Does the Cleveland Clinic have any different info or treatment than the Mayo? I would be interested to learn more. I concur with Ken's post above, except my spouse very much understands my eating and nutrition challenges. She is my biggest supporter and I couldn't do this without her. I don't know how she does it, but she does understand and is very compassionate. My diet is her diet (our diet).
My surgery was a Nissen. I had NO IDEA the failure rate was that high. My local surgeon didn't even address vagus nerve injury risk with me prior to my surgery, or even after when I had all my complications! I try not to hold onto my anger, but some days it is hard not to!
Does the Cleveland Clinic have any different info or treatment than the Mayo? I would be interested to learn more. I concur with Ken's post above, except my spouse very much understands my eating and nutrition challenges. She is my biggest supporter and I couldn't do this without her. I don't know how she does it, but she does understand and is very compassionate. My diet is her diet (our diet).
@rossjt While Mayo MN GI dept is rated the best in the Country... Cleveland Clinic is just a little below.. so Very good.. If your insurance will cover you going there.. it is close by that part of Western NY ..it is always good to get 2 opinions..and to see how bad your case is..
... I was under the impression that you were diagnosed in an ER..
It is just my experience with family and others that they do not usually understand how the gastroparesis varies so much from day to day .. people with gastroparesis usually need to put on the pounds .. while others do all kinds of diets not to gain weight.. Good Luck..
@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..?
Thanks for your posts! My wife and I often laugh...Those of us with gastroparesis are certainly exempt from America's obesity epidemic! We have to be part of a VERY small population subset working to GAIN weight:)!
I'm so sorry! At the very least, I hope your hernia repair was successful. The pyloromyotomy the Mayo Clinic did for me, in my opinion, has really helped my stomach empty. I have to be very careful in what I eat, but I CAN eat! Dr. Alexander was my Mayo gastroenterologist and Dr. Robert Shen was my thoracic surgeon.
As I work with trial and error on what I can and cannot eat, I find that sticking with High Protein Boost (6 grams of fat), 3 per day, taking 12 hours to drink them, and an electrolyte drink of 16 ounces, most days, that is all I can do. I have found that I can fix a scrambled egg, using very little olive oil, and add 1 ounce of Cabot Seriously Sharp Cheddar fat free cheese is very good. I can only do that a couple days a week. I can have a few Pretzels at a time(3), a few Baked Lays Chips(3-4) once or twice a day. I add PB2 powder ( peanut butter) to my Boost to give a little more protein and a new flavor. My Dietitian wants me to eat small meals in between, but I tried and it makes me too sick. I also found a liquid Multi Vitamin. It doesn't taste too bad. Not like those nasty ones we gave to our babies in the 70's!! LOL 😂
Blessings,
Darlene
As I work with trial and error on what I can and cannot eat, I find that sticking with High Protein Boost (6 grams of fat), 3 per day, taking 12 hours to drink them, and an electrolyte drink of 16 ounces, most days, that is all I can do. I have found that I can fix a scrambled egg, using very little olive oil, and add 1 ounce of Cabot Seriously Sharp Cheddar fat free cheese is very good. I can only do that a couple days a week. I can have a few Pretzels at a time(3), a few Baked Lays Chips(3-4) once or twice a day. I add PB2 powder ( peanut butter) to my Boost to give a little more protein and a new flavor. My Dietitian wants me to eat small meals in between, but I tried and it makes me too sick. I also found a liquid Multi Vitamin. It doesn't taste too bad. Not like those nasty ones we gave to our babies in the 70's!! LOL 😂
Blessings,
Darlene
@darlenemeeder Have you tried making your own smoothies .... a good way to get more fresh vegetables and fresh fruits..? Can you stand to take yogurt .. ? Smoothies are really tasty.. and easy to me to digest.. I use frozen bananas sometimes... peel them first ... then put those extra ripe ones in the freezer in a plastic bag... Simple snacks... I can eat cheese on a cracker...grab one as you go through the kitchen.. seafood spreads on a cracker also works for me... Good experimenting...
While I label my gastroparesis as severe, gastroparesis is more severe for many of you than me. As I know this disorder firsthand, I have huge empathy for each of you. My ability to eat, or more appropriately, for my stomach to empty, was so significantly improved by the surgical modification of my pylorus (sphincter between the stomach and the small intestine). Food type and amount remains limited. I am very careful and as with all of you, I pay an excruciating price when I let my guard down, and sometimes even when my guard is up and I haven't eaten or drunk anything that should be problematic. My point, or my question is this: Have any of you had a pyloroplasty (completely cut the sphincter so it is 100% open 100% of the time) or a pyloromyotomy (what I had done; cut the muscle around the sphincter so that when it opens as it randomly does with gastroparesis, it is open 100% instead of randomly maybe 2%, 47%, etc.)? Along these lines, have any of you had a pacemaker put in your stomach and what kind of successes and challenges have you had? Similarly, have any of you had a pump put in your stomach and what kind of successes and challenges have you had? I know there is no perfect, win-win surgical or prescription or diet solution, but I am interested to learn about the successes and challenges of people who have had their pyloric sphincter surgically modified, who have had a pacemaker installed in their stomach and/or who have had a pump put in their stomach. Thanks everyone!
