New GI patient with questions as I prepare for Mayo! ❤️

Posted by kista77 @kista77, Feb 23, 2022

Hi everyone,
I am so happy to be here! I have a new patient appointment with Gastroenterology the end of March. I will be driving from Maryland to Minnesota. I have lost almost 80 pounds in a year and a half and have inflammation in small intestine that they do not believe is from ibd. Been on prednisone since the end of November. Finally down to 20mg as of 3 weeks ago but symptoms are slowly coming back and my joint pain is so much worse. Looking forward to my visit and praying that they figure out what is wrong with me. I feel confident that they will 🙏🏼😭 any suggestions or advice if you are willing to share would be appreciated. Thank you so much!

Interested in more discussions like this? Go to the Visiting Mayo Clinic Support Group.

Hi @kista77, that's fabulous. I'm tagging several Mayo Rochester members to join the conversation like @roch @johnbishop @jenniferhunter @naturegirl5 and @loribmt to offer their tips. If you read through some of the other discussions in the Visiting Mayo Clinic group, you'll learn a lot about how to prepare and what to expect.

Do you have specific questions, concerns or things you'd like to know more about?

REPLY
@colleenyoung

Hi @kista77, that's fabulous. I'm tagging several Mayo Rochester members to join the conversation like @roch @johnbishop @jenniferhunter @naturegirl5 and @loribmt to offer their tips. If you read through some of the other discussions in the Visiting Mayo Clinic group, you'll learn a lot about how to prepare and what to expect.

Do you have specific questions, concerns or things you'd like to know more about?

Jump to this post

Thank you so much Colleen! I really appreciate it! I have been reading through all the different posts and have learned a lot of useful information and making notes.

REPLY

Good morning @kista77 What wonderful news for you! Mayo Rochester is sort of a home away from home for me so I’m happy to help you out. I’m posting a few links below to the most often asked questions. From you comments to Colleen, you’ve been already doing some reading in the forum to get ideas and making notes. Let’s see if these offerings are of help to you.

– How to get the most out of a visit? http://mayocl.in/2n5eXSH
– First visit to Mayo: Traveling alone http://mayocl.in/2hgasVG
https://connect.mayoclinic.org/discussion/what-are-your-accommodation-recommendations-when-coming-to-mayo/
https://www.mayoclinic.org/patient-visitor-guide/minnesota/concierge-services
https://www.mayoclinic.org/patient-visitor-guide/minnesota/hotels-lodging?_ga=2.195758508.1027096109.1611755425-618629067.1611755425

– Tips: Traveling to Mayo to get medical care safely during COVID-19 https://connect.mayoclinic.org/discussion/your-tips-traveling-and-getting-medical-care-safely-during-covid-19/

Will you be traveling alone? Do you have any specific questions?

REPLY

@kista77 I think you are in for a treat, not only for the excellence in medical care, but also for some of the interesting things you can see while in Rochester if you are up to it. The best place that I found to stay near the campus with the Gonda & Mayo buildings is Candlewood suites because they have full kitchens in the room, are close to Mayo, but not so close as to be more expensive. I discovered this from speaking with the Mayo Concierge services (free) and the hotels in walking distance do cost more. Most hotels have their own shuttles to the Mayo campuses (including St. Mary's Hospital) and you can park on one of the Mayo parking decks that they call "parking ramps". You have to pay each day and if you move the car to another ramp, but it is reasonable. Parking fills up, so get there early in the day. You can buy a pass for several parking days that might save some money now or on a future followup visit. Connect member, Lawrence @lmindela is from the Concierge services.

Rochester parking information
https://www.mayoclinic.org/patient-visitor-guide/minnesota/parking
As you drive across Wisconsin and cross the Mississippi, it is very scenic with hills and bluffs above the river and I have seen eagles circling there. From that point, it is about an hour to Rochester through farm country and you wonder how there will be a small city out there, but there is and it is completely surrounded by farms and summer cornfields. Each time I have visited, I've discovered something new to me, like the statue garden across from the shuttle drop off entrance at the Gonda building. I took a photo sitting with the statue of the Mayo brothers on the steps there. There is art everywhere, in elevator lobbies, waiting areas, etc and they do give tours, but currently tours are discontinued because of Covid protocols. Often someone may be playing a piano in a lobby.
https://newsnetwork.mayoclinic.org/discussion/the-nurse-at-the-piano-and-a-story-of-hope/


Another thing on my "to do" list is a tour of the mansion of Charlie Mayo. Tours are run by the historical society and will be resuming on March 19th.
https://www.olmstedhistory.com/mayowood
There is also a small Mayo history museum in the area between the Gonda and Mayo buildings (which are connected). It may be closed due to Covid protocols, but you can ask.

