Visiting Jacksonville location as a first time patient

Posted by rfaz1989 @rfaz1989, Jul 15 10:50am

Hi, I will be visiting the Jacksonville location as a first time patient next month, and I (like many others here that I have seen through my searching) am wondering what exactly to expect?

1. I have some sort of digestive issue that has either been properly diagnosed and not properly treated, or not properly diagnosed, thus "Calling in the big guns" at MC. So I have an appointment with a digestive doctor. My mom is convinced its some sort of autoimmune issue, as we have a lot of autoimmune history in our family (her, my sister, and myself). Should I expect, upon mentioning that, that I will get tested for and also see a rheumatologist? Or any other specialists, if the gastroenterologist doesn't find anything in the realm of her expertise? Or will that more or less just get me sent on my way if she sees no serious gastro concerns?

2. Does anyone have recommendations on hotel accommodations? Right now we are planning on being there for a week, which may be overkill. I saw a bunch of stories in my searching of people that had similar plans, but were able to cut their hotel stay short without being charged for the unused days. If anyone has a good recommendation in the area where they had a similar experience, I would really appreciate it, just in case.

3. Lastly, has anyone had experience specifically with the Inflammatory Bowel Disease clinic in Jacksonville? How was your experience?

Thank you!

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

Oh my , you sound like me … plus or minus a symptom or so . It’s living hell 11 years.
6 th Gastro in 2 states .
A few in NC , lots of tests when we lived there 6 years. 6-7 diagnoses. Tried everything under the sun .

Then moved to Space Coast , FL 5 years ago .
Saw a local GI for a year, redid many tests , same outcome. Then she sent me to Mayo . Took 7 months to get in .
Did yet another Endoscopy w/ endo flip / long SIBO test / an Entroscopy C scan of small intestines.
Still same diagnosis pretty much . Plus $3,500 out of pocket for co/ pays and Air B&B 15 min away on Jacksonville Beach 3 nights .
That was 2021 .
He wanted me to go on Remeron antidepressant and do speech therapy. I was like , what ???
Flash forward to last summer .
Still suffering every single day even now and even more harsh symptoms .
I went to a New lady Gastro in Orlando, she got all the records.
We did endoscopy and colonoscopy in Mar again . She listed many different things but then basically said Oh , you just have prominent IBS- D and Anxiety and it’s Functional.
I have Gastritis, Esophagitis, GERD , 1000’s deep wet belching everyday , non stop churning gut , diverticulosis ( have had one bad bout diverticulitis that I stayed home suffering from a few months ago ), IBS - D , small hiatal hernia. Now I can barely eat lately anything ( we never eat out or order in , no fast food , low everything) . I’m throwing up every morning last few months , chronic fatigue has taken over too .
I do take med for anxiety, low dose anti depressant ( just recently that ), but I’m still doing so poorly.
I barely leave my house anymore.
No energy at all .plus need to stay by bathroom a lot .
My poor husband, I’m 62 , he works 3 days at office , 2 days remote . He has to see and hear about this daily for over a Decade .
He’s so good but I’m sure it’s exhausting for him .
My kids are grown and married and busy , I try not to burden them too much . I barely even talk on phone .
They live 2 hrs south.
I’m also at my wits end like you .
May you have much better luck at Mayo . It’s a lovely huge campus and they are very coordinated there .
Keep us posted . 🙏.

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@rfaz1989

This sounds exactly like my current mindset...I have a deep distrust of doctors. When I was younger I had multiple misdiagnoses on sports injuries that ultimately cost me college sports, now this new saga of mine.

I'm almost as skeptical of the RA as I am the Antiphospholipid because that diagnosis was based mainly on my symptoms and my reaction to Prednisone (I feel like a God when I'm on Prednisone. It's sickening how much better it makes me feel).

Ill also note that I did one week of carnivore in all of this and that was actually the best I've felt throughout the entire process, but it's so hard to stick to it. I'm going to revisit that after my appointment next month. MC are some of the best at what they do, so I just want to let the doctors do their thing before I try any more of my own fixes. I'm really curious about celiac despite my previous tests though..

Jump to this post

My integrative Dr had me do an anti inflammatory Diet (AIP). I did that for 93 days (I was to do it for at least 30). I felt amazing and lost the pitting edema in my legs and 30 pounds to boot.
I eliminated all sugar and processed food. All dairy. All nuts and Seeds. No nightshades. No grains. I reintroduced a new food gradually, every 3 days. I was able to find my triggers and have eliminated them.
Now, 4 year later, due to a huge amount of stress and I am an emotional eater, I fell off the wagon and started consuming cakes, pies, cookies, chips, etc. I am inflamed again. I just finished a 48 hour water fast over the weekend. I am now eating heavily plant based, with very little meats.
I was on Prednisone as well and felt great! Glad to be off that as it caused adrenal/cortisol issues for me.

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Just back from JAX campus. Used points at Marriott on the beach. We Uber'ed everywhere. About a $20 to $30 fair to Mayo off Jacksonville beach hotels. We found it was cheaper to Uber from airport and Mayo. Our hotel was $30 to park car daily plus tax. $32. We found it easier with Uber. Uber's know all the ins and out of driving and the Mayo Clinic campus's. We did have only one issue with an Uber to Mayo was he did not speak English, but he knew actually where were going. The Mayo Campus is lovely. We felt like we were checking into a 5 star hotel. Waiting areas are very peaceful and comfy. With the lobby music...it felt like I was getting a massage with orange aroma therapy. We always showed up early for appointments and we always got in to appointment prior to the appointment time.

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@rfax1989
When I first came to Mayo in 2006 there were only two options for saying. Mayo had an on site motel and also on their property a Courtyard by Marriott. Since then several other motels have built in area with most prevalent a Residence Inn. I like Residence Inn if you area staying somewhere for any length of time.

The RI is very close a couple of blocks away. I have stayed at the Marriott and it is a very good motel directly across from Davis Building and easily walkable to every treatment office and buildings.

Mayo Clinic is outstanding. Take time to walk around and see all the reseach centers. Also Mayo has several restaurants and eateries as well as even a Starbucks.
Good Luck

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Expect courteous staff and very on-time apps. . Expect to be doing a lot of walking from bldg to bldg. . You may be asked to submit to a few tests. Springhill suites by Marriott is close by and offers some discounts for mayo patients. Good insurance helps to get travel and lodging reimbursements. Hth

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