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Changing GI doctor at Mayo Clinic
I've had GERD for 15 years-and it's been controlled with PPI's. A year ago in November-overnight my world changed and I started getting all kinds of new symptoms I've never had-a lot match LPR symptoms, I've now learned. I was able to get into Mayo at Jacksonville-which is 5 hours away from me. Since March I've been back and forth several times and had a ton of testing done. My GI dr is Dr F in GI and she's an actual well known doctor there, not a PA or NP. I've made a ton of lifestyle and food changes on my own since learning about LPR and believe that's what I'm dealing with. She has only pushed medicine at me and requested testing. She's never asked about diet/food/had me tested for any food things, etc.
She doesn't agree that I'm dealing with LPR and says Mayo doesn't recognize LPR because it's so 'new' and there's not enough research behind it. Even when I've given her info and discussed what I'm going through-she disagrees. I've also had 2 colonoscopies in a short time frame at her request and she wants to another in March because she said it's not thorough enough. However, the dr who did the colonoscopy at Mayo said everything was fine and I did not need a repeat for 5 years. The GI dr told me she wants me to start taking Milk of Magnesia, basically for the rest of my life, even though I'm having bowel movements daily. She thinks I'm still constipated and that's what could be causing issues. She has NEVER once talked to me about food or lifestyle. In fact, when I discussed with her that I was trying Dr. Aviv's acid watcher diet, she laughed and said it wouldn't work. I also hired a private dietician who specializes in GI health on my own and she again laughed and said it was worthless. At my last virtual appt the dietician requested to be at the meeting and she was-but the GI dr was so rude to her and wouldn't acknowledge her at all. She's rude to me as well, condescending, and I feel uncomfortable to bring up anything.
Just yesterday I went on my own to my local ENT about my LPR symptoms and he talked to me for a full hour about everything and was SO supportive! He also acknowledged that LPR was very new in the medical world and he said I'll tell you what I know and be honest about what I don't know. He said I was the most knowledgeable patient he's ever worked with and really supported everything I was doing.
I feel like I'm at a standstill with my GI dr. She's wanting me to have a 3rd colonoscopy that another dr at Mayo said I didn't need (all in a 6 month's time frame), she's not supportive or acknowledging anything I'm doing, I don't agree with taking milk of magnesia daily for the rest of my life, and now she's just pushing me off to Rheumatology because she doesn't have an answer-even though my symptoms are clearly pointing at LPR. I can't go to anyone in my local area-I have gone to the 3 GI dr's in my area before Mayo and they are useless.
My family and my gut tell me to ask for a different GI dr at Mayo. I don't know how that works, or if they even will. Also, she's a dr, not a PA or NP, so I fear getting someone so new that knows nothing. For example, the ENT I've seen at Mayo is a NP and is supposed to be working with an actual dr on my case, but she's not-and her testing and advice has been useless.
Should I request a different dr? How would I go about doing that, if I do?
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The GI department has a problem.
They have 1.8 on trust pilot. 1.9 on Google and 1.0 from me.
I am suspect for Pancreatic Cancer.
I got a mcrp from prenuvo showing cbd dialation of 8mm and pancreatic duct dialation at 4mm. Did have result read till end of march start of May tried for Mayo May 29 had a gi consult with HA. Day after consult tried to switch. She hadn't read anything in my file, I had sent alot of poop pictures up to day before. She asked me how my bowels movements had been. I was shocked, then I just let it out. My stomach is huge pit belly like, I look 7 months pregnant. I mentioned pancreatic cancer, and she said at consult she thought My digestive issues were from doxycycline. I immediately knew she was not the DR. For me. Next day I called Mayo asked to switch. Called back a few days later was told I cant switch just give her a chance. This caused extreme emotional distress.
Have tried 4 times now to switch DR.s . Paitient experience is a joke.
All the whiel having to do all my testing for suspect pancreatic cancer with her. She does not explain anything or even reply.
The DR could release you as a patient I heard, so they are affecting you by keeping you, it is retaliatory, which seems to be a theme that just surfaced in other areas just last week. She put me at the back of the line on images ( retaliatory) didn't order an image originally that looked at the pancrease.
I had to fight call ever day to get my image moved up then moved up again. I had to call and call and call and complain just to to get an eus. Now just a paper in my portal no real explanation, no opinion, other then to quit smoking, and I want a fecal elaste test, and pancreatic cancer test, and just need her signature been waiting since end of last week. No response. ( retaliatory).
