Gastrectomy for Gastroparesis

I was diagnosed in feb of 2011 and doctors are saying my last resort is the stomach removal has anyone done this? If so did it help with nausea? And did it give you the ability to eat again? And how long did it take for the doctors to remove the feeding tube? if ever.

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I have not had this but have heard of nothing but horror stories. This girl who had it is even sicker and cannot eat or work and she is worse then she was prior to surgery. I would advise against it. I know for me I dont care how sick I get I would never consider that as an option. I already.dont have a gallbladder or common bile duct. They did a huge surgery in 2010 to save my life bc I had choledochal cysts and without surgery they said I wouldnt survive past a year. That was a no brainer for me. It was the most aweful recovery ever tho. I have a 12 inch scar across my upper tummy. I still feel pain all on my right side where they removed the cbd and rerouted my intestines and I developed gp and cipo from the surgery. I know for me I dont care how sick I get I will never have anymore abdomimal surgery. I hope you find the answers you are looking for and maybe get a second opinion.

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Thanks so much for the info, the horror stories you heard did these people have diabetic or idiopathic gastroparesis because I hear that makes a difference. And these people have you talked to them personally because the professionals and everyday people say the internet is the worse place to look for information on anything. I'm yet to find a real person to talk to. And I hear people who are doing well are too busy living their lives instead of posting stories. That's all you read on the internet is horror stories nothing positive and because of this you can't help but to believe what they are saying about the internet is true.

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This girl had idiopathic and I met her at mayo clinic in arizona when I was doing testing. She said her dr in a small town said that was the only way she would have a normal life and they convinced her right after she was diagnosed. My motility at mayo said to many drs want to do to many invasive things before trying other forms of treatment. I had it pretty badly gp and cipo and have turned mine around drastically with b12 injections (bc im way to low) emergen c's, gummy vit, magnesium citrate, and swiss kriss (an herbal laxitive I take a few times a week), digestive enzymes, and nutrition. My dr is amazed at how well I am doing compared to a few months ago when they were sure I would have to do tpn. I know there are a lot of quacks on the internet and you cant beleive their stories and often they have more underlying problems or dont mention they were doing things wrong to get there. My motility dr said no eatting what im not suppose to or I will end up in the hospital. She is right, since meeting with nutrition I have not had to make a trip to the er. Last I went was jan 1, a great way to ring in 2012 and was going every few weeks but I have been able to avoid it. So yea this was one case I met in person and my heart went out to her, shes still tube fed and surgery was in 09'. I hope you find the right answers and I will keep you in my thoughts and prayers. Is yours idiopathic or diabetes related? And I agree with you 100% about random internet stories : ) Hang in there and keep me posted on what they end up doing. I know I dont know you but I am here if you need to talk. I wish you the best and a speedy recovery if they do surgery!

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Once again thanks for the info I have idiopathic also and I'm tube fed also I'm so happy that you are able to eat I'm unable to eat at all due to the nausea the doctors said my b12s were fine and what do you take the emergen c's for? and do they bother your stomach at all? does the digestive enzymes help with the stomach? or just the bowels? I've heard that the magnesium helps how long have you been on the magnesium? and have you heard of the chinese digestive herbs? I tried to get an appt at the mayo clinic in minn. but they turned me down for an appt stating there was no other treatment that they could offer me. I have the gastric pacemaker also. So it gets really frustrating to go from a healthy individual and out of the bed all day everyday to someone who is constantly in the bed with 3 kids a husband and a puppy that I barely got to know. I just keep praying to god because he is the ultimate healer.

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I HAD IT DONE BUT I'M STILL NAUSEATED 24/7, AND I AM ON BOTH TPN AND A J TUBE.
I HAVE HEARD A FEW SUCCESS STORIES.
MINE IS IDIOPATHIC.

I WOULD MAKE SURE YOUR GP IS LIMITED TO YOUR STOMACH. THAT'S ONE REASON IT MIGHT NOT HAVE HELPED BECAUSE MY ENTIRE GI TRACT IS OUT OF ORDER.