We all come to Mayo for a medical reason, and when you get there, you realize how special it is because you walk into an atmosphere of hope and healing. That is why the art and music is ever present. It gives you a level of comfort and can distract you from your worries. I see Lori has already shared some great resources. I can tell you that I love coming to Mayo. I think you will too.

Is there something you would like to do in addition to receiving medical care while in Rochester?

REPLY

I started with Mayo Rochester in November 2021 with hope. They did find SIBO but thats not the cause of all this pain. So far they have been unable to find the cause. I have been on two week long visits where all testing was completed and then meeting with doctors for treatment plan. They pretty much washed their hands of help when they identified the SIBO. I was told my situation is too complicated and to seek local treatment. Been there done that. Thats why I went to Mayo. So long story I have an $11,000 bill that insurance didn’t cover, and health remains the same. Undiagnosed and untreated. I hope you have a wonderful experience but I was really let down with same answers and no road to healing. I was sure they were the answer and they were not. The facility is gorgeous.

REPLY
@regalrottweilers

I started with Mayo Rochester in November 2021 with hope. They did find SIBO but thats not the cause of all this pain. So far they have been unable to find the cause. I have been on two week long visits where all testing was completed and then meeting with doctors for treatment plan. They pretty much washed their hands of help when they identified the SIBO. I was told my situation is too complicated and to seek local treatment. Been there done that. Thats why I went to Mayo. So long story I have an $11,000 bill that insurance didn’t cover, and health remains the same. Undiagnosed and untreated. I hope you have a wonderful experience but I was really let down with same answers and no road to healing. I was sure they were the answer and they were not. The facility is gorgeous.

Jump to this post

Regalrottweilers, how disappointing that so far there have been no answers. Might the Pain Rehab Center be an option for you?

I think you might wish to see this discussion and ask questions here:
- Questions about Mayo Clinic Pain Rehab Center https://connect.mayoclinic.org/discussion/status-of-mayo-clinic-pain-rehab-program/

REPLY
@regalrottweilers

I started with Mayo Rochester in November 2021 with hope. They did find SIBO but thats not the cause of all this pain. So far they have been unable to find the cause. I have been on two week long visits where all testing was completed and then meeting with doctors for treatment plan. They pretty much washed their hands of help when they identified the SIBO. I was told my situation is too complicated and to seek local treatment. Been there done that. Thats why I went to Mayo. So long story I have an $11,000 bill that insurance didn’t cover, and health remains the same. Undiagnosed and untreated. I hope you have a wonderful experience but I was really let down with same answers and no road to healing. I was sure they were the answer and they were not. The facility is gorgeous.

Jump to this post

@regalrottweilers I had to look up "SIBO" and this Mayo link explains that it can be caused by a slowing of the passage of food and waste through the intestines.
https://www.mayoclinic.org/diseases-conditions/small-intestinal-bacterial-overgrowth/symptoms-causes/syc-20370168
I know because of the work that I do with my physical therapist, that constrictions or adhesions can affect the intestines and slow them down. Even pelvic alignment affects this if you have an inflare of the hip bones toward your belly. The pelvis is jointed which allows for movement of the bones during birth, but because major muscles connect to the pelvis, it can twist it or pull it out of alignment which can put pressure on the intestines passing though the abdomen. That may be an avenue to explore. My therapist does myofascial release which stretches tight tissue and tight tissue can cause pain. Here is our discussion about MFR. You wouldn't need a specific diagnosis to do this therapy. The therapist can assess with their hands the pattern of tightness in the body and follow that pathway to release it. It may take several sessions or weeks/months for results depending on how tight the body is. It is like peeling off the layers of an onion to find out what the next layer brings. I have had a lot of success with MFR.

Myofascial Release Therapy (MFR) for treating compression and pain: https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

There is a provider search at http://mfrtherapists.com/

Has your evaluation included any physical therapy work?

REPLY
@loribmt

Good morning @kista77 What wonderful news for you! Mayo Rochester is sort of a home away from home for me so I’m happy to help you out. I’m posting a few links below to the most often asked questions. From you comments to Colleen, you’ve been already doing some reading in the forum to get ideas and making notes. Let’s see if these offerings are of help to you.

