tortuous colon plus rectal and sphincter disfunction

I called the Gastroenterology and Hepatology scheduling office at (507) 284-2511, Rochester, MN, and asked for an appointment in 2020. You can also request an appointment online: https://www.mayoclinic.org/appointments, or call the Mayo Central Scheduling office at (507) 538-3270.

I've had Blue Cross Blue Shield and United Healthcare at the times I've been seen and treated there and they are considered in-network with almost every care plan.

Mayo is #1 in the US in GI and they see so many cases and medical complexities that they are more familiar with treatment options and approaches. They have a team approach to everything, so they pull care providers into your care team when they see multiple systems in play. They have never let me down and I'm very thankful for the care I've received there.

I'm so sorry. You've had a lot. When we have complex issues, which you do, it's always best to get as many opinions as you need to feel that you've exhausted all options and are getting the most medical benefit possible so that there is at least some relief.

I hope the info helps - and I'd love to know how it goes for you if you decide to go to Mayo.

I filled out the Mayo Clinic application for an appointment and got a message to call them today. They said they do not honor Kaiser insurance. They do not even accept self pay. I am devastated.

emstorm, here is a bit from some Reddit folks that had trouble with Kaiser. Maybe you'll get an idea from it:

Does anyone have issues with Kaiser doctors not helping?

"California - Southern

Three weeks ago I went to see the doctor with a list of issues that I had been experiencing including severe sinus headaches and congestion for two months, fatigue, nausea anytime I was on my feet for more then a couple of minutes, severe cramps, blood clots the size of a half dollar and cycle happening twice a month and not skipping the next month, shooting pains down my leg and numbness to my hands. He ordered me to take blood work, and that was it. After a couple of days I realized that he ordered the same blood work he has ordered for me every time I had a visit which I believe was a lipid panel. Looked through all previous test and seen that not once did they ever indicate what the test results mean, I am not a medical professional and did not understand why it indicated trends regarding the results. He did not schedule any further test, he did not give me any recommendations on how to handle the issues, what the issues could be. They just took my copay for the visit and lab work and did nothing for me. I sent an email and scheduled a phone appointment, which was verbally advised it was scheduled for 05/02/24 but they put it in their system as 5/03/24, with another provider only to get a call to reschedule it. I reschedule it verbally for 05/06/24 (today), only to see that it shows scheduled for tomorrow 05/07/24. The incompetence is crazy, and the lack of remorse is worse. I told the doctor that I know my body and I know that something doesnt and has not felt right the past couple of months and I am not getting anywhere with them try to find the cause of my issues. Has anyone had any experience with Kaiser that you are not getting any type of care?

"2mo ago
I don’t mean to sound discouraging, but while you have energy, use it to be as loud as you can be to any Dr who might listen. Having more than one symptom at a time seems to be their breaking point. The idea is to “look like” they’re doing something about it by ordering endless tests or handing out referrals where you get to only bring up the one symptom related to that specialist’s area of work. (I’ve seen six.) At the beginning of each appointment, if I tell them the symptoms I’m having, they ask “which one I’d like to focus on today.” This happened with primary care as well as urgent care and ER which I needed several times for my constellation of symptoms."

" My situation started last June. I filed a grievance and it went nowhere. I just had an appt for a routine test and told that doc my story. They said they were sorry for what I’ve been going through this last year and said they’d take me as a new patient to help me put it all back together. Our first appointment is this week. I should I be happy, and I am, but it’s ELEVEN months since it started. I hate that we have to fight so hard when we have the least energy to do so, but with what strength you have, be as loud as you can."

QuackersParty
•
"2mo ago
Idk if it’s the same in SoCal but in NorCal we can just change PCPs whenever we want. I went through like 3 doctors until I found a good one who actually cares, is willing to work the system, and refers me to other doctors who care. There’s still issues, but it’s a night and day difference with a doctor that hasn’t checked out."

2mo ago
"I second this. There’s crap providers both in and out of kp. Gotta do your work to find a decent doc, and then pray they are taking new patients…."