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I had my stomach removed 2years ago and have not eaten since. After the surgery i devolopeda section of intestine that moves backwords. I am on tpn and getting ready to try my secondj-tube. I hope everything works out for you, but for my thr results were not what we were hoping for. I am constantly vomiting and cannot do anything that i used to be able to do, i would defintly research all options.

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I have been on mag for a few months now. I take two emergen cs a day bc its powder vitamins since I dont digest solids. It does not effect my stomach. The digestive enzymes help me with everything. I have not heard of chinese digestive herbs but it sounds interesting. That is crappy.that mayo turned you away. They would not do that here. Since I have everything mostly controlled we are not doing anything right now. If I get sick again they are doing botox in my pyloris. We also found out my muscles are fine that its from vagus nerve damage from the surgery and.the nerve can regenerate itself. My dr said I will always have gp and cipo but I have a chance of contolling it since its not my muscles. She couldnt guarentee control but is hopeful and I dont have to see her unless I get sick again. My body has been thru such hell I still dont feel super great yet. And I have had a damn cold turned flu yesterday for a few weeks. I thought I was getting sick again but I have a high fever and body aches with vomitting so im hoping its a flu and it goes away soon.

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Oh boy I hope you feel better really soon, that is the first time that I've ever heard a doctor say that the vagus nerve can regenerate itself the doctors here say that once it's destroyed or stops working it will never work again so that is promising news, what can you eat? are you just on a liquid diet? because the gastroparesis diet they give you here will kill you. It's so hard for me to eat anything when I eat 3 club crackers I begin to burp and I get a little nauseated to I immediately put the crackers away so I am so confused because if you can't eat a little cracker what can you eat?

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I am truly sorry to hear that, did they give you a smart pill study before they did the surgery? how did they finally find out it was your whole gi tract? what test did they do for that? and do you believe it may have worked for you if it was just your stomach? Unfortunately the GI tract is so difficult to understand and these doctors won't be honest enough to tell the patient they don't know instead of telling lies, I think if they do that It would save the patient and the doctor alot of misery.

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I eat very bland. Right now I havent eaten in 3 days. I think it is a flare up. I am also beginning to think I need a second opinion bc my dr now isnt doing anything for me. She tells me not to puke bc it will ruin my teeth. How am I suppose to hold it in, I cant help it when puke just comes out. I had a really good two weeks until a few days ago. Now I am beyond frustrated and upset. I am tired of my mom coming to my house and telling me I need to deal with it and let it pass. My boyfriend is super supportive but gets mad at me when I am tired and I want to give up. I told him and my mom they have no right to tell me what to do when they havent been sick for two years straight or had repeat hospitalizations. I am really frustrated right now and I know I should go get fluids but im tired of er drs looking at me like im crazy. I hate this lifestyle. It isnt fair that we have to be so miserable all the time. And just when u think u r catching a break u get sick again. Sorry to vent and be a downer I am just tired of this stupid disorder!

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I totally understand are you able to try a pacemaker? if you can it's worth a try, try not to listen to others because as you said they are not going through it, hang in there and pray and as they said maybe your nerve will start to work for you, but do what you can to get you through don't worry about others because it will make you more depressed because they can do the things they want to do and eat the way they want to eat, I'm so glad that you are able to put something in your mouth some of the time, go get another doctor if you feel it may help you, because the doctors can also go home and have a normal life while your at home suffering so try and get as much help and opinions as you can I'm will to travel to the moon to help myself. So hang in there and always remember god is the ultimate healer.

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Thanks. I am at the er getting fluids due to severe dehydration, the er dr said I need a gastric pacemaker. Now its just finding a dr. He said I need to go back to mayo but I know my dr there wont do anything. She is a motility dr who is against medication and treatment. Just waiting on ct scan results, they want to make sure I dont have a real obstruction. He said with my cipo its common to get an obstruction.

