Gastroparesis

Posted by lily21 @lily21, Mar 8 11:32am

What can I do when in a gastroparesis flare? Even water is painful to drink. I am waiting for a call from Mayo GI clinic. Waiting is hard. I do take an acid reflux med, and Tums though the day. I also take zofran as needed, but thats not working either. Ive had a flare for 3 days.

Hello @lily21, I'm sorry to hear of your gastroparesis flare-ups. That sounds uncomfortable.

If you are comfortable sharing more can you share how often these flare-ups occur? Do they follow any pattern? For example, after eating certain foods or large meals, etc. You mention that drinking water is painful. Is pain the main symptom that you have?

I look forward to hearing from you again as you seek some answers. Will you post an update?

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I was diagnosed late Nov. 2020, so I'm still not sure what causes the flares. I have issues throughout my entire GI system. I eat small meals already as I had gastric sleeve surgery in 2018. I had my entire large colon removed in 2016 due to ulcerative colitis. I have an ileostomy, so staying hydrated is tough even on a good day. I often have high output that can land me in the hospital when it is really severe. I take a heartburn medication to help with GERD, but it doesn't touch this heartburn. I try and eat high protein, lots of chicken, non breaded. I drink lactose free milk, as most lactose I cant tolerate post bariatric surgery. I like flavor,, but not spicy. I'd say 3 out of 5 days I have increased heartburn and most days lots of burping. I was just put on Reglan on 3-8-21, but I have to be careful as it increases my ostomy output.

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@lily21 My gastroparesis was diagnosed in 2015 ..caused by a failed Nissen that could not be fixed.. Mayo MN GI Doctor said I would have this the rest of my life. I had lost 50 pounds.. and I was not out of shape .. 5'10 male weighing 190.. waist 36" wearing Large sweaters and shirts.. I am not sure of how you characterize "flare-ups" as I have problems with food coming back up whenever I eat too fast.. I feel best when my stomach is empty. I take the generic Nexium 20 … I drink Pedialyte.. as I cannot drink much with meals.. Pedialyte gives you more of the minerals needed to be more hydrated quickly … I do drink coffee 2 cups before eating anything but a banana and a piece of toast.. the toast has to be crisp…doughy breads and leafy salads are a recipe for disaster.. the trick is to find a few things that work.. and keep at just those..eating slowly with time between each helping.. I typically take an hour to eat each meal.. and then eat a little each time I go through the Kitchen.. Back a year ago when I could go to a restaurant.. a serving would do me for that meal and as much again tomorrow in a take home container.. I have only had steak one time in 6 years …and I love steak.. but everything has to be cut up soooo very small so the stomach does not have to work very hard to let things go on down.. avoid broccoli and cabbage… I love ice cream with strawberry topping.. but I cannot do more that 1 small dip with a few strawberries or it comes up… that is a sad thing.. I am 83 now.. and look forward to being able to travel a little.. Ken

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@ken82

@lily21 My gastroparesis was diagnosed in 2015 ..caused by a failed Nissen that could not be fixed.. Mayo MN GI Doctor said I would have this the rest of my life. I had lost 50 pounds.. and I was not out of shape .. 5'10 male weighing 190.. waist 36" wearing Large sweaters and shirts.. I am not sure of how you characterize "flare-ups" as I have problems with food coming back up whenever I eat too fast.. I feel best when my stomach is empty. I take the generic Nexium 20 … I drink Pedialyte.. as I cannot drink much with meals.. Pedialyte gives you more of the minerals needed to be more hydrated quickly … I do drink coffee 2 cups before eating anything but a banana and a piece of toast.. the toast has to be crisp…doughy breads and leafy salads are a recipe for disaster.. the trick is to find a few things that work.. and keep at just those..eating slowly with time between each helping.. I typically take an hour to eat each meal.. and then eat a little each time I go through the Kitchen.. Back a year ago when I could go to a restaurant.. a serving would do me for that meal and as much again tomorrow in a take home container.. I have only had steak one time in 6 years …and I love steak.. but everything has to be cut up soooo very small so the stomach does not have to work very hard to let things go on down.. avoid broccoli and cabbage… I love ice cream with strawberry topping.. but I cannot do more that 1 small dip with a few strawberries or it comes up… that is a sad thing.. I am 83 now.. and look forward to being able to travel a little.. Ken

