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

Hi @nikkipooh79, welcome to Mayo Clinic Connect. I added your question to the Visiting Mayo Clinic group as well. You may find other discussions in this group to be really helpful. For example these ones:
- Tips for your first Mayo Clinic visit and tests/appt schedules: https://connect.mayoclinic.org/discussion/tips-for-first-dr-visit-and-testsappt-schedules/
- New Gastroenterology Patient going to Mayo Clinic in Roschester https://connect.mayoclinic.org/discussion/new-gastroenterology-patient/
- Your Tips on How to Get Off to the Best Start with a New Specialist https://connect.mayoclinic.org/discussion/your-tips-on-how-to-get-off-to-the-best-start-with-a-new-specialist/

Which Mayo Clinic are you going to Nikki?

I went to Mayo Clinic Jacksonville for testing in Oct . They only did the Covid test on Sunday , then schedule tests Mon - Friday .
My tests were 2 hours n Mon and bigger test on Tues . We stayed Beach side at VRBO condo for n beach in Jacksonville Bch w our two pups .
I had to wait 7 months to get appt and testing done . Unfortunately this was my last resort after 8 years , 5 Gastro Drs in 2 states and over 15 tests done ✅, 6 diagnoses. They still cannot help me . I did everything holistic and diet wise and RX . I’m not healed and they look at me as medical mystery now ?
I hate it , it’s robbed me of 8 years of my life and counting ….
I pray you get results and fixed !

@rozy288 ,
Could I ask please: What was your diagnosis after your Mayo appointment? And what was your follow-up/treatment plan? Do you go back to Mayo? I’ve been following your mystery and curious as to how you are doing.

Hi! I have my first appointment in march and she said to plan for 5-7 days of testing. My first question…do they do testing on the weekends? Or are we talking 5-7 business days? Also…is there anything you did or wish you had done for your appointment that I should make sure to do? Background:
I was diagnosed with Crohns 18 months ago, but have unexplainable pain and gas combined with constipation almost constantly. Always worse when I eat. My dr doesn’t like the look of my scans and he feels there is something mechanical or motility wise going on. But the surgeon refused to do exploratory surgery so he referred me to Mayo. I’m really hoping to get some answers and get my life back! 🥺🥺

Hi @nikkipooh79 - I have spent time at Mayo Jacksonville GI as well as once in Rochester.
My first impression was that the visit was so well organized- but still flexible if I needed another test or consultation.
I have stayed 4-5 days each visit. They don’t test on weekends.
I was traveling alone, so I chose to stay at the Marriott on the campus in Jacksonville.
In Rochester I stayed at the old Kohler hotel, attached to the clinic.
I was very pleased with each visit and I hope you will be too.

Hi! I have my first appointment in march and she said to plan for 5-7 days of testing. My first question…do they do testing on the weekends? Or are we talking 5-7 business days? Also…is there anything you did or wish you had done for your appointment that I should make sure to do? Background:
I was diagnosed with Crohns 18 months ago, but have unexplainable pain and gas combined with constipation almost constantly. Always worse when I eat. My dr doesn’t like the look of my scans and he feels there is something mechanical or motility wise going on. But the surgeon refused to do exploratory surgery so he referred me to Mayo. I’m really hoping to get some answers and get my life back! 🥺🥺

@pcon227 - Jacksonville was my main center - my doctor there referred me to Rochester for a second opinion. I saw Dr. Joseph Murray. He is THE expert on celiac disease and very well known. I felt honored.
This showed that I liked both centers- Jacksonville being able to get a second opinion from a world renowned expert!

No , no reason to go back to Mayo . The New Gastro Dr I got , did 2 televisits . Other people abs Dr. Did the 3 diff tests .
Had another 2 hr SIBO test , A Special CScan of Small intestines ( bowel), and another endoscopy w/ endo flip done by specialist that do that test . I’ve been diagnosed w/ Chronic Gastritis, Esophagitis, Class B GERD, Small Hiatal hernia, Diverticulosis, small flat polyps on my stomach lining. I belch over 2000 x a day or night . I eat so clean and healthy for years on end . I’ve tried over 50 Remedies, elimination diets, complete allergy testing including foods, Hypnoherapy, acupuncture, every pre and probiotic and every enzyme and everything on Amazon they make for gut health. I even got a medical marijuana card and tried some of the gummy‘s but hated the way it made me feel .
So I live on Ultra Pepto 8 yrs . 5 Gastro Drs and over 15 big and small tests . The Dr. At Mayo had same diagnoses in Oct , but had no reason why I’m sick after every meal and I blow up w/ so much gastric distress all the time . Then my intestines are so loud grinding that they wake me up in the middle of the night and then the belching and churning just are relentless. I even take Ambien 5 mg and melatonin to get to sleep and it wakes me up three hours later. Then fatigued during day from lack of sleep. Do my best to get up take a shower put my make up on do my hair do what I need to do around the house and run errands with my husband when I can but man it’s hard.
I also have an anti-anxiety medicine I take when needed. I hope this helps you understand, every day is a struggle. ;(

Hi! I have my first appointment in march and she said to plan for 5-7 days of testing. My first question…do they do testing on the weekends? Or are we talking 5-7 business days? Also…is there anything you did or wish you had done for your appointment that I should make sure to do? Background:
I was diagnosed with Crohns 18 months ago, but have unexplainable pain and gas combined with constipation almost constantly. Always worse when I eat. My dr doesn’t like the look of my scans and he feels there is something mechanical or motility wise going on. But the surgeon refused to do exploratory surgery so he referred me to Mayo. I’m really hoping to get some answers and get my life back! 🥺🥺

I'm with you in so many ways. In the past I've had 2 major diverticulitis infections, the last one I was on Augmentin for 6 lovely weeks! I also have hiatal hernia, had gallstones and had gall bladder removed and have had h pylori. Right now my problems are hemorrhoid related. Internal and external and anal fissure. Mornings are horrible and most mornings I'm in pain and can't go anywhere until at least noon. I've just booked appointments with a colon rectal specialist to try to find answers. Can't seem to find the right diet and fiber amount.

I, too, take Ambien for sleep and just started on an anti depressant for anxiety and depression just so I'm not in tears every day.

One suggestion for you... this has helped me somewhat and others in a huge way, look at Rachels Tea website online. Her father, Mike, developed a method of food eating that breaks down foods into 3 categories; starch, protein and water foods. He says, after being a patient with digestive problems, and his daughter, Rachel with digestive problems, we have too much acid in our digestive systems and not combining proteins with starches reduces the inflammation. I'm not a doctor, but I know this method of food consumption works for some. On the website is a free download of Mike's book "Pain Free Foods", and they have a facebook group as well where patients, like us, write in with questions and answers or help. I haven't gone into the method wholeheartedly, but I know there are a lot out there who swear by it. Keep researching!

I got turned down by Mayo clinic for an appointment. My gastro did a referral and sent records but they sent back a form letter saying they couldn't contribute to diagnosis/treatment. Sigh....