@citygirlannie Have you seen a good GI Doctor who gave you a series of tests to see how bad a case of gastroparesis you have... What happened to your body weight since that botched surgery..?
Hi. I have a great doctor at Yale medical center. My stomach empty test took 5 hours and I only rated a 3 out of 100. She added slow Dumping syndrome to my gastropareisis. I'm very thin but my stomach looks like I am expecting. I can't drink and eat at the same time. After I eat anything I have to wait 20 minutes before I can drink. I may need a pace maker to get my stomach to digest food.
I too have trouble drinking at the same time as eating...but I do have to cut things really small and get some kind of sauce to help giving the food in the stomach to slip around on...and move on to the intestinal network.. gravity has to play a role..
Drinking and eating at the same time is definitely a problem and slow and steady seems to be the best pace. If you (citygirlannie) are looking into a pacemaker for your stomach, given my experience, I very much advise you to also ask about surgical alteration of our pylorus (valve or sphincter between your stomach and small intestine). In reading everyone's posts, my thinking is leaning toward the premise that both (stomach pacemaker and pyloromyotomy) is the best solution. What I mean by solution is improved ability to eat and drink without the consequences of dumping and/or bloating and fullness. I think we are all aware there is no solution to the dilemma of gastroparesis. I am not super familiar with the stomach pacemaker. I think though, if I had to choose, I would choose to have the surgical alteration of my pylorus. Call me old fashioned, but I am a little leery of foreign substances or products (pacemakers) being placed in my body. The pyloromyotomy I had simply changes how my pylorus opens and closes and allows my stomach to open of its own volition. With that said, a pyloromyotomy is not a perfect solution. The correct mix of stomach acids is not in place due to lack of communication to my pancreas (vagus nerve injury), my stomach does not contract and mix the foods I eat because it does not get that message (vagus nerve injury) and my pylorus opens and closes sporadically instead of based upon communication signals from my nervous system (vagus nerve injury). I am living testimony, however, to the HUGE improvement in stomach emptying following my pyloromyotomy surgery. The Mayo surgeon (Rochester) also cut notches in my diaphragm muscle on both the right and the left sides to improve my ability to swallow. Many folks in this group talk about difficulty swallowing. My esophagus has zero/no contractile ability; my esophagus does not contract to move the food and liquids I swallow downward and toward my stomach. Gravity is the only force moving things I swallow downward and toward my stomach. As has been indicated by others, gravity is really good at keeping our feet on the ground, but not so good at moving food (and sometimes even liquid) from the throat to stomach. I firmly believe both these surgically procedures are what have kept me alive. I recommend anyone with gastroparesis due to vagus nerve injury talk with their physician's about both the pyloromyotomy or pyloroplasty and the Heller Maneuver. I hope this information and my experiences are a help to someone.
Drinking and eating at the same time is definitely a problem and slow and steady seems to be the best pace. If you (citygirlannie) are looking into a pacemaker for your stomach, given my experience, I very much advise you to also ask about surgical alteration of our pylorus (valve or sphincter between your stomach and small intestine). In reading everyone's posts, my thinking is leaning toward the premise that both (stomach pacemaker and pyloromyotomy) is the best solution. What I mean by solution is improved ability to eat and drink without the consequences of dumping and/or bloating and fullness. I think we are all aware there is no solution to the dilemma of gastroparesis. I am not super familiar with the stomach pacemaker. I think though, if I had to choose, I would choose to have the surgical alteration of my pylorus. Call me old fashioned, but I am a little leery of foreign substances or products (pacemakers) being placed in my body. The pyloromyotomy I had simply changes how my pylorus opens and closes and allows my stomach to open of its own volition. With that said, a pyloromyotomy is not a perfect solution. The correct mix of stomach acids is not in place due to lack of communication to my pancreas (vagus nerve injury), my stomach does not contract and mix the foods I eat because it does not get that message (vagus nerve injury) and my pylorus opens and closes sporadically instead of based upon communication signals from my nervous system (vagus nerve injury). I am living testimony, however, to the HUGE improvement in stomach emptying following my pyloromyotomy surgery. The Mayo surgeon (Rochester) also cut notches in my diaphragm muscle on both the right and the left sides to improve my ability to swallow. Many folks in this group talk about difficulty swallowing. My esophagus has zero/no contractile ability; my esophagus does not contract to move the food and liquids I swallow downward and toward my stomach. Gravity is the only force moving things I swallow downward and toward my stomach. As has been indicated by others, gravity is really good at keeping our feet on the ground, but not so good at moving food (and sometimes even liquid) from the throat to stomach. I firmly believe both these surgically procedures are what have kept me alive. I recommend anyone with gastroparesis due to vagus nerve injury talk with their physician's about both the pyloromyotomy or pyloroplasty and the Heller Maneuver. I hope this information and my experiences are a help to someone.