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I'm definately praying for you, If you are looking for a doctor the doctors at the mayo clinic in minn. definately does the pacemakers and if you can't find a doctor there the doctors at the cleveland clinic will give you one that is where I got mine if you want to give them a call for more info the # is 1-800-223-2273 or the web is ccf.org and of course you have to go to the digestive disease dept first and they will refer you over to the surgery department to get it done. If you need more info let me know I hope you feel better real soon.

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I had my pacer placed in Nov. 2010 at Hartford Hospital in Connecticut. It took almost a year to get the setting to where it was effective, but now, in conjunction with erythromycin, I am able to eat small meals and liquids.

The surgeon said that he has seen success with Roux-en-Y gastric bypass for gastroparesis in diabetic patients, but not idiopathic patients. Hartford Hospital won't allow Roux-en-Y on individuals with a BMI less than 30, and since most of us idiopathic patients are no where near there, my surgeon has not performed gastric bypass on a "normal" weight individual. He thinks it would work - I have my doubts. From what I've read (and from what I've experienced myself) most idiopathic patients intestines are involved (as well as having GP.) Not sure gastrectomy or bypass would work very well when the patients intestines are involved. That's just my opinion.

I would definitely recommend the gastric electrical stimulator. It is NOT a cure - so do not go into it thinking you will be all better. Sadly, there is no cure for us. However, it can improve your quality of life. I still have to take Zofran, Phenergan, Nexium, Zantac and erythromycin daily. Like I stated earlier, I can eat small meals and liquids now, which is a huge improvement (mine is set at the maximum setting, so my battery life isn't very good.)

Best of luck to you!

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Thank you for the kind words. They wanted to admit me but gave me the option. I came home bc I hate hospitalizations. I am in arizona so my family would have to help get me to a different state since I am not working. I do have family in cleveland who offered me to stay with them should I go there. Mayo got me an emergency appoitment tmrw with the motility nurse practitioner since my doctor is on hospital rounds at a.different location this week. I am going to ask about the pacemaker and see there thoughts. I know it doesnt cure but if I can get some relief it would be worth it. My bmi is way below 30 I know that much. I lost 15 lbs since becoming sick again saturday. My brother's gf does neuro research and thinks the pace maker would be worth it for me. Do you have to be at a certain stage to get it? They have tried reglan but I had horrible neurological effects from it. They have not tried any other meds. I do alternate between zofran and phenegran. They work ok but not super great as I still am vomitting and major diarrhea. I hope to get better feedback tmrw. I had a few weeks of feeling good and this was the longest period between the aweful attacks. I would do anything to be able to be attack free for longer periods of time. I wish there was a cure for us. It helps me alot being on this site and talking to others who understand the hell gp and cipo causes. I am staying positive tho. I hope you all are having good days. My thoughts and prayers go out to all of us battling to get our lives back. I really want to be well enough for radioloy tech school in august which lasts two years. I want so desperately to have my life back and want all of the gp and cipo sufferers to have their life back too. Stay strong and keep fighting!

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I'm not sure what the guidelines are for getting the pacer. I had been diagnosed a severe for 6 years, and had already tried Reglan (bad neurological side effects), Domperidone (prolactin level spiked), BOTOX injection into my pyloric valve (worked for a while, but then lost efficacy.) I tried erythromycin by itself, but it didn't work alone. I also tried erythromycin in combination with BOTOX - that didn't work. Before it was pulled off the market I was on propulsid - worked GREAT! And Zelnorm - worked so great, it was the best I ever felt - was actually "normal" when I as on that. Sadly, the FDA pulled both propulsid and zelnorm ): I wish they would let doctors decide - I had NO cardiac side effects with either med...

Anyway, sorry to get long winded - just letting you know what I tried before getting the pacer. In the months preceding the pacer, I was in and out of the ER weekly for dehydration and my weight was falling drastically. My doctor wanted to place a j-tube, but sent me for the consultation for the pacer first. Dr. Papasavas (the bariatric surgeon who placed my pacer) was able to get me in immediately, and get my surgery scheduled for a week later (wow - fast!)

