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

Hi,
What a coincidence. I am actually at a hotel 5 miles from Mayo clinic Jacksonville, I leave tomorrow. I will be happy to you everything you need to know.
My GI back in GA sent me here bc he diagnosed me with gastroparesis after 4 days of testing it's not gastroparesis at all, I have pancreatitis and I have trouble keeping food down bc my esophagus is eroding.
The very first day you will see the Dr. mine was Dr. Lacy, he spent an hour with me just listening, after that he or she has an action plan for you and a goal.
I had blood work,urine sample my second day, the next day I had a esophageal manometry the absolute worst thing I've ever been through, then an upper GI, then an artery ultrasound.
Friday yesterday I had an endoscopic ultrasound I was put to sleep and they did an endoscopy with an ultrasound as well.
Everything is by schedule and the place is massive it's like a city, everyone was nice and when you d/l the patient portal every test you have will be with the results and the drs notes within a couple of hours.
I bet you are going to the Davis Building that's where Gastroenterologists are and on the 6th floor. I was exhausted from all the testing that I did not get one day to go to the beach or anything.
If you have any other questions let me know bc I literally just went through it. If I wasn't leaving tomorrow I could totally help you out.
Take care,
Brandy

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

Hi. Thanks for sharing your story. I go in 4 days and I am a wreck. LOL Mayport, oh I been there. I had a bro in law who was there. Got to go onto an aircraft carrier 🙂 Hope this finds you well. So from your story and your experience, they listened and were caring and scheduled you for stuff right away while you were still there. I just spoke to someone who was there yesterday and got dismissed and sent home same day with no answers. That is a huge fear of mine.
I have my consult appointment then my allergist and then my gasto. But no test or anything, just my consults for them. I assume they will make a schedule once they speak to me? I can not sleep at night not knowing. They did send my letter but it just said plan on staying 7 to 10 business days. But I think they tell everyone that. Gonna stay at the Holiday Inn by Town Center. I also want to ask about the tube you had or still have. I been only eating 300 or so calories a day for weeks and weeks. My doc here said he wants me on one but to wait and see if Mayo will do it. If they do, I hear they are smelly all the time. And that it is painful at first. I appreciate your opening up and sharing with me. It helps more than you know. Lucky for me I can go back and forth to there if need be, it is 3 hour trip.

Hi,
What a coincidence. I am actually at a hotel 5 miles from Mayo clinic Jacksonville, I leave tomorrow. I will be happy to you everything you need to know.
My GI back in GA sent me here bc he diagnosed me with gastroparesis after 4 days of testing it's not gastroparesis at all, I have pancreatitis and I have trouble keeping food down bc my esophagus is eroding.
The very first day you will see the Dr. mine was Dr. Lacy, he spent an hour with me just listening, after that he or she has an action plan for you and a goal.
I had blood work,urine sample my second day, the next day I had a esophageal manometry the absolute worst thing I've ever been through, then an upper GI, then an artery ultrasound.
Friday yesterday I had an endoscopic ultrasound I was put to sleep and they did an endoscopy with an ultrasound as well.
Everything is by schedule and the place is massive it's like a city, everyone was nice and when you d/l the patient portal every test you have will be with the results and the drs notes within a couple of hours.
I bet you are going to the Davis Building that's where Gastroenterologists are and on the 6th floor. I was exhausted from all the testing that I did not get one day to go to the beach or anything.
If you have any other questions let me know bc I literally just went through it. If I wasn't leaving tomorrow I could totally help you out.
Take care,
Brandy

@gastrogirl

I am doing okay. I am sure I will feel even better when .. hopefully.. the doctor takes these staples out Tuesday.. there are only 3, but hey I have to lean back and sometimes I unintentionally lean too hard on them. In my sleep I wind up on them too. I am already walking better. I am sure soon able to sit in the car without pain.. and make that trip to the Mayo Clinic. Maybe play with my granddaughters more actively. I can hope 😃

I am sorry the person you know found no answers. Sometimes even the best have no idea how to help. I hope the person keeps trying to find a doctor who may have the answers. If they tell you they cannot help you ask them who might be able to… is my best suggestion.

