feeling hopeless

i've been suffering from this condition for almost 8 years now. i've gone through every test imaginable and have tried so many different medications and nothing ever helps. my gastro doctor finally gave me a word for it yesterday. he wrot "gastroparesis" on a slip of paper and told me to go home and research it. then he told me he couldn't help me anymore and not to bother coming back to his office, that if i really wanted treatment my best bet was to leave the country, which is out of the question for me. i'm 20 years old and am at risk of losing my job over this eventually. it is a constant struggle to get through every day when i am in pain and feel like i'm going to be sick on a constant basis. they've got me down to one solid meal a day at this point and now i dont even have a doctor to help me. i have no idea what to do and i'm feeling so overwhelmed and hopeless at this point. this is interfering with my life and i'm scared that its only going to get worse and noone will ever help me. i really don't know what to do and would appreciate some advice. what are some things i can do to help with being in pain, exhausted, and nauseous all day every day? i just want to live my life and stop being a burden to everyone around me.

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Sounds like you are better off without this doctor.

There is no "cure" but people have found relief. Through anti nausea medication, pain medications, tube feeding, etc.

There ARE options for you.

Best would be to see a motility specialist. Are you under your parent's insurance? Are you able to talk with your primary care physician? They can refer you to either a motility specialist or another GI doc that could refer you out. You could do research ahead of time of the motility specialists in your area.

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Hi Brittkb, I can't believe you've had this this long and just diagnosed, your better off with a doctor that knows about GP(Gastroparesis). This is the place for reasearch, encouragement and just being able to talk to people that have this disease also.
There is currently no cure but very many ways to control and "live" with this.
Best of luck-Laura

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Brittkb- Where are you from? You said the doctor told you that the best way to get treatment would be to go to another country. Just curious where you are from, and what country it is that he thinks can treat you?

I am from Canada, and it has been suggested to me that I travel to the U.S. to get treatment, like the gastric pacemaker. We do not have very good access to this treatment here.

The struggles you are experiencing are 'normal' for a person with gastroparesis. I myself have been unable to work for over two years because of the symptoms. I used to work twelve and sixteen hour shifts, then the doctor recommended dropping to eight hour shifts, then down to four hour shifts, then he took me off work completely. While I was working I couldn't consume enough calories to replace what I was burning so my weight started dropping really fast, I was always tired, then started blacking out. So it wasn't safe for me to even drive to work. It has put a lot of strain on my family, and my husband struggles between needing to work enough to pay the bills, and needing to be here with me in order to help me through the day.

This is the place to find support. Someone here will be able to help you find a doctor that is understanding to the situation you are in. Best of luck.

:)

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This is us wrapping our arms around you with a big warm cyber hug. You just found out yesterday. It is so completely normal to feel hopeless today. There is hope. There is life with these issues. First as others have said you need to try to find a doctor who treats GP. Focus on trying to feel the best you can by figuring out what your body does and does not tolerate well. Start a food journal recording everything you eat and drink and how much. Try to keep in as much healthy food(drinks) as your body will let you. My pain decreased quite a bit when I went to a liquid diet. My energy increased when i started taking gummy vitamins. Do I have bad days now? Sure, and some terrible days as well. But there are days when I can focus on something besides my body and how it has turned on me. Try to stay positive. Every moment with negative thinking adds stress and makes me feel worse and my body seems to shut down. The more peaceful I am, the better I feel. It sucks that you are so young and have already logged 8 years with this problem. It does not mean the rest of your life is going to be horrible. Challanging for sure. But there is hope. I don't know how long you have been on this site. Coming here taught me more than any doctor about how to live with these issues. Trying suggestions mentioned here is what made the most difference. I hope you can find at least as much helpful information.
We are walking this journey with you.
Nancy