@rossjt i am sure your last 2 posts will help some of the people on here who have severe gastroparesis. Thank you for posting that information! I had never heard of the pylorus before I read your posts!
There’s a mom on another Gastroparesis thread who is very worried about her daughter who has a severe case. I hope she sees your posts — it could be an option for her daughter.
Drinking and eating at the same time is definitely a problem and slow and steady seems to be the best pace. If you (citygirlannie) are looking into a pacemaker for your stomach, given my experience, I very much advise you to also ask about surgical alteration of our pylorus (valve or sphincter between your stomach and small intestine). In reading everyone's posts, my thinking is leaning toward the premise that both (stomach pacemaker and pyloromyotomy) is the best solution. What I mean by solution is improved ability to eat and drink without the consequences of dumping and/or bloating and fullness. I think we are all aware there is no solution to the dilemma of gastroparesis. I am not super familiar with the stomach pacemaker. I think though, if I had to choose, I would choose to have the surgical alteration of my pylorus. Call me old fashioned, but I am a little leery of foreign substances or products (pacemakers) being placed in my body. The pyloromyotomy I had simply changes how my pylorus opens and closes and allows my stomach to open of its own volition. With that said, a pyloromyotomy is not a perfect solution. The correct mix of stomach acids is not in place due to lack of communication to my pancreas (vagus nerve injury), my stomach does not contract and mix the foods I eat because it does not get that message (vagus nerve injury) and my pylorus opens and closes sporadically instead of based upon communication signals from my nervous system (vagus nerve injury). I am living testimony, however, to the HUGE improvement in stomach emptying following my pyloromyotomy surgery. The Mayo surgeon (Rochester) also cut notches in my diaphragm muscle on both the right and the left sides to improve my ability to swallow. Many folks in this group talk about difficulty swallowing. My esophagus has zero/no contractile ability; my esophagus does not contract to move the food and liquids I swallow downward and toward my stomach. Gravity is the only force moving things I swallow downward and toward my stomach. As has been indicated by others, gravity is really good at keeping our feet on the ground, but not so good at moving food (and sometimes even liquid) from the throat to stomach. I firmly believe both these surgically procedures are what have kept me alive. I recommend anyone with gastroparesis due to vagus nerve injury talk with their physician's about both the pyloromyotomy or pyloroplasty and the Heller Maneuver. I hope this information and my experiences are a help to someone.
@rossjt I like hearing of your progress. Rarely is there a perfect solution for anything. .. but can sometimes come close.
I reread the Mayo Clinic's article on gastroparesis yesterday. https://www.mayoclinic.org/diseases-conditions/gastroparesis/diagnosis-treatment/drc-20355792 . The treatment section is a bit more interesting than the last time I read it. Now there is a section entitled “ Treatments under investigation”. They are doing drug studies and one is Relamorelin that seems promising. They mention the endoscopic pyloromyotomy that you had. Another procedure is placing a small tube (stent) where the stomach connects to the small intestine (duodenum) to keep this connection open. They also mention gastric electrical stimulation which they say is getting better results with those with diabetes.
It pleases me to read of such progress.. even if it is in trials still. Back when I was diagnosed with it there were two meds and the one that worked for me .. propulsid .. was taken off the market and my family doctor advised me not to take the other... reglan.
I had to have a gastric by-pass to fix a paraesophgeal hernia. My stomach auto empties directly into my small intestines now. I have achalasia which is the sphincter going into the stomach not opening. It developed before this surgery, but has worsened. I have no motility of my esophagus and also have Barrett's esophagus. Years of acid has done its damage.
Thank you for sharing your knowledge here to help others.
Was diagnosed w/ gastroparesis a month ago. Despite altering my eating habits and meds, trying to get strength (and weight) back has been difficult. Suggestions welcome to combat this. (trying to get back to at least 140-150lbs. Lost almost 30lbs. this past year alone. Need to get some padding back on. All other tests (endo, colonoscopy) came up negative.
Hi @gegrafton, You have lost 30 lbs. with your gastroparesis, that is definitely a big change for one year. I am sorry you are battling with what and how to eat to maintain weight. You will notice that I moved your inquiry about suggestions that will help combat the weight loss to an ongoing discussion about how/why/ what to eat and other options for people living with gastroparesis. I highly recommend scrolling back through the multiple pages of advice, experiences and suggestions others have offered.
