Going to Mayo Jacksonville for Gastroparesis...what to expect

Hi Laurie, I moved your message to the discussion @gastrogirl started about visiting Mayo Clinic soon, so that you can connect with her here.

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Hello, @gastrogirl....love the name, BTW! I go to Mayo Jacksonville regularly now for the last few years. Get ready for lots of information....

I am a gastro patient, in fact just had an endoscopy a few weeks ago, having another one May 3, Monday. A Schatzki Ring was seen and it's causing me to not be able to swallow well at times. Even water or a sip of liquid will stop mid-way and can be painful as it slowly gets in the right place to ease on down. So, since they found this and it is causing issues with swallowing, I'm having a 2nd procedure to use a balloon to stretch the scar tissue caused by the relux from the stomach over the years.

I have several issues that I see my gastroenterologist for help - long term reflux, Barrett's esophagus, Schatzki Ring, hiatel hernia, IBS, polyps in stomach and colon, etc. Each issue will be addressed by your doctor and/or his assistant and you with the team will make joint decisions about possible steps.

I've found Mayo, the people and the concept itself, very easy to work with. I have been surrounded with kindness, expert caring professionals who truly are there to help me discover what is happening and find answers. They are very good at that. I also want you to know I have been going now for 3 years, often, but have not had one test more than I should. They are not test happy, at least not with me. But, I have had and am still having tests and procedures. But, I have a lot going on so work with several areas.

In fact, I questioned having this 2nd endoscopy, especially so soon. Concerned about sedation, do I really need it, can it wait, etc. I saw the doctor last Thursday and we agreed I am doing well, much better in many areas, but this is indeed one thing that should not wait. Quality of life is very important. And, I got a go ahead from my neurologist, so I'll be there May 3. Then, soon after, I will be able to swallow more easily, without pain or choking. This is a good thing.

I urge you to call the main number and simply ask the operator for the secretary for your doctor in the gastroenterolgy dept,. She'll be so sweet and put you to the right person. Just tell her, every time you call, your name and birthdate. Every time!!!!!!

Then, mention the appointment and she'll give you every bit of information you need. She'll put a full schedule in the mail to you the same day, with all the information about your appointments, doctors, what to do and not do, what to wear, everything. Once you make contact with that dept, you're on your way to an easy transition to the Mayo way of doing things.

Also, don't worry about scheduling or whatever. You will see your first doctor, like him or her and feel comfy immediately. Then, as you openly and honestly describe your situation, he will set you up in the direction you need. He will refer you for testing, for bloodwork, for whatever and also may bring in other physicians to consult about this or other issues you may have bothering you. May I suggest you let them help you with other things that may be going on if you need them. It's the time to get diagnosis and treatment from the best.

I'll chat again if you have any questions about this process. It's really well run, simply done and makes so much sense. Amazing. And, your medical team will talk with you honestly and openly. they also talk with each other about you in order to do what you really need. I love that and have found it has solved many problems. What a concept....docs talking with each other about their patient!

Ok. There you go. Let me know if you have any questions. You'll like Jacksonville, Florida, and Mayo. It's lovely. The people are kind and helpful and pleasant. Temps are currently in the 70-80's, down in 60's at night. Lovely. Casual, Comfy.

Blessings on your journey. This is a wonderful beginning to getting good help. elizabeth

Oh, use your patient portal a lot. Ck it now for your schedule. It may surprise you what you can learn there. And, your test results and doctor consult notes will be available to you to see in hours from your visits. It's amazing. It 's your body and they treat you and it with respect. ess77

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Thanks so much and good luck with your issue! I do have the portal and the app. So far I have not gotten anything from anyone. I am exactly three weeks out. Is there a certain time when they do send you stuff before your appointment? Thanks so much!

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@gastrogirl Hello. I hear you'd like some support from the Mayo group regarding your upcoming visit to Mayo Clinic. Please don't hesitate to contact me if I can be of any help. Hugs. Laurie

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@gastrogirl

I am tired.. and I ramble when I am tired, but cannot see that changing in the near future.. so my apologies for rambling in advance.

I have not been to the Mayo Clinic since 2019. So things may have changed.

Things in our lives changed for sure.. I and my husband had to take care of my mama. She had another stroke after about a year and a half in our care and I was not able to take care of her anymore.. taking care of her took a toll on my body. I pushed my body to its limits. We put her in a nursing home / rehab facility early January of last year.. she was doing well with us visiting often.. then covid-19 hit in March and we could not visit her and she went downhill quickly. She had another small stroke in June. She passed last August of a major stroke.

