Visiting Jacksonville location as a first time patient
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.
My first visit to JAX Mayo was great. I went to the breast clinic. You will be amazed at this place and the staff. I have never felt in better hands. My husband said he felt like we were at a resort rather than a medical clinic.
We stayed just 15 minutes away at Hampton Inn Jacksonville/Ponte Vedra Beach-Mayo Clinic Area on Marsh Landing Drive. It as right next door to a Mexican restaurant (we did not eat there as I have Celiac Disease and must avoid gluten) and is just down the road from a Target and Publix. It is an easy drive to Mayo. They have your typical free continental breakfast (waffles, eggs, bacon, yogurt, fruit, cereal). We did not eat at hotel. It is in a quite area and was not bothered by traffic noise or bright lights coming in room. Is is also close to the beach.
The hotel was clean, yet somewhat dated. The bed was comfy and water pressure was great!
What are your symptoms? I have multiple autoimmune diseases. I was dx with Celiac, which took them 3 years to diagnose back home! I had severe gastro issues along with other symptoms.
Make sure to have all your medical records if they do not already have them.
Editing to add: We stayed just 2 nights. I had 2 appointments in one day.
Thanks for replying! Did you rent a car for your travels, and did you find parking to be difficult (something else I've seen mentioned a handful of times)? That's one of the factors on whether we choose the on campus Courtyard or not, of course aside from price (looks pretty expensive..)
As far as my symptoms, 2 years ago next month I had diverticulitis for the first time, after a lifetime of typical IBS struggles. I actually ended up fainting that day, not knowing it was diverticulitis and thinking I was just really sick. That ended up being diagnosed as a vasovagal syncope. Ambulanced to the hospital, typical scans etc, antibiotics and went home the next day. Fast forward literally 1 year to the day (my ex's birthday both times) and I again had diverticulitis, this time I kind of knew what it was though and was able to act on it without fainting, however since that time I have fainted again, and have had several episodes of almost fainting. Since that second diverticulitis last year, I was repeatedly diagnosed with diverticulitis from August thru December, and put on antibiotics 8-10 times ( I truly can't recall the number, but they just kept throwing meds at me). Each time I would come off antibiotics, I would within 1-2 days start having symptoms again; constipation, and pain in my lower middle and lower left abdomen. It was just a rinse and repeat cycle. I tried fasting for multiple days. I tried week long liquid only diets. I was eating a really simple low fodmap diet (basically dry white toast and plain eggs). Absolutely nothing was helping so I started doing my own research. I saw a handful of interestingly relevant things, in particular on Reddit (/r/diverticulitis to start, which lead me to /r/sibo and /r/ibs). I started reading up on SIBO and I was a dead ringer for the symptoms, I begged my doctor to test, and low and behold, I was positive. I also begged for a colonoscopy because he and 4 other GI's before him were convinced I "just have IBS". After the colonoscopy I was also diagnosed with colitis...go figure. He decided to go for the SIBO first and put me on Rifaxamin (but not the second antibiotic you're supposed to also take, I believe its Flagyl). I didn't feel much different so he repeated it. After the second course I felt noticeably better, but not all the way, and for whatever reason he decided to completely abandon it and treat the colitis instead. He put me on mesalamine which I ended up having a serious allergic reaction to, and had to stop. He then put me on Budesonide which did help curb the pain, but NOTHING else at all, and in fact the symptoms I believe to be related to the SIBO have just been steadily worsening. The budesonide also led to me having crippling and rampant cramps in all parts of my body, so that's been fun. The cherry on top of all of this is I was supposed to have a followup with my GI tomorrow, but last week (Day before I got into Mayo Clinic, so that's kind of poetic) they called me to tell me he's on indefinite leave, and pushed my appointment to the end of September and put me with his PA.
So, my overall symptoms in short:
-Lower abdominal pain
-Constipation (have been basically relying on Linzess for months now)
-Horrible bloating and reflux
-Esophagitis or esophageal spasms (have had doctors diagnose both and each disagreeing with the other, so not sure exactly which, but really bad pain in my esophagus that takes hours and half a bottle of Mylanta to settle down)
-Trapped gas/belching, probably should have put this with the bloating, in truth
-And seemingly something wrong with my vagus nerve, which my research has shown is actually one of the top causes for any and all of these things...hard to know what came first though. Diverticulitis can lead to colitis or SIBO, and vice versa. Really chicken or the egg kind of thing
I've had colonoscopies and endoscopies so I don't think I have to fear the big C at the moment, but I'm just trying to get good treatment and and concrete answers at this point. My quality of life has been shattered. I'm in and out of work, lost a 4 year relationship, dealing with depression...the works.