2mo ago
"Start filing grievances. Sometimes it’s the only way to go."

2mo ago
"100%. My introduction to KP as a new member in 2022 taught me that. Document everything: names, dates, what the doctor or their staff (or the Call Center) told you. Patient portal messages are good for that especially if a doctor is not responding, not addressing your concerns or delaying care. Briefly describe the situation then ask for their justification for not addressing the issue etc. Be specific, direct, concise and clear.

If you are not getting what you need, take all of your documentation and file Grievances.

More than any other healthcare provider I’ve experienced, with KP you have to be the squeaky wheel in order to get adequate, timely care.

Intelligent-Ask-3264
•
2mo ago
LOL. ALL THE DAMN TIME. Listen to labboy. Files those grievances, file complaints with the state insurance board. Push for second opinions. Switch PCPs when you can.

If applicable, a trick I learned when asking for something (like a test or referral) and being denied. Ask "show me in my chart where you are refusing my request". By law you are allowed to see your own medical chart, so dont let them use HIPPA excuses. Also, when something is charted in your record, it is permanent and cannot be removed. It can be altered, but the original information must stay in the record as well. So you may still not get what you want but theres now evidence that you asked and were denied.

labboy70
•
2mo ago
To OP, if you have patient portal access you can see what notes your physician documented under the Notes for that visit. I’ve found that’s very important not only for what u/Intelligent-Ask-3264 stated but also to make sure they documented what you asked AND that they didn’t incorrectly document comments/exam findings. Unfortunately, I’ve found that often (I’ve seen it with multiple, different physicians) exam findings and other things which absolutely did not occur during the visit are documented. If you see discrepancies, send an email to the responsible doctor and ask them to correct it. This is important because inaccurate information from one visit could be a problem for you later on.

It’s such a travesty that we, when we are sick, fatigued, and weakened have to use our precious little energy to fight the system from which we are supposed to be helped, and paying dearly with time and money for neglect in return.

I have similar issues and Mayo won’t take my insurance. I am sure others have the same issue.

My sentiments exactly. I am so worn out from it all. Whenever I seek help, the frustration overwhelms me and I feel myself slipping into depression. Life is too short so I focus on my blessings and the things that bring me joy. Not easy either.

Misreporting on records is a regular happening. And Medicare encourages/requires a portion of this.
It stinks and I don’t know what to do about it-government!

I am so sorry to hear this. They also have a foundation that assists with the care of patients who need assistance. I wish you all the best and I will be praying for an answer for you.

Mayo Jacksonville, FL , 3 years ago did 3 big tests on me after 7 months or more waiting on waitlist or to get in .
Spent over $3500 for co pay and 3 nights in Air B& B . They unfortunately could not help me either . Had many diagnoses but just suggested anti depressant or speech therapy!!! That was so disappointing ( after waiting so long ). I’m on my 6 th GI Dr. My newest the last year is 1 hr 15 min away in Orlando.
She redid the endoscopy- colonoscopy Mar 2024 w/ biopsies. I’ve been sooooo sick chronically daily 10 years. They poo poo so much of what they find . So suggested the anti depressant again . I took it 6 months and it didn’t help at all .
I do take 1 mg Klonipin in half daily now . Used to be infrequent. I can’t do much of anything outside my home 🏠 because all this . Barely can eat , hate food and now have nausea daily ( & throw up ) the little I try to eat .
I’ve done the whole spectrum of everything you can think of .
They just say ? Well we don’t know how to help you or a lot I’d also functional.
How are we supposed to live like this ? I’m 62 .
Started at 52 .

It breaks my heart reading about all your troubles. I am 80 and have had similar issues for over 10 years. I've seen seven GI specialists, each ordering a multitude of tests and each coming to different conclusions. Some just saying 'I don't know." When I said I was unable to cope with the stress of navigating the medical system, I was referred to a shrink who helped me file grievances but nothing came of it. I connected with a gal in social services who helped me make phone calls (I am deaf from chemotherapy) and that helped me cope with the navigation process but ultimately, nothing or no one has been able to help my physical condition.