I had thumb surgery last year... mama had landed on my thumb a couple of times when I broke her falls enough that she did not hurt herself badly. I had arthritis in my thumb pretty bad already, but it aggravated it more. Then my SI (sacroiliac) joint started giving me problems. Probably from taking care of her. I loved her so much in this life that the pain is worth it.

Next Tuesday... in my hometown... I will have SI joint fusion. Hopefully after recovery I can arrange to go to the Mayo clinic. I have achalasia, Barrett's esophagus and esophageal spasms... and still have pains in my upper abdomen and ribs. I have my esophagus dilated every 12-18 months. I am having more difficulty swallowing.. I don't want to wait much longer.. there is a danger of aspirating.

I first went to Mayo for abdominal surgery. 2013-2014-2015. .. yes, 3 surgeries there. My insides got rearranged in the surgeries and my local GI doctor does not feel comfortable doing the endoscopies.. he thinks I am better off with the care at Mayo Clinic.. I like honest doctors.

I had gastroparesis before these surgeries. I had to have a gastric bypass (2014) to repair a giant paraesophgeal hiatal hernia. .
only option left to fix it. So my stomach empties well most of time because of the rerouting.. still a bit slow. Now I deal with aphasia which I had with the gastroparesis but it was not very bad yet. With aphasia the sphincter does not open well to let food into my stomach .. it stacks in my esophagus. The dilations of the esophagus help.. . no cure as with gastroparesis... just options to help. There are surgeries to help, but the dilations are best choice for me rightl now.

I live in Albany Georgia. My husband usually helps me make the Mayo clinic appointment. I have a hard time hearing on the phone. Since it has been a bit since I went things may have changed. Usually after we call for an appointment the GI department calls and ask when a good time for me to come is... Then call me back to tell me how many days. The first time for the GI department they asked me if I could arrange to stay for an extra day in case another test was needed. My husband is retired Army and we have a travel trailer. So we stay at Mayport Naval Station. On down time we like watching the people fish at the jetty and watch the ships come and go. Sometimes we stay in one of their cabins or at their lodge. We usually go down on a Sunday and come back on a Sunday.. time away from home is a nice break for us. At the cabin or lodge we only stay a couple of days.

If you haven't heard from the Mayo Clinic call and ask to speak to someone in the departments you have appointments with. They may ask to call you back and if you have not heard back within a couple of days call again.

Advocate.. Advocate! .. speak up for yourself. If you have someone to go with you all the better. I am blessed to have a awesome husband that is always by my side helping. We write out questions and write the answers down during the appointments. Always have something to take notes with. If you do not understand what is being said during an appointment ask them to explain again.. I've told them to dumb it down for me. Sometimes they will use medical terms I am not familiar with. .. now they are very very familiar.

There is always someone nearby to answer questions on where to go and how to get there. The buildings connect. The first day you will usually start at the Davis Building.. but they will let you know in your itinerary where you go and how to prepare for your visit or test. Wear something comfortable. You may need a sweater in some areas of the buildings. I have a tote that I put my ipad and a shawl in... and water. I never have enough time to crochet there, but some take a craft along. I like to do my word puzzles and jigsaw puzzles in between appointments. I see the games better on my ipad than phone. I like to people watch if the games don't interest me.

I have not been interested in eating when I was at the Mayo Clinic... was on a feeding tube for a little over a year. My husband did not care for their food at the cafeteria. At least one day after appointments he would go to What-a Burger on the way back to camp. Most of the time he took snacks and glucerna with him... in my tote.. because he is diabetic ... and ate a meal when we got back to camp.

Again my apologies for rambling.

ZeeGee

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Hi there. Not sure if I ever got back to you. Life has been a whirlwind and brain fog is too real. LOL I go in 4 days. I feel better after reading everyone's experiences on here. Do you have any advice or knowledge about what to expect? I am very scared that I may go and speak to the gastro doctor and they may shrug me off and send me right home same day. I know someone this just happened too. Scheduled test for months from now. That is a huge fear. I am in hopes I speak to them, they go over my issues, want to run test or do something to help me on the spot.
Any advice or experiences you can share would be greatly appreciated! Thanks so much and hope all is well on your end.
Kimberly

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@gastrogirl

I am tired.. and I ramble when I am tired, but cannot see that changing in the near future.. so my apologies for rambling in advance.

I have not been to the Mayo Clinic since 2019. So things may have changed.

Things in our lives changed for sure.. I and my husband had to take care of my mama. She had another stroke after about a year and a half in our care and I was not able to take care of her anymore.. taking care of her took a toll on my body. I pushed my body to its limits. We put her in a nursing home / rehab facility early January of last year.. she was doing well with us visiting often.. then covid-19 hit in March and we could not visit her and she went downhill quickly. She had another small stroke in June. She passed last August of a major stroke.