Because they wont let you switch DR.s I have limited my other care and reached out to other well know institutions. I boight myself the fecal test today $205.00 on request a test and alymase which I have no test for at all on all the blood work ordered 6 vials of blood, and no alymase? No Lipase to alymase ratio because no alymase included in blood test. She did trst for Celiac s DISEASE in my blood, and my eus biopsy. Iron binding not good, iron is low, bun is low, nuetrolphis high...high ldl, high hdl, borderline on alot of the blood. I got myself a urine test a ct from Kingman. Billirubin in my urine!!+ protien 30ml, ketones in urine, urine is amber color. I have floating poop, undigested food, Constant upper right at rib pain mostly after eating a little sharper. Ive been giving no diet plan, no diagnosis, no opinion, and no medication not even pancreatic enzymes. This is now after 2 mcrp, ct with contrast, a ton of blood work, an egd and eus.
So I've been forced to help myself, got bcp-157 peptide, pancrease peptide, methylprednisolone 4mg, ordered inside tracker, cancergaurd, genomics, and called avantec for the pancreatic cancer early detection test $1500.00
Have the kit on the way, but need a phycians signature and she has not responded.
( retaliatory? )
I currently am still trying to switch put in another request through paitent services and made a complaint with the ethics board.
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1 Reaction@swearwords, this sounds very distressing for you. Even the username you chose underlines your frustration.
I strongly recommend that you contact the Office of Patient Experience at Mayo Clinic. The Office of Patient Experience can address concerns about your care experience at Mayo Clinic via phone, email, letter or online form.
Mayo Clinic Office of Patient Experience
https://www.mayoclinic.org/about-mayo-clinic/patient-experience
Phone: 844-544-0036 (toll-free)
Email: opx@mayo.edu
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3 Reactions@colleenyoung Thanks yeah I did that day 1.
Consult May 29th.
Called to switch May 30th office of Paitent experience.
June 19th first response to a series of messages sent to the doctor from may 30th - June 19th no response till June 19th and this keeps going on and on and right now actually trying a 4th time.
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1 ReactionWhich Mayo are we talking about? And Where?
It is hard to have faith or a good relationship with a doctor who acts as you describe.
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1 ReactionI gave up on Mayo. I am not sure which facility you went to (they are independently ran from my understanding), but at this point won't go back. I live in Alaska so flying to and from three times was costly. The doctor (female) was focused from day 1 I had 'elderly onset Crohns'. I kept having to fly back for test after test and there was not ever a sign it was Crohns, The second visit was a capsule endoscopy that did not indicate Crohns or anything of concern. I had that done in January. My follow up from the cap endo wasn't until MAY!! In February I was frustrated and reached out to her through the portal. She messaged me 'good news - it's not Crohns. I'll visit with you in May.' So, in May when we had our teleappt, she then said she still thought it was Crohns. I shared with her she messaged me in February and said it wasn't. I was so confused. Then she said she wanted a colonoscopy and biopsy to rule Crohns out 100%. When I asked her what the next step was if it didn't turn out to be Crohns, I was told 'we will cross that bridge when we get there'. So third trip down. While I was waiting for the procedure to begin I could hear the doctor (not the doctor I had been meeting with) talking to a nurse as they were looking at my records, as to 'why is she having this done'. Hmmmmm. Then the doctor came over to me and asked me to explain why this was ordered. My mind was a bit blown! The colonoscopy and biopsy showed no Crohns. Again, I get a message in my portal "no Crohns" and nothing else. There is no suggestion of what to look for next. No plan to try to help with my stomach issues and mesenteric panniculitis diagnosis (the reason I was sent to Mayo in the first place). Guess we aren't crossing any other bridges. As a result I sought out a functional medical practitioner and have found out my immune system is attacking my stomach, intestines and mouth (mucus cells), so I have a roadmap for recovery. I know not every doctor is perfect, but the experience with her was frustrating, confusing and very disheartening. I will say the rest of the Mayo team, nurses, staff and the clinic itself was amazing. I just don't understand how when a doctor focuses on one thing, and that thing isn't what someone has, that they don't move forward to either try to figure out what else it could be, refer to another doctor or specialist, etc. Best of luck.
@mcharlesfrancis
Pheonix/Scottsdale
@aksandralynnI feel the same way about the scheduling people at Mayo. Top notch. The breast clinic is great, the imaging staff 👏.
But the GI department has big problems.
We as paitents need to stand up.speak up. Our Brain 🧠 knows we are sick before we do. We should have aa right to ask for images we want, pick our doctor its a must. There has to be mutual trust.
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1 ReactionOne thing I learned during my own journey is that the different Mayo campuses don't necessarily make treatment decisions together.
When I was told locally that my tumor was not resectable, I already had an appointment scheduled at Mayo Clinic Rochester to be evaluated by one of their pancreatic surgeons.
The answer was not the same. The surgeon in Rochester spent considerable time reviewing my scans and discussing my case. I believe it is always worth getting a second opinion from a high-volume pancreatic surgeon because different specialists may have different perspectives and levels of experience with complex cases.
A second opinion doesn't mean you don't trust your doctor—it means you're making sure every possible option has been explored. Even if the recommendation is the same, you'll have confidence that you've done everything you can. And sometimes, as in my case, another team may see things differently.
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