I also wanted to invite @rossjt back to the conversation, as well as @ken82 and @macombs who may have some helpful advice.
@gegrafton, have you considered any surgical options at this point?
@gegrafton My gastroparesis was the result of a botched surgery that injured those hairnet like nerves that control stomach emptying.. I lost 50 pounds in 2 months.. I have gained back 30 of those pounds in the last 4 and a half years.. But diet is such an individual thing .. Over these last years I find my self falling into a rut of eating whatever works ...and I keep down.. and I have to be so careful as not to fill up the stomach even though what I eat now is just a fraction of what I have eaten in the pre gastroparesis era.. I cook for my self.. I go to a Co-op Deli for a change... but the process of eating is what is really important to me.. small amounts ... very often ... eat something every time you are in the kitchen.. I have Ice Cream and Strawberry topping twice a day.. I have a jar of a trail mix I make up with Costco Mixed Nuts, Dried Apricots, Dried Craisins and Peanut M&Ms.. I eat a lot of fruit.. I make a chicken stew.. or Chili that is like a stew.. gravy making everything go down easy.. cutting up everything tiny... so the stomach does not have so much work to digest... Chew until it is ridiculous ..
Mayo MN gave me a way to cope.. I take a generic Nexium type pill each morning.. I do drink coffee .. like every Norwegian.. I take a Mirtazapine anti-depressant ... that the Mayo GI Doc said would help me want to eat more.. You have to eat to live.. so these first months keep a food diary... in the kitchen and in the bathroom... write done what you eat.. and date it... Write down what happens after you eat... and date it.. figure out what works.. Look back at the past posts.. Holiday time is a good time to gain weight... I had some great cookies... some great toffee... 1 piece at a time..
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Hi. I have a great doctor at Yale medical center. My stomach empty test took 5 hours and I only rated a 3 out of 100. She added slow Dumping syndrome to my gastropareisis. I'm very thin but my stomach looks like I am expecting. I can't drink and eat at the same time. After I eat anything I have to wait 20 minutes before I can drink. I may need a pace maker to get my stomach to digest food.
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1 ReactionI too have trouble drinking at the same time as eating...but I do have to cut things really small and get some kind of sauce to help giving the food in the stomach to slip around on...and move on to the intestinal network.. gravity has to play a role..
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1 ReactionDrinking and eating at the same time is definitely a problem and slow and steady seems to be the best pace. If you (citygirlannie) are looking into a pacemaker for your stomach, given my experience, I very much advise you to also ask about surgical alteration of our pylorus (valve or sphincter between your stomach and small intestine). In reading everyone's posts, my thinking is leaning toward the premise that both (stomach pacemaker and pyloromyotomy) is the best solution. What I mean by solution is improved ability to eat and drink without the consequences of dumping and/or bloating and fullness. I think we are all aware there is no solution to the dilemma of gastroparesis. I am not super familiar with the stomach pacemaker. I think though, if I had to choose, I would choose to have the surgical alteration of my pylorus. Call me old fashioned, but I am a little leery of foreign substances or products (pacemakers) being placed in my body. The pyloromyotomy I had simply changes how my pylorus opens and closes and allows my stomach to open of its own volition. With that said, a pyloromyotomy is not a perfect solution. The correct mix of stomach acids is not in place due to lack of communication to my pancreas (vagus nerve injury), my stomach does not contract and mix the foods I eat because it does not get that message (vagus nerve injury) and my pylorus opens and closes sporadically instead of based upon communication signals from my nervous system (vagus nerve injury). I am living testimony, however, to the HUGE improvement in stomach emptying following my pyloromyotomy surgery. The Mayo surgeon (Rochester) also cut notches in my diaphragm muscle on both the right and the left sides to improve my ability to swallow. Many folks in this group talk about difficulty swallowing. My esophagus has zero/no contractile ability; my esophagus does not contract to move the food and liquids I swallow downward and toward my stomach. Gravity is the only force moving things I swallow downward and toward my stomach. As has been indicated by others, gravity is really good at keeping our feet on the ground, but not so good at moving food (and sometimes even liquid) from the throat to stomach. I firmly believe both these surgically procedures are what have kept me alive. I recommend anyone with gastroparesis due to vagus nerve injury talk with their physician's about both the pyloromyotomy or pyloroplasty and the Heller Maneuver. I hope this information and my experiences are a help to someone.