Throwing on at he end as an edit: I HAVE been tested for Celiac, but as far as I know not within the last year. I do have RA and (supposedly) Antiphospholipid Syndrome (I say supposedly because sometimes it pops up on my blood work and sometimes it doesn't..). For my mom they are chasing what they think might be Lupus, and my sister has confirmed Epileptic Lupus and either Hashimotos OR Grave's Disease
@rfaz1989, congrats on the next step to finding answers. In addition to the helpful reply from @meeshodge, I think you will find these related discussions helpful as you prepare for your visit to Mayo Clinic in Jacksonville, Florida.
- How to best plan and prep for my visit to Mayo Jacksonville
https://connect.mayoclinic.org/discussion/how-to-best-plan-and-prep-for-my-visit-to-mayo-jacksonville/
- Lodging in Jacksonville, FL
https://connect.mayoclinic.org/discussion/lodging-in-jacksonville-fl/
— Visit to Jax. Mayo Clinic: https://connect.mayoclinic.org/discussion/visit-to-jax-mayo-clinic/
- Gluten free restaurants Jacksonville?
https://connect.mayoclinic.org/discussion/gluten-free-restaurants-jacksonville/
See all related discussions: https://connect.mayoclinic.org/group/traveling-to-mayo-clinic/?search=Jacksonville&index=discussions
@rozy288 @larryh123 @tra418 @fourof5zs @lindes @ees1 @nancy82415 @donnab213 @jkhkev may have further tips for you.
I am so sorry you are having so many issues. I know how aggravating it is to feel so bad for so long and not have definitive answers. I was diagnosed with 3 autoimmune diseases within months of one another (RA, Celiac and Hashimoto's). I began to distrust Drs (at least conventional ones). I do NOT have RA! The reason my ANA and Sed rate had stayed elevated for so many years was due to the inflammation in my body from Celiac! Once I went gluten free, all my symptoms disappeared and my labs returned to normal. I am so glad I refused the medicine they tried to get me to take at that time. Sometimes we have to advocate and stand up for ourselves. I finally sought an integrative Dr and haven't looked back. My Hashis and Celiac are now managed and I feel so much better.
I pray you find answers soon and get on the road to recovery fast!
Yes, we did rent a car from Enterprise, at the airport (we flew in from Austn, TX). It was one of the fastest and easiest pickup and returns we've had!
I forgot to comment on parking. At the breast center, there was a garage, there were several open spots. It was raining the day we went, so thankful for that. It was connected to building. There are several well shaded parking areas around the campus. I do remember seeing other parking garages as well.
We parked In Parking P.
https://mcforms.mayo.edu/mc1600-mc1699/mc1663-59.pdf
Ok, so I went and looked. The Mayo Clinic Gastroenterology and Hepatology Clinic is also in the Davis Building. So you will have access to Parking Garage P as well.
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..
Interestingly the scheduler said she couldn't get me into gastro, but I'm seeing Inflammatory Bowel Disease doctors. I'm wondering what the real difference is aside from maybe historical expertise between the doctors
I have been a pulmonary patient at Mayo JAX for close to 2 years and go there every 6 months. I've never had a negative or unpleasant experience. Every medical and non-medical person that I've encountered has been incredibly nice and professional.
I've stayed at the on-campus Marriott Courtyard each time, mostly for the convenience. It is definitely pricey but if you tell them at check-in that you are a Mayo patient they should give you a little discount. (or they used to) Sometimes parking can be an issue in the main, large lot and it can be a good little walk into any of the main buildings. Not good if it's inclement weather. Hunting a space reminds me of the parking lots at Christmas time. There is a parking garage attached to the Davis Building that I've not yet utilized.
As mentioned in the previous comments, there is a Hampton Inn not far from Mayo. There are several eating establishments in that area as well as the mentioned stores.
They are building a new Hampton near the Courtyard Marriott but I don't believe it's completed.
On the medical side, I'm glad you're seeing someone at Mayo. My best advice is you absolutely have to be your own best health care advocate. Ask questions!