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Does the Cleveland Clinic have any different info or treatment than the Mayo? I would be interested to learn more. I concur with Ken's post above, except my spouse very much understands my eating and nutrition challenges. She is my biggest supporter and I couldn't do this without her. I don't know how she does it, but she does understand and is very compassionate. My diet is her diet (our diet).
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2 ReactionsI went in for a hernia repair and ended up with a fundiplacation and a damaged vagus nerve..
@rossjt While Mayo MN GI dept is rated the best in the Country... Cleveland Clinic is just a little below.. so Very good.. If your insurance will cover you going there.. it is close by that part of Western NY ..it is always good to get 2 opinions..and to see how bad your case is..
... I was under the impression that you were diagnosed in an ER..
It is just my experience with family and others that they do not usually understand how the gastroparesis varies so much from day to day .. people with gastroparesis usually need to put on the pounds .. while others do all kinds of diets not to gain weight.. Good Luck..
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1 Reaction@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..?
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1 ReactionThanks for your posts! My wife and I often laugh...Those of us with gastroparesis are certainly exempt from America's obesity epidemic! We have to be part of a VERY small population subset working to GAIN weight:)!
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Helpful -
Hug
1 ReactionI'm so sorry! At the very least, I hope your hernia repair was successful. The pyloromyotomy the Mayo Clinic did for me, in my opinion, has really helped my stomach empty. I have to be very careful in what I eat, but I CAN eat! Dr. Alexander was my Mayo gastroenterologist and Dr. Robert Shen was my thoracic surgeon.
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Like -
Helpful -
Hug
1 ReactionAs I work with trial and error on what I can and cannot eat, I find that sticking with High Protein Boost (6 grams of fat), 3 per day, taking 12 hours to drink them, and an electrolyte drink of 16 ounces, most days, that is all I can do. I have found that I can fix a scrambled egg, using very little olive oil, and add 1 ounce of Cabot Seriously Sharp Cheddar fat free cheese is very good. I can only do that a couple days a week. I can have a few Pretzels at a time(3), a few Baked Lays Chips(3-4) once or twice a day. I add PB2 powder ( peanut butter) to my Boost to give a little more protein and a new flavor. My Dietitian wants me to eat small meals in between, but I tried and it makes me too sick. I also found a liquid Multi Vitamin. It doesn't taste too bad. Not like those nasty ones we gave to our babies in the 70's!! LOL 😂
Blessings,
Darlene
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3 ReactionsI’m sorry you have such severe Gastroparesis Darlene
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1 Reaction@darlenemeeder Have you tried making your own smoothies .... a good way to get more fresh vegetables and fresh fruits..? Can you stand to take yogurt .. ? Smoothies are really tasty.. and easy to me to digest.. I use frozen bananas sometimes... peel them first ... then put those extra ripe ones in the freezer in a plastic bag... Simple snacks... I can eat cheese on a cracker...grab one as you go through the kitchen.. seafood spreads on a cracker also works for me... Good experimenting...
-
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Helpful -
Hug
3 ReactionsWhile I label my gastroparesis as severe, gastroparesis is more severe for many of you than me. As I know this disorder firsthand, I have huge empathy for each of you. My ability to eat, or more appropriately, for my stomach to empty, was so significantly improved by the surgical modification of my pylorus (sphincter between the stomach and the small intestine). Food type and amount remains limited. I am very careful and as with all of you, I pay an excruciating price when I let my guard down, and sometimes even when my guard is up and I haven't eaten or drunk anything that should be problematic. My point, or my question is this: Have any of you had a pyloroplasty (completely cut the sphincter so it is 100% open 100% of the time) or a pyloromyotomy (what I had done; cut the muscle around the sphincter so that when it opens as it randomly does with gastroparesis, it is open 100% instead of randomly maybe 2%, 47%, etc.)? Along these lines, have any of you had a pacemaker put in your stomach and what kind of successes and challenges have you had? Similarly, have any of you had a pump put in your stomach and what kind of successes and challenges have you had? I know there is no perfect, win-win surgical or prescription or diet solution, but I am interested to learn about the successes and challenges of people who have had their pyloric sphincter surgically modified, who have had a pacemaker installed in their stomach and/or who have had a pump put in their stomach. Thanks everyone!
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