What can I do when in a gastroparesis flare?

Posted by lily21 @lily21, Mar 8, 2021

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.

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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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Teresa,
Can you tell me if when I go to Mayo will I have to stay or come back after my initial appt? I am coming from out of town and I am hoping I do not have to go once and come back.
Thanks
Brandy

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@lily21

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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Lily,
Did they give you a reason as to why you were not accepted?

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@brandywine8875

Lily,
Did they give you a reason as to why you were not accepted?

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No, and I wish they would have. So, now I'm waiting to see if I'm accepting a MercyOne Clinic in DesMoines, IA. That clinic will do the same round table discussion as Mayo does. I hope to hear something by 3/17.

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@brandywine8875

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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Hello,
Im a newbie as well. I was diagnosed in late Nov. 2020. I also have had bariatric surgery, Aug. 2018and I've have the sleeve surgery, so my stomach is the size of a medium banana. On top of everything else I have an ileostomy that was created in Dec. 2016. Needless to say I've got a complex system.

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@brandywine8875

Teresa,
Can you tell me if when I go to Mayo will I have to stay or come back after my initial appt? I am coming from out of town and I am hoping I do not have to go once and come back.
Thanks
Brandy

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@brandywine8875 – I’m referring to your question about your visit To Mayo.
I have been a patient at Mayo, Jacksonville. Before appointment you will get a schedule for your testing and Dr visit. You may have to stay an extra day or more, depending on the amount of testing done. There are several hotels close by with special Mayo rates. The visit is very well planned.

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Well, I was just told Mayo won't take me as a patient. But, I've been to Mayo with my Mom. Mayo is very good about scheduling appointments on the same day, or the following day. I hope you have a successful experience. Mayo is the best. I had hoped they would take me. Oh well.

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Why wouldn't they take you? I was referred by my GI. He can't treat me here in GA so he is sending me to Mayo.

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I wasn't given a reason. Ive waited 4 months to see if I could get in.

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@lily21

I wasn't given a reason. Ive waited 4 months to see if I could get in.

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…oh what a disappointment to wait months and not be accepted….I am in Canada, but wonder if Covid has affected the number of patients they see; we only have 2 ENTs where I live and for one it is a 2 year wait if not an emergency, regardless of pain. Receptionist said whereas he, Dr., saw 20 or more patients a day, he now sees 8, due to cleaning after every patient etc: still, might be nice of them to give you a reason for denying you, as well as not wait four months for an answer, do they have any other similar Clinics with comparable good reputation for help?

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I am hoping that the Dr. I may see is good. Im trying to avoid going through the hospital clinic that did all my surgeries if I can help it. I want a new set of eyes. Also the place that did all my surgeries is now 5 hrs from me.

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@lily21

I am hoping that the Dr. I may see is good. Im trying to avoid going through the hospital clinic that did all my surgeries if I can help it. I want a new set of eyes. Also the place that did all my surgeries is now 5 hrs from me.

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Oh sorry didn't read back that you are also waiting to hear from MercyOne Clinic? We live in Northern Ontario and its 4 hour drive to Toronto which is ok when feeling not too bad but not when in pain… wishing you the "best" new set of eyes and some help with your medical problems and pain June

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@lacy2 @lily21 When I first went to Mayo MN for my first Gastroparesis appointment they wanted me to have a blood and urine test first. I did it at one of the satellite Mayo's in Rochester the evening before my GI appoint.. then the test where they test the rate of stomach emptying.. that involved eating a standardized breakfast… so make sure you don't eat something first… they give you a certain time to eat the eggs, etc.. (I could not eat that fast without it coming up… and they do NOT want you to throw up…as there is a tracer in the meal.. so they do x-rays every hour for the morning… or as long as it takes… to see how long the meal takes to go through a certain point… I had a hard time keeping it down.. but was successful… You don't want to do that test many times… I spent 3 days there for all the various tests and doctor visits.. Have someone with you to take notes.. its all a blur.. Ken

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