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I completely understand how you are feeling. I have struggled with this since Oct. 2003. I had a nissen fundoplication that went very bad and left me with debilitating issues - severe stomach pain and nausea 24 hrs. a day, 7 days a week. The surgeon caused permanent damage to my digestive tract and vagal nerve that is irreparable. The arrogant surgeon told me to "go doctor shopping until I found someone who would believe my symptoms". I've been to specialists throughout the U.S. The concensus is the surgeon totally ruined my digestive tract and they could not fix it. I have been up and down with depression, had to quit working and go on disability. The many medical complications I've had since 2003 are too long to include in this message. But I do want you to know that there are many of us out here who are what I have termed "throw-away patients". Please hang in there and try to use this site for comfort, advise, and encouragement. We have all walked in your shoes. I strongly advise you to find a good pain management specialist. I won't lie to you...it will be hard to find a good one, but when you do, he/she will help you put together a care plan that will make your life a little easier and help you deal with the pain of GP. I have had to accept that for the rest of my life I will be on morphine and phenergan. Both have significant side-effects but I would rather deal with those than be curled up in the fetal position crying because of the pain and nausea. I didn't want to live under the stigma of depending on narcotics but have finally given in now that I have found a very good pain specialist who is compassionate and spends time with me every month assuring me that I am not a druggie. I am only doing what I have to do to get some quality of life back. He adheres very strictly to FDA regulations and is not a pill pusher. We talk every month about the dose of morphine I am on, whether I can reduce the dose or if I need to increase the dose, and he assures me at this point that this is the best route for me to take. The mechanical digestive damage has been done and it can't be reversed. He is not afraid to say that the surgeon was wrong and is totally responsible for me being in the condition I am. While he can't cure me, he can help me handle the symptoms and makes sure that I do not feel like I am to blame or did anything wrong that got me in this condition. You may have to go to several pain specialists until you find one who will work with you respectfully and compassionately. You deserve at least that much. Don't stop until you find the physician that is good for you. This is a good site and there are wonderfully good and caring people who will share their experiences and tips on what has helped them. We have all used this site to vent our frustrations and our emotional pain. We need to support each other because only we can understand what you are going through. Our families see it and they try very hard to support us and help us, but can never really understand how we feel deep inside because of this condition. So I join in with giving you a big cyber hug and encourage you to reach out to us and when you feel stronger you can help others.

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Hi Britt,

I Googled "motility specialists in Virginia" and several specialty centers came up. I'm not sure what area you are in, so you may want to do a search yourself. Looks like some of the major universities and hospital centers have testing and motility specialists available.

You need to fire your local GI doctor and find a new one. Once you find a motility specialist, you will also need a local GI as part of your team in case something happens when you are at home. They should have good communication with each other as well. My local GI sent me to a major university with a motility specialist as I needed tertiary care. It is 3 hours away, but I need their special equipment, labs, and special medications. They really keep each other in the loop and work as a team. I had to go through a lot of frogs before I found a team who would work for my betterment. Don't give up!

Mare

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Hang in there sweetie, you have started your journey into the future positively by finding this site and getting the support and understanding you need. It has been invaluable to me as I live in a small town in Zimbabwe, Africa where we have very basic medical care and very very little knowledge on gastroparesis. When I need expertise I have to travel to South Africa at a huge cost to my family which has resulted in bankruptcy as we do not have government health insurance or assistance but the advise here has saved me so much both financially and more importantly emotionally. GP is a terrible illness and because you can't see it people tend to think it's in your mind. I assure you it's very real but there is so much that can be done to help ease your symptoms as has been suggested when you find the right pain specialist, keep trying until you find the one that looks after your "heart" and "feelings" too, someone that will be kind to you because you so deserve that for suffering for so long and as for your heartless doctor that has signed you off, you're better off without him. What a shame there are doctors like him practising. I will pray for you because without God I could not have lived with my terrible symptoms over the years. Take care and keep in touch. Big hugs.

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hi, i'm actually opposite you. i live in the US and he told me to try Canada. hmmmm

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It is weird how the medical system works.

Domperidone helps many people, it is available in Canada, yet it is one of the treatment offers that just doesn't work for me.
The gastric pacemaker helps many people, it is not readily available in Canada, and yet I am told it may be my only hope for reducing my chronic debilitating nausea.

With all my experiences dealing with gastroparesis and complications, I have yet to find an understanding or supportive doctor. So don't make any travel plans just yet! But if I do find someone who may be able to help, I will post it to this site. The best support I have received, besides my family, has been through this site, and one of my homecare nurses has been assisting me in my search for treatment. Nothing better than networking to get something accomplished.

I hope that you can find some comfort through all of this.

:)

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What a jerk, you are better off without him. You need to find a motility specialist or at least another GI doctor. There are plenty of options right here in the US no need to go out of the country. I hope you find the answers your looking for. Please don't give up there is hope and help out there.

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i really appreciate the encouragment you guys have given me. its nice to know i'm not the only one out there going through this. for so many years i've felt like an alien with some unheard of medical issue that nobody knew anything about. at least i'm not alone on this. thank you for your supportive words.