I had thumb surgery last year... mama had landed on my thumb a couple of times when I broke her falls enough that she did not hurt herself badly. I had arthritis in my thumb pretty bad already, but it aggravated it more. Then my SI (sacroiliac) joint started giving me problems. Probably from taking care of her. I loved her so much in this life that the pain is worth it.

Next Tuesday... in my hometown... I will have SI joint fusion. Hopefully after recovery I can arrange to go to the Mayo clinic. I have achalasia, Barrett's esophagus and esophageal spasms... and still have pains in my upper abdomen and ribs. I have my esophagus dilated every 12-18 months. I am having more difficulty swallowing.. I don't want to wait much longer.. there is a danger of aspirating.

I first went to Mayo for abdominal surgery. 2013-2014-2015. .. yes, 3 surgeries there. My insides got rearranged in the surgeries and my local GI doctor does not feel comfortable doing the endoscopies.. he thinks I am better off with the care at Mayo Clinic.. I like honest doctors.

I had gastroparesis before these surgeries. I had to have a gastric bypass (2014) to repair a giant paraesophgeal hiatal hernia. .
only option left to fix it. So my stomach empties well most of time because of the rerouting.. still a bit slow. Now I deal with aphasia which I had with the gastroparesis but it was not very bad yet. With aphasia the sphincter does not open well to let food into my stomach .. it stacks in my esophagus. The dilations of the esophagus help.. . no cure as with gastroparesis... just options to help. There are surgeries to help, but the dilations are best choice for me rightl now.

I live in Albany Georgia. My husband usually helps me make the Mayo clinic appointment. I have a hard time hearing on the phone. Since it has been a bit since I went things may have changed. Usually after we call for an appointment the GI department calls and ask when a good time for me to come is... Then call me back to tell me how many days. The first time for the GI department they asked me if I could arrange to stay for an extra day in case another test was needed. My husband is retired Army and we have a travel trailer. So we stay at Mayport Naval Station. On down time we like watching the people fish at the jetty and watch the ships come and go. Sometimes we stay in one of their cabins or at their lodge. We usually go down on a Sunday and come back on a Sunday.. time away from home is a nice break for us. At the cabin or lodge we only stay a couple of days.

If you haven't heard from the Mayo Clinic call and ask to speak to someone in the departments you have appointments with. They may ask to call you back and if you have not heard back within a couple of days call again.

Advocate.. Advocate! .. speak up for yourself. If you have someone to go with you all the better. I am blessed to have a awesome husband that is always by my side helping. We write out questions and write the answers down during the appointments. Always have something to take notes with. If you do not understand what is being said during an appointment ask them to explain again.. I've told them to dumb it down for me. Sometimes they will use medical terms I am not familiar with. .. now they are very very familiar.

There is always someone nearby to answer questions on where to go and how to get there. The buildings connect. The first day you will usually start at the Davis Building.. but they will let you know in your itinerary where you go and how to prepare for your visit or test. Wear something comfortable. You may need a sweater in some areas of the buildings. I have a tote that I put my ipad and a shawl in... and water. I never have enough time to crochet there, but some take a craft along. I like to do my word puzzles and jigsaw puzzles in between appointments. I see the games better on my ipad than phone. I like to people watch if the games don't interest me.

I have not been interested in eating when I was at the Mayo Clinic... was on a feeding tube for a little over a year. My husband did not care for their food at the cafeteria. At least one day after appointments he would go to What-a Burger on the way back to camp. Most of the time he took snacks and glucerna with him... in my tote.. because he is diabetic ... and ate a meal when we got back to camp.

Again my apologies for rambling.

ZeeGee

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Hello.
I've had this chronic abdominal pain close to 2 years now. I've been to several consultants each with own diagnosis. Gastrodudenitis, GERD, metaplastic duodenal condition, PUD have been some of the diagnosis. I had a peritoneal non cancerous surgery in 2017 however. Of course I have a lot of gas.
Now that the pain isn't receding much with the medications am given, I resorted to researching my condition because the pain is unbearable and am not trusting myself living the rest of my lifetime with this condition then I came about this ACNES believing it might be the affliction.
There are painful points in my abdomen when pressure is applied. The confusion is that am able to do pull-ups and sit-ups with ease. Socks feel tighter and the feet feel extremely cold and uncomfortable on empty floor. Can I kindly get help now that my medics have somewhat failed?
Sorry for the long write-up and
Thanks

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