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2 ReactionsThank you for the info. I also have vagus nerve damage from surgery. I will call my doctor tomorrow.
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1 Reaction@rossjt i am sure your last 2 posts will help some of the people on here who have severe gastroparesis. Thank you for posting that information! I had never heard of the pylorus before I read your posts!
There’s a mom on another Gastroparesis thread who is very worried about her daughter who has a severe case. I hope she sees your posts — it could be an option for her daughter.
@rossjt I like hearing of your progress. Rarely is there a perfect solution for anything. .. but can sometimes come close.
I reread the Mayo Clinic's article on gastroparesis yesterday. https://www.mayoclinic.org/diseases-conditions/gastroparesis/diagnosis-treatment/drc-20355792 . The treatment section is a bit more interesting than the last time I read it. Now there is a section entitled “ Treatments under investigation”. They are doing drug studies and one is Relamorelin that seems promising. They mention the endoscopic pyloromyotomy that you had. Another procedure is placing a small tube (stent) where the stomach connects to the small intestine (duodenum) to keep this connection open. They also mention gastric electrical stimulation which they say is getting better results with those with diabetes.
It pleases me to read of such progress.. even if it is in trials still. Back when I was diagnosed with it there were two meds and the one that worked for me .. propulsid .. was taken off the market and my family doctor advised me not to take the other... reglan.
I had to have a gastric by-pass to fix a paraesophgeal hernia. My stomach auto empties directly into my small intestines now. I have achalasia which is the sphincter going into the stomach not opening. It developed before this surgery, but has worsened. I have no motility of my esophagus and also have Barrett's esophagus. Years of acid has done its damage.
Thank you for sharing your knowledge here to help others.
ZeeGee
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2 ReactionsWas diagnosed w/ gastroparesis a month ago. Despite altering my eating habits and meds, trying to get strength (and weight) back has been difficult. Suggestions welcome to combat this. (trying to get back to at least 140-150lbs. Lost almost 30lbs. this past year alone. Need to get some padding back on. All other tests (endo, colonoscopy) came up negative.
-
Like -
Helpful -
Hug
1 ReactionHi @gegrafton, You have lost 30 lbs. with your gastroparesis, that is definitely a big change for one year. I am sorry you are battling with what and how to eat to maintain weight. You will notice that I moved your inquiry about suggestions that will help combat the weight loss to an ongoing discussion about how/why/ what to eat and other options for people living with gastroparesis. I highly recommend scrolling back through the multiple pages of advice, experiences and suggestions others have offered.
I also wanted to invite @rossjt back to the conversation, as well as @ken82 and @macombs who may have some helpful advice.
@gegrafton, have you considered any surgical options at this point?
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1 ReactionTo gain weight I drink 11/2 bottles of Boost Plus,Choclate and Ice Cream every day. Instead of three meals per day I have 5 meals
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1 Reaction@gegrafton My gastroparesis was the result of a botched surgery that injured those hairnet like nerves that control stomach emptying.. I lost 50 pounds in 2 months.. I have gained back 30 of those pounds in the last 4 and a half years.. But diet is such an individual thing .. Over these last years I find my self falling into a rut of eating whatever works ...and I keep down.. and I have to be so careful as not to fill up the stomach even though what I eat now is just a fraction of what I have eaten in the pre gastroparesis era.. I cook for my self.. I go to a Co-op Deli for a change... but the process of eating is what is really important to me.. small amounts ... very often ... eat something every time you are in the kitchen.. I have Ice Cream and Strawberry topping twice a day.. I have a jar of a trail mix I make up with Costco Mixed Nuts, Dried Apricots, Dried Craisins and Peanut M&Ms.. I eat a lot of fruit.. I make a chicken stew.. or Chili that is like a stew.. gravy making everything go down easy.. cutting up everything tiny... so the stomach does not have so much work to digest... Chew until it is ridiculous ..
Mayo MN gave me a way to cope.. I take a generic Nexium type pill each morning.. I do drink coffee .. like every Norwegian.. I take a Mirtazapine anti-depressant ... that the Mayo GI Doc said would help me want to eat more.. You have to eat to live.. so these first months keep a food diary... in the kitchen and in the bathroom... write done what you eat.. and date it... Write down what happens after you eat... and date it.. figure out what works.. Look back at the past posts.. Holiday time is a good time to gain weight... I had some great cookies... some great toffee... 1 piece at a time..
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Helpful -
Hug
1 Reaction