– How to get the most out of a visit? http://mayocl.in/2n5eXSH
– First visit to Mayo: Traveling alone http://mayocl.in/2hgasVG
https://connect.mayoclinic.org/discussion/what-are-your-accommodation-recommendations-when-coming-to-mayo/
https://www.mayoclinic.org/patient-visitor-guide/minnesota/concierge-services
https://www.mayoclinic.org/patient-visitor-guide/minnesota/hotels-lodging?_ga=2.195758508.1027096109.1611755425-618629067.1611755425

– Tips: Traveling to Mayo to get medical care safely during COVID-19 https://connect.mayoclinic.org/discussion/your-tips-traveling-and-getting-medical-care-safely-during-covid-19/

Will you be traveling alone? Do you have any specific questions?

Jump to this post

Hi Lori, thank you so much for this information! Luckily my mom is retired and able to come along with me for my trip.

REPLY
@jenniferhunter

@kista77 I think you are in for a treat, not only for the excellence in medical care, but also for some of the interesting things you can see while in Rochester if you are up to it. The best place that I found to stay near the campus with the Gonda & Mayo buildings is Candlewood suites because they have full kitchens in the room, are close to Mayo, but not so close as to be more expensive. I discovered this from speaking with the Mayo Concierge services (free) and the hotels in walking distance do cost more. Most hotels have their own shuttles to the Mayo campuses (including St. Mary's Hospital) and you can park on one of the Mayo parking decks that they call "parking ramps". You have to pay each day and if you move the car to another ramp, but it is reasonable. Parking fills up, so get there early in the day. You can buy a pass for several parking days that might save some money now or on a future followup visit. Connect member, Lawrence @lmindela is from the Concierge services.

Rochester parking information
https://www.mayoclinic.org/patient-visitor-guide/minnesota/parking
As you drive across Wisconsin and cross the Mississippi, it is very scenic with hills and bluffs above the river and I have seen eagles circling there. From that point, it is about an hour to Rochester through farm country and you wonder how there will be a small city out there, but there is and it is completely surrounded by farms and summer cornfields. Each time I have visited, I've discovered something new to me, like the statue garden across from the shuttle drop off entrance at the Gonda building. I took a photo sitting with the statue of the Mayo brothers on the steps there. There is art everywhere, in elevator lobbies, waiting areas, etc and they do give tours, but currently tours are discontinued because of Covid protocols. Often someone may be playing a piano in a lobby.
https://newsnetwork.mayoclinic.org/discussion/the-nurse-at-the-piano-and-a-story-of-hope/


Another thing on my "to do" list is a tour of the mansion of Charlie Mayo. Tours are run by the historical society and will be resuming on March 19th.
https://www.olmstedhistory.com/mayowood
There is also a small Mayo history museum in the area between the Gonda and Mayo buildings (which are connected). It may be closed due to Covid protocols, but you can ask.

We all come to Mayo for a medical reason, and when you get there, you realize how special it is because you walk into an atmosphere of hope and healing. That is why the art and music is ever present. It gives you a level of comfort and can distract you from your worries. I see Lori has already shared some great resources. I can tell you that I love coming to Mayo. I think you will too.

Is there something you would like to do in addition to receiving medical care while in Rochester?

Jump to this post

Thank you so much Jennifer for this information! Hopefully I will be able to take the tour as it looks beautiful! I am in a lot of pain right now in my hips and knees so it’s hard to walk too far. We are staying about 7 miles away from the Mayo. We need a dog friendly hotel for my moms little dog. I will have to double check if they have a shuttle.

REPLY
@regalrottweilers

I started with Mayo Rochester in November 2021 with hope. They did find SIBO but thats not the cause of all this pain. So far they have been unable to find the cause. I have been on two week long visits where all testing was completed and then meeting with doctors for treatment plan. They pretty much washed their hands of help when they identified the SIBO. I was told my situation is too complicated and to seek local treatment. Been there done that. Thats why I went to Mayo. So long story I have an $11,000 bill that insurance didn’t cover, and health remains the same. Undiagnosed and untreated. I hope you have a wonderful experience but I was really let down with same answers and no road to healing. I was sure they were the answer and they were not. The facility is gorgeous.

Jump to this post

I am so sorry to hear this. I pray that you find out the cause to your pain. I worry that they will not figure out mine either and I am so scared to have to continue to live like this forever. I am so weak and drained. Thank you for your response and I pray that you find out the cause of your pain.

REPLY
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