lebovitz is the main doctor, but the other doctors I met with helped tremendously. The phone number is 412-359-8900. I highly recommend this group. If you can find another digestive disorders clinic closer, try it out. These doctors deal with these conditions everyday. Like I said, most doctors don't know much about the disorder and go about treating it completely wromg. In my case, they made me worse.

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CRyan: thank you so much for the information. I will try to find something closer. I know pain meds slow down the motility of the stomach but I can't live with pain. I only take two a day w/APAP 5/325 tab Percocet. Lowest dose there is. So far it is keeping the pain under control for me. I 'm ashamed to admit it but I smoke pot in the evenings and it takes the nausea and pain go away. I get it from a cousin who takes medical marijuana . I would give anything for the government to allow each state to sell medical Marijuana
as it really works and allows me to sleep all night. I know it's illegal in my state but I do what it takes to make this GP somewhat easier to live with. This is something that works people. Thanks again CRyan for all your information on what you have done. Are you back to normal after consulting with the motility Dr.s.

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I have been doing great! I did great for 6 months after my diagnosis and then I had a set back in January that lasted for almost a month. My gastro doc did a procedure and opened up a narrow opening in my stomach and the vomitting stopped. I eat almost everything I want. Sometimes I get nauseated, but that's about it. Good luck finding a doctor that knows the disorder well.

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I live in Atlanta GA, does anyone know the right doctor for GP please?

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Tired42:

Count on at least three weeks before you see a difference with the domperidone.

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1984sg-
Some GI doctors lack bedside manners but don't let them make you feel that it is all in your head. As far as the antidepressants are concerned, there is a lot of good research out there on the brain-gut connection. After reading the following article I wanted my GI to put me on an antidepressant.

http://www.med.unc.edu/ibs/files/educational-gi-handouts/IBS%20and%20Antide pressants.pdf

I know it focuses mainly on ibs but it includes functional motility disorders which GP happens to be.

Good luck!

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My regular GI who has been wonderful at trying new things on me to see if anything helps until I got to see a specialist prescribed me hyoscyamine 0.125 mg disintegrating tablet. I do not take it on a regular basis, but when I am having a major flare up I pop one in my mouth and let it do its thing. I was given clearance by the GI specialist to take 2 every 2 hours when I'm having a flare up and it has been great for me, not perfect but it allows me to not be bent over in two in horrific pain and allowed me to not have to go to the er and also not have to take a narcotic.

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Sakrijj: what is the drug hyoscyamine for (nausea or pain) ? Do you empty out just taking this drug? I need a daily laxitive also as the pain med makes me constipated. Oh I have so many questions. I live very rurally and we have no GP motility specialists near by and my GI specialist just kind of fired me as he figured it was in my head. Sad because he is one of the best . St. Luke's in Milwaukee. He did not even think of GP. I just wake up and pray for sleep again. Some life huh. Thank you again for all of your information. Kathy

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The 1st specialist I was to go to was out of Froedert, and man was that a joke a complete waste of my time. I asked for another recommendation and was set to see Dr Gaumnitz out of UW Madison Hospital, it was a drive but he was so patient and understanding. He is even allowing me to try natural items to help me, I have had some success with Lily of the Desert Aloe Herbal Stomach Formula Fresh Mint and the Natural Calms, didn't see much with the calms yet but the aloe usually helps, not to empty me, but to make it a little easier to pass. The hyoscyamine is for the stomach cramps and pains that come along with this disorder, either from me eating the wrong thing, eating at all or whatever causes the pain to start ramping up.

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Veronica, I am in North Georgia and I see Dr. Jeff Williams, gastroenterologist, in Athens. He is super nice and did the gastric emptying test for me and nailed the gp dx, but he didn't help with nutritional deficits from the gp.
Cath

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Actually, I just got an email from my Dr Friday that said they had new info about domperidone being linked to cardiac problems, and I am to discontinue the use of it. WHAT DO I DO NOW????????????

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Tired42: I just saw your post about domperidone causing heart problems and you have to discontinue its use. I had heard and read about this possibility. I'll just reiterate how I cope. I start around 7 with Zolfran (an anti- nausea) pill. Let that work for an hour, then I take aciphex for an esophageal hernia for backup into my esophagus. Then I take citalipram, and clonazapan both are anti depressants. Then at 10 I take two Percocet lowest dose and then I drink a hot chocolate and later I usually drink a Boost. I also take Mirilax for constipation I cap in 7- up and that keeps me going. Sometimes the Boost makes me have the runs but that is good after you have constipation for a few days. I pick at foods off and on like rice krispies, grilled cheese, yogurt (yo plait) gluetin free.1/2 sandwich, never a full one. Little amounts. I don't go out much as I am always afraid I might get the runs and I can't eat a meal anyhow.i will tell you that Zolfran and Percocet are my saviors for at least no pain or nausea. Still mighty depressed being housebound for over a year now. God bless you and take care and keep in touch. Kathy

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Thanks Kathy. I have tried Zofran nomerous times, and it doesn't work for me. With "normal" nausea/vomiting, Phenergan still works, but doesn't seem to be effective with GP. I still work, so pain meds are out, and I don't experience bad enough pain on a regular basis (in my opinion) to use them anyway. I also try not to take them unless it's absolutely necessary due to the negative impact they have on GP. I have numerous other health issues (OA, fibro, vision problems, and some others) and came across Ehlers-Danlos Syndrome in this discussion group yesterday. I have many of the symptoms that are associated, and am thinking this may be the culprit behind it all - like I have finally connected all the dots! It even causes GP, which I have had a very hard time understanding why I have it!! Now I just have to find a Dr to listen to me - probably the hardest part of all!! I'm glad you have a system that seems to work for you - to some degree, anyway. Take care!

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