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oh, also... right before my doctor pretty much broke up with me, he wrote an Rx for alprazolam and said it "might help".... i'm not depressed. (well, not clinically anyway) Has anyone had any luck with this? I'm thinking i'll drop of the Rx and if its too expensive i'm not even going to bother with it. I've been on antidipressants before and i dont like what they do to me.

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Have you looked online for any of the adaptations that you can do that help? Such as:
- eating baby food
- eating only well-cooked, low-fiber foods
- staying away from high-fat foods, nuts, etc.

What I've had to do is an elimination diet - fast for a day, then just eat rice for a day, then each day add in a new food. See what agrees with you and what doesn't. When you add in food, start with the pureed baby food, just 4-8 oz at a time. Just sip any liquids. Eat 6 small meals a day instead of 3 regular size meals.

I have GP probably as a result of an autoimmune disease I have, and also due to radiation treatment which affected my stomach. I've gotten the most medical help from a Primary Care Physician who is also certified in Integrative Medicine. Go to this website to find an MD with this training:
http://www.holisticmedicine.org/content.asp?pl=64&sl=67&contentid=67
or just holisticmedicine.org and follow the links.

If you see a Holistic MD, they may be able to help figure out if there's an underlying condition which contributes to the GP, and may help you address that.

Definitely get a different doctor than the one you have! It can be frustrating trying to get into a new practice, but ask around, don't give up, and it will be worth it.
Good luck!

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Wow, I cannot believe what an insensitive jerk your doctor is, not to mention completely ignorant. There are a number of excellent medical centers that specialize in motility disorders. Perhaps your doctor has never heard of the Mayo Clinic, Cleveland Clinic, or where I go- Stanford University Medical Center.
You absolutely do NOT have to go out of the country, in fact people come from all over the world to get treated here in the US.
Alpralozam is Xanax, an antianxiety drug. It will help your anxiety but won't do anything for your stomach. One meal a day is the absolute worst thing you can do- what you need to do is eat small, frequent meals. I eat at least six or seven times a day, never more than my closed fist, and also sometimes only liquids if I am not feeling well.
There are many things you can do to help your motility, but first you need to see a real motility specialist so you can find out exactly what your problem is. Gastroparesis and motility problems can affect you from your esophagus all the way to your behind, so it's good to know where your issues are. You might be surprised as I was to find that although my issues were horrible nausea and vomiting episodes that sent me to the ER, my problem is actually small bowel and colon, not stomach.
Have you tried prokinetic drugs like Reglan (which many people hate: I took it five days and that was enough for me) or domperidone (which is what I have been taking now for a year, and it has made a huge difference). I also take a low-dosage tricyclic every night- 50 mg of desipramine. Another similar drug many people are on is remeron. They both work to control nausea and help with pain and sleep. If I feel like I am going to have a break-through episode, I hit it very hard as soon as I start feeling bad with 8 mg of zofran and either 1 or 2 mg of ativan, taken together. This is the anti-nausea cocktail recommended by the cyclic vomiting website and it works for me. I had tried everything else- zofran alone, xanax alone, xanax and zofran, compazine, and phenergren, and none of them worked. It is the combination of zofran and ativan that really does it for me.
You need to play with your diet and see what you can and can't tolerate, and you do this by keeping a food journal and looking for patterns. keep in mind with motility problems, you may not see the result of eating a food for several days, so make sure to keep track. I have found that I can't eat gluten, corn, beef, nuts, citrus, dairy, and fibrous or gassy veggies. This is very individual- you have to figure out your own. In general you want to avoid high-fiber foods and anything that is hard to digest, like fatty or rich foods.

I'm sorry that you had such a horrible experience with your doctor and it's too bad he didn't do what my doctor did. After doing every test he could think of and having them all come back normal, he sent me for a second opinion to a major medical center. Good luck, and don't loose hope. You are only starting at the beginning of your journey here, there are a lot of things you can do to help yourself feel better.