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I have an RNY bypass. Have had several intestinal RE sections and other complications However nothing is free. When not having severe symptoms
The sweet taste of being normal weight (140 pds lighter) is worth a lot Some things can’t be fixed without big consequences

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@nova1976 I really know very little about RNY bypass.. but gastroparesis is commonly a result of surgery complications and mishaps.. I found the following from UCLA… In the case of complications like acid reflux, the need for revision surgery may be obvious. But if it's a matter of weight regain, it depends in part on how much. “When your BMI meets the qualification for primary bariatric surgery, 35-40, revision should be considered,” Dr. Sebesta says. May 2, 2018

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@hopeful33250

Hello @lily21, I'm sorry to hear of your gastroparesis flare-ups. That sounds uncomfortable.

If you are comfortable sharing more can you share how often these flare-ups occur? Do they follow any pattern? For example, after eating certain foods or large meals, etc. You mention that drinking water is painful. Is pain the main symptom that you have?

I look forward to hearing from you again as you seek some answers. Will you post an update?

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Well, I'm back at square one. Mayo will not take me on as a patient. Bummer. Now I need to find another place closer than The University of Iowa Hospital, which is 5 hrs from where I currently live. I live in NW Iowa, I'm far away from everything. I am feeling lost right now. Mayo is the best, and I hoped that would work. I'm not sure why I wasn't accepted.

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@lily21 My granddaughter who has gastroparesis goes to the Univ. of Iowa Hospital for her doctors.. and is pleased.. Did your primary Care physician refer you to Mayo MN..? I would NOT consider McFarland in Carroll or Ames… I live in Ames.. and thank my lucky stars I got into Mayo MN.. Ken

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@ken82

@lily21 My granddaughter who has gastroparesis goes to the Univ. of Iowa Hospital for her doctors.. and is pleased.. Did your primary Care physician refer you to Mayo MN..? I would NOT consider McFarland in Carroll or Ames… I live in Ames.. and thank my lucky stars I got into Mayo MN.. Ken

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I had lived in Eastern IA for 15 years. I now live 5 hrs away in Emmetsburg, IA. It was closer to Mayo. I was looking for a trama hospital closer to me, as my rural hospital is good for the little things, however I don't usually do things little. I was also wanting a new set of eyes. Do you know of any place in DesMoines? Its 2.5 hrs from me. Thanks

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@lily21 My granddaughter lives in Des Moines.. and still she goes to Iowa City for that .. There is a Digestive Disease Clinic on Univ Ave in West Des Moines.. but I don't know anyone who goes there at the moment.. I will look into it.. Are your Medical records on the Epic System, used by Mayo and 100s of leading clinics and hospitals..? If so it is easy to give them access to check your tests prior to you getting there..

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@lily21

I had lived in Eastern IA for 15 years. I now live 5 hrs away in Emmetsburg, IA. It was closer to Mayo. I was looking for a trama hospital closer to me, as my rural hospital is good for the little things, however I don't usually do things little. I was also wanting a new set of eyes. Do you know of any place in DesMoines? Its 2.5 hrs from me. Thanks

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@lily21 My granddaughter noted that Dr. Huy Tran MD PhD FHRS was her doctor..but others in the dept are good too…. take a look at the following link.. https://uihc.org/gastroparesis

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I saw a you tube about thiamine deficiancy and digestive issues including gastroparesis. It may be helpful for you to do some research on this. Vitamin b6 deficiency was also mentioned. You may want to ask your dr. how many b vitamins are too many so you don't over do it.

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Hi Lily,
I was just diagnosed with gastroparesis, and I have been referred to the mayo clinic in Jacksonville, FL. I have had 16 colonscopies in 2 years and have spent a total of 1 year in and out of hospitals by days. I can eat but I throw up almost immediately after eating. I take zofran for nausea and for the pain I take oxycodone.
I would love to talk to you further as I am a gastroparesis warrior.
Brandy

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