To this day, I am still feeding tube free (:

I will warn you - the pacer can be painful. Because mine is on the maximum setting, I get little shocks every once in a while (usually positional.) Also, I'm kinda small (at least that's what everyone tells me - I don't think that I am particularly little, I'm 5'5") so my pacer battery bumps my rib and slides under it once in a while - so my ribs on that side are always sore (you get used to it.) I cannot sleep on my stomach at all anymore because it hurts. I also cannot do sit-up anymore because it pulls on where the pacer is attached. However, even with all this, I would DEFINITELY get one again. It really improved my quality of life.

Hope you're having a good tummy day today (:

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I also have the pacemaker only had it since may of 2011 and still on the tube feed still have nausea reguardless if I eat or not very week very frustrated sitting here with 3 children I am unable to interact with. have you ever tried or know anyone who has tried chinese herbs? and if so did it work for them? I've tried all meds from reglan to erythromycin dranabinol zofran phenegran etc nothing worked. Has anyone in your area had any good results from the bypass since the doctor says that it may work because the doctors are saying thats my last resort but of course they are going to do the smart pill study to make sure it's not the whole GI tract. Any feedback would be helpful

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stillhungry4- how many adjustments to your pacer have you had? It took close to a year (which was about 6 adjustments) to get my setting to where it had any efficacy - it is now set up to maximum voltage and is one for 1 second and off for 2 seconds at a time (I may have reversed the seconds, I can't remember if it is one for 1 and off for 2 or one for 2 and off for 1.)

I have a good friend who studied chinese medicine. She suggested ginger for the nausea. I find it works best as unfiltered ginger ale (which can be found at a nature food store.) Or ginger tea (pure ginger root, not the flavored stuff from the regular grocery store - the pure stuff can also be found at a nature food store.) I've found that the pill form does nothing. You can also brew your own ginger tea from ginger root.

Also. capsaicin (this stuff that makes hot peppers hot) is supposed to aide with digestion. I find if I eat spicy food, I do hear digestion happening (which is fun cause it happens so rarely! LOL) I have never tried capsaicin paste or pills (kinda scared to because I have such bad acid reflux from the gp.)

I have also read that the spice marjoram aides in digestion. I started adding it to mashed potatoes and other mushy food that I can eat- doesn't add much flavor, but also not sure if it is doing anything.

The surgeon who placed my pacer at Hartford Hospital did tell me that he has had a few patients with gp (they were obese and had type 2 diabetes) who were "cured" by bypass. That being said, he has never done the surgery on a "normal" weight individual. I have heard both good results from fellow gpers and horror stories.

Sorry that you are going through such a rough patch. I do hope that your symptoms ease up soon so that you can spend quality time with your children. Even quiet time reading or watching a movie can be good quality time, so don't get too down on yourself. I'm sure they love you dearly. ((hugs))

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I've had four adjustments to the pacemaker I'm only on 8 now the doctor does not make any adjustments accept for turning it up and sending me home. He talks about nothing else I hear there is other things you can do with the pacemaker than just turning it up and sending the patient home. Do you get nauseated even when you don't eat with the pacemaker? And it sounds like you have a good variety of foods you can eat which is excellent, another lady that I know with the pacer she says she stays nauseated all the time and them when she eats she has to go take her phenegran and go to bed I told her that is still no life she goes to eat with her husband and they have to always cut dinner short because she gets sick etc this is a very hard life to live. Do you go to family functions and eat with them and still be able to sit at the table and talk? I just wonder with the pacer is there anyone who is living some normalcy? And were you ever on tube feeds and if so what did you do to get yourself off? What foods did you start off with because everytime I eat something I get sick and I really don't eat or attemp to eat anything for days I try to eat a few crackers and I begin to burp and feel nauseated to I stop that and I try to chew or suck on a piece of candy and that blows over well for a moment and doesnt give me that much grief but they tell you to stay away from candy on the gp diet which the gp diet at the cleveland clinic will kill you because it's not patient specific and to me it's geared toward diabetics who can consume something. Just not sure where to turn at this point.

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I'm praying for you did you decide on your next move? Hope you are home from hospital hang in there talk to you soon.

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