Keep us posted.
Wendy

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Wow, I cannot believe what an insensitive jerk your doctor is, not to mention completely ignorant. There are a number of excellent medical centers that specialize in motility disorders. Perhaps your doctor has never heard of the Mayo Clinic, Cleveland Clinic, or where I go- Stanford University Medical Center.
You absolutely do NOT have to go out of the country, in fact people come from all over the world to get treated here in the US.
Alpralozam is Xanax, an antianxiety drug. It will help your anxiety but won't do anything for your stomach. One meal a day is the absolute worst thing you can do- what you need to do is eat small, frequent meals. I eat at least six or seven times a day, never more than my closed fist, and also sometimes only liquids if I am not feeling well.
There are many things you can do to help your motility, but first you need to see a real motility specialist so you can find out exactly what your problem is. Gastroparesis and motility problems can affect you from your esophagus all the way to your behind, so it's good to know where your issues are. You might be surprised as I was to find that although my issues were horrible nausea and vomiting episodes that sent me to the ER, my problem is actually small bowel and colon, not stomach.
Have you tried prokinetic drugs like Reglan (which many people hate: I took it five days and that was enough for me) or domperidone (which is what I have been taking now for a year, and it has made a huge difference). I also take a low-dosage tricyclic every night- 50 mg of desipramine. Another similar drug many people are on is remeron. They both work to control nausea and help with pain and sleep. If I feel like I am going to have a break-through episode, I hit it very hard as soon as I start feeling bad with 8 mg of zofran and either 1 or 2 mg of ativan, taken together. This is the anti-nausea cocktail recommended by the cyclic vomiting website and it works for me. I had tried everything else- zofran alone, xanax alone, xanax and zofran, compazine, and phenergren, and none of them worked. It is the combination of zofran and ativan that really does it for me.
You need to play with your diet and see what you can and can't tolerate, and you do this by keeping a food journal and looking for patterns. keep in mind with motility problems, you may not see the result of eating a food for several days, so make sure to keep track. I have found that I can't eat gluten, corn, beef, nuts, citrus, dairy, and fibrous or gassy veggies. This is very individual- you have to figure out your own. In general you want to avoid high-fiber foods and anything that is hard to digest, like fatty or rich foods.

I'm sorry that you had such a horrible experience with your doctor and it's too bad he didn't do what my doctor did. After doing every test he could think of and having them all come back normal, he sent me for a second opinion to a major medical center. Good luck, and don't loose hope. You are only starting at the beginning of your journey here, there are a lot of things you can do to help yourself feel better.

Keep us posted.
Wendy

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i'm going to talk to my PCP and see if they'll help me find a motility specialist. that sounds like a good idea. i didnt even know those kinds of doctors existed, i thought there was just the GP and that was it.

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It is a true tragedy that your doctor has treated you so badly. As others have said, there are many good doctors that have a variety of tools to manage GP. A website with another wealth of information is http://livingwithgastroparesis.com/ Crystal is both a GP patient and a certified health counselor. She has a number of videos available for free on youtube.com that talk about different aspects of GP and gives you things you might want to discuss with your new doctor. Just search under csaltrelli. Best of luck finding the care you need. There are lots of folks with lots of knowledge here. Good luck on your journey!

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iv also had gp for more then 8years my oncologist just told me he thinks i may have had it since i was a kid! im 31 now,my g.i doc has told me that i cant be helped by meds just bipass ,pacemaker,sleve he wasnt sure.well i talked to two surgons both said the pacemakers a waste! its experamental and helps less then30% of people.my doc wants to remove 95% of my stomache and due a eune y.thats attach my intestine to my stomach and another part to my liver.he promised that itd help me so much more then any other surgrey or meds that just dont work.i just was throwing up so bad there was large blood clots in it.i was told in the e.r well we can give you iv fluids and pain meds plus zofran to stop the throwing up.sent me home but told me feel free to pop in anytime your having these episodes! i have so many other issues not just gp but your not alone i often get that feeling of hoplessness no matter what anyone says you still feel like crap right? thats why im on here others understand here.

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I actually stand up to this doctor. Some doctors will keep stringing their patients along without helping them. I give him credit that he knew was able to be direct. I hope you now can find help and start healing.

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It's one thing to be direct, horrible to not at least spend five minutes doing a little research for your patient so you can give them good advice. My doctor did every test on the books and couldn't find anything wrong and yet I still kept ending up in the ER with uncontrollable vomiting episodes. Finally, instead of saying "I can't find it so there's nothing wrong", he sent me to a major medical center for a second opinion. The motility specialist there nailed it on the first visit.
I went back and told my regular doctor and it was something he had not thought of, since motility disorders, especially small bowel, are pretty rare. He's an excellent doctor and I give him credit for saying, "I can't figure it out, but I'll send you somewhere where hopefully they can". I think it takes a lot of confidence and a real lack of ego for a doctor to do that and I am really thankful that he did. I still see him as well as my motility specialist, and make sure they send reports to each other.

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