On the feeding tube.. I had mine in for a little over a year maybe 13-14 months. There are several types of gastric feeding tubes. Some have a button/stoma/flange. and some not.. mine did not. Not sure what they call it. These may be wrong words. Sometimes the correct word just will not hit my mind.

I just had a gastric tube coming out a hole.. the internal end went into what they call the remnant stomach… I had a gastric bypass and the other part of the stomach is called the pouch. That is where my food goes now. With you it will be your stomach. There will be a balloon between the stomach and skin.. meat layer .. to hold the tube in place. You have to keep the external area around the tube clean. Around the tube when it got irritated is only time it hurt me. They told me to use rubbing alcohol to clean around the tube. I then took a small piece of gauze pad and cut a slit in it so I could place it around the tube. I taped it in place with tape that is easy on the skin.. can't think of name brand of it right now. My skin still got irritated around the tube. They said I could put some antibiotic ointment around the hole, but not on the edge of the hole. Yes, uncomfortable. The formula is smelly. The gauze will catch any leakage.. which I had very little. I changed the gauze twice a day. I am attaching a couple of photos to show my bag. Sorry.. I never took a photo of the tube going into me. On one side of the bag is water and the other is the formula. when full it weighed probably around 3lbs.. which is a lot when you are weak. I could not carry it to start with.. my poor hubby was my pack mule. It comes with a pole .. much like a IV pole for when you are sitting. I found it awkward to walk with the pole. Most of the time I put the bag on a table or chair. The pole was mostly used to hold the bag when my husband prepared everything.

Some people have a formula that they put directly into the tube with a syringe. Mine was a constant feed. My husband did all the figuring on the rate .. which takes some figuring as you are weaning off onto food. I had to maintain my weight for two months without using the feeding tube before they removed the tube. The tube kept me around 140lbs. That is what they wanted me to stay at.. just in case I started losing again. While taking care of my mom I dropped to 117lbs. The Mayo doctor said if you do not gain weight you will need to go back on the tube. My blood pressure was making me feel awful because it was low. My family doctor told me he wanted me to eat salty food and to eat, eat, eat.. so I did and I am back up to 1401bs. I honest feel better between 130-138lb. So if I could lose a little I would feel better. Being able to walk better should help 😃.

If you do have to have a feeding tube someone will tell you how to use it. With me the company rep came to my hospital room. Unfortunately my room was very busy.. I had no idea what she was telling my husband and the doctor was trying to tell (dilaudid medicated) me instructions and hubby trying to listen to two people at a time. Hubby should have ask the rep to wait until after the doctor finished talking.. lesson learned. Hubby was so tired.

Anyway we had everything to get us started.. they said a nurse would come out to set it up.. the company the nurse was with called and said it would be a few days before they could come. Of course I couldn't wait on them for days. I told hubby we can do this together. The bag shows how to wind the tubings around.. The rep had given hubby a card and he called her and she helped on setting up the rate and such. The nurse came twice and took my temp and blood pressure and asked how much I weighed. Hubby had bought a scale to keep up with my weight… this is all at the campground. I could not leave area until my six week checkup. At my two week check up I told the surgeon I did not need the nurse. I can keep up with my temperature, weight and blood pressure. So he had her dismissed. UPS delivered my formula to the campground. We had enough notice to change delivery to home address.

After I was off the feeding tube.. which feels weird coming out. The machine went back to the company. I had formula and bags leftover. I donated them to Easter Seals and a 6 year old got the formula and an elderly lady got the bags.

Hello @thekaggaigeoffrey and welcome to Mayo Clinic Connect. Can I ask if you will be seeking care at Mayo Clinic Jacksonville and are looking for what you can expect?

Thanks so so much for the info. You had to stay the entire 6 weeks? Not sure I can afford a hotel for that long. Hah! But maybe I will end up not needing the tube. Can not wait to see how it all goes. Take care of yourself and thabnks again for all the info. HUGS!

Thanks so so much for the info. You had to stay the entire 6 weeks? Not sure I can afford a hotel for that long. Hah! But maybe I will end up not needing the tube. Can not wait to see how it all goes. Take care of yourself and thabnks again for all the info. HUGS!

Hello, @gastrogirl. I've been wondering about your situation and how you're doing during this wait to get to the Jax Mayo. This is so tough, I'm sure.....waiting for an important, possibly life changing visit is the worst. You seem to be doing well, tho. I wanted you to get to chat with @artist01 because she's been through so much gastro stuff and is very knowledgeable and supportive. She's a wonderful, positive resource for you now and as this journey continues. Remember her for those reasons.

I see you've gotten all kinds of responses the last week or so. Well, I think you can relax a bit now and do some thinking. It may be time for you to stop trying to self-diagnose and predict through fear and not quite enough information what will be happening the next week or so. It's time to take a step back, take some good, cleansing deep breaths, sit quietly alone and think. Amazing what will happen when we do that.....just think.

You have your hotel room scheduled. You know where you'll be and how to get to the clinic. You have a map, I'm sure they sent you one in your packet w/your schedule and other information. They're so well organized and helpful, you are full of good info now.

Has your portal been helpful? What kind of schedule do you have now? I suppose you have a first meeting with your gastro doctor to meet and give you a chance to exchange information. He has your records and will have spent some time going over them well so he knows much of what they offer even before you walk in. Hopefully, you have a journal you've begun as we first discussed filled with lots of early information to share and questions to ask. This is extremely important, as he needs to hear from you just what's going on, for how long, the progression of the issues and your expectations from him.

Do be frank and up front with everyone. These folks are there for you. They are your advocates and are there to help you find answers, a diagnosis, develop a treatment and care plan. You are partners in this. Remember that...no adversarial relationships here, only supportive and helpful, caring and working for you.

Trust is extremely important. They must trust you are honest and forthright with them. You must trust they are on your side and will help every way possible. That trust is a real tough issue for me. I've had so many years of not the best care, years with no or wrong answers and gobs of questions! So, trust is of utmost importance. That doesn't mean you accept everything they say as gospel. It's not. they're on this investigative journey with you, hand in hand. So, trust that they have your best at heart.....

I honestly doubt you'll be looking for fun things to do when you leave the appointments and go to the hotel. You'll be tired and want good rest and sleep. Eat well, not too much, but what you know is good for your situation and naturally, what they tell you based on the schedule of tests. I imagine you'll be having tests most of the days you're there. And there are some very interesting tests someone has dreamed up! No need to fear, we all survive them just fine and they give the docs good information, so just go with the flow.

I found every single person at this Mayo clinic to be helpful, kind, full of information if you ask, wanting to help you. Remember, fear is not your friend. Fear causes paralysis very often....in thoughts, in movement, in healing. Fear of being ignored I've heard from your messages.....no, you will be helped and advised. I imagine after you and your doctor complete your first meeting, he'll have an idea and share with you his plan of action. So just relax and be prepared to hit the ground running. they are excellent schedulers. You'll have your days filled with new docs, new nurses, new tests, and adventures.

As you begin to get some answers, and you may have some biopsies from tests that require a few days to get results....but, most of the test results and pictures from the tests and doctors' notes will be on your patient portal within a few hours. It remarkable. You will have answers written by the doctors on your portal that will indicate their findings and thinking as to what direction to go next.

Trust. Relax. Be thankful for this wonderful opportunity to have the best care available. So many can't get this care. We're so blessed to have Mayo close to us and have the ability to get this specialized medical help. You are special. You are blessed. You are on your way to finding answers, getting treatment and healing. Let your thought and your mind be in charge of this process beginning tonight. Begin healing tonight.

When you have time, ck online for the connection of the brain to pain and healing of the body.
Blessings, my friend. May your next days be filled with good things. Good people. Good thoughts. Healing.
elizabeth

@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