Good GIs at Mayo Clinic (MN)?

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Sara14
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Date Joined Mar 2007
Total Posts : 4509
   Posted 2/8/2008 1:50 PM (GMT -6)   
Anyone know of a great GI at the Mayo Clinic in Rochester, MN? I may be switching again (for the second time, unfortunately). Mayo is pretty close to where I live and I know they're rated one of the best hospitals in the country. Hoping they also have some good GIs. Thanks.
24 years old
Diagnosed with UC March 2007; yet to go into remission
Asacol 4 tablets 3x/day
Rowasa (generic) - daily
Nature's Way Primadophilus Reuteri 1/day; Chewable multivitamin; Metamucil; Viactiv (Calcium and Vit. D)


Kelsie
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Date Joined Jan 2008
Total Posts : 60
   Posted 2/8/2008 5:46 PM (GMT -6)   
Sara14, I am kind of surprised you have been fighting to reach remission for almost a year and haven't tried any other meds? Or perhaps you have but they aren't listed? Mayo is a great place and has been ranked #1 in the country in GI since US News started ranking, I believe. Here is a link:

http://health.usnews.com/usnews/health/best-hospitals/search.php?spec=ihqgast&

If you aren't happy with your current GI, I would suggest a trip to Mayo. It may be the best thing you ever did. Life is too short to be wasting time not feeling well if there is help. Hopfully you have insurance that will cover it. Also, Mayo is always doing studies, so maybe you could get involved in one of them if you are interested.

Good luck!

Kelsie

Old Hat
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Date Joined Feb 2007
Total Posts : 5187
   Posted 2/8/2008 7:11 PM (GMT -6)   
Sunanda (Susie) Kane is one of the gastros at Mayo-MN. She went there last yr from U. of Chicago Medical Center. You'll find lots of info. about her just by Googling her name. It really makes sense for you to have a consultation with a gastro who subspecializes in IBD. You should be able to achieve a true remission with better advice on meds. That was the reason I had to leave my 1st gastro, a generalist. They usually are oriented toward the stomach & gall bladder/liver, but don't know as much about intestinal function/IBD. / Old Hat (nearly 30 yrs with left-sided UC ... [etc.])

basa0806
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Date Joined Feb 2005
Total Posts : 2103
   Posted 2/9/2008 12:29 AM (GMT -6)   
Here is a link to bios about GIs at Mayo
http://www.mayoclinic.org/gi-rst/doctors.html
Mayo is an amazing hospital (I hope to do my clinicals at Mayo in 3 years!) so I'm sure you'll be able to find a decent doctor.
If you woulldn't mind driving 45 minutes to St.Paul/ Minneapolis Minnesota GI has some really good doctors too.
Sam
Diagnosed in September 2004
In remission since January 2006
Currently on Asacol, amitriptlyine, ortho tri-cyclen lo, some immodium
"If you don't like it, change it. If you can't change it, change your attitude"
Maya Angelou


Another UC wife
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Date Joined Jun 2007
Total Posts : 2111
   Posted 2/10/2008 5:00 PM (GMT -6)   
My husband goes to the Mayo Clinic in Jacksonville, FL and I am EXTREMELY impressed and pleased with what they have done so far in conjunction with our local GI. If you have the option of going there I wouldn't hesitate one bit. If you are at a standstill with your current course of treatment you need another opinion and intervention. If for nothing else to confirm what your current Dr is doing for you.

My husband's local Dr was fine and doing everything by the book but also suggested and wanted him to get some additional intervention. By the time we got into the Mayo clinic the imuran was starting to turn things around. The Mayo still helped in changing some of the meds, increasing the dose and really did an amazing thorough job going through all my husband's medical records. His Dr at Mayo feels confident that his local Dr is providing good care and consequently we see her regularly and go to Mayo every 6 months for follow up as they are both treating him in conjunction with each other. We are lucky I think.

They are the ones who found a note about the H Pylori that had been overlooked in some of his records which we knew nothing about!

It was worth the inconvenience, additional expense and time to have them involved in his care as it was also very reassuring.

Good Luck.

61 yr old male~Colitis 1st diagnosed Jan '05-cleared up within a few wks. Flared again in May '06 (now UC) & hospitalized 5/07-currently heading towards a remission. Osteopena of spine from prednisone DX 8/07  Oct 07 feeling quite normal most days.  150mg Imuran  Zero mg prednisone   12 Asacol, Lidocaine Hydrochloride Jelly 2%,multi vitamin, iron 1X day, DanActive, chewable calcium, fiber capsule 1x day, Prilosec 20mg, enalapril 10mg, glipizide 5 mg, zocor 40 mg, baby aspirin, (Fentanyl pain patch 50mg 72 hrs  Morphine Sulf 15 mg twice daily)Cortifoam enema PM, Canasa suppositiry AM, folic acid 1mg, Fosamax 1x month


Sara14
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Date Joined Mar 2007
Total Posts : 4509
   Posted 2/10/2008 9:28 PM (GMT -6)   
Thanks for all the advice everybody.

Kelsie - No, my doctors haven't given me any other meds to try except the Asacol and Rowasa. I have been flaring mildly since around June of 2006 (I was severely, then moderately flaring from Feb. to around May 2006) and my doctor said he didn't think it was bad enough to move on to harder drugs. But, as you can see, I am not too happy with him! I think my insurance will cover any GI I want to see, so it shouldn't be a problem to go to Mayo, but I will check to make sure.

Thanks again everyone. If anyone else knows of a good GI at Mayo, please let me know. =)
24 years old
Diagnosed with UC March 2007; yet to go into remission
Asacol 4 tablets 3x/day
Rowasa (generic) - daily
Nature's Way Primadophilus Reuteri 1/day; Chewable multivitamin; Metamucil; Viactiv (Calcium and Vit. D)


Sara14
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Date Joined Mar 2007
Total Posts : 4509
   Posted 2/15/2008 2:22 PM (GMT -6)   
I just called Mayo and made an appointment. They said they could get me in already next week. I was shocked that there wouldn't be a long wait! I said I'd rather wait until March so I can make sure I have all my records with me, so my appt. is March 19. I didn't even need to get a referral. I wasn't expecting to make an appt. today so I didn't really research all the GIs yet, but I asked the appointment secretary who she would see and she also asked her co-worker and they both said Ed Loftus, who subspecializes in IBD. They have a whole center for IBD in their gastro. dept. I am pretty excited! I think I may still ask around a bit and see if my PCP can recommend someone there. I am supposed to see my current GI on March 11, but will probably cancel that. I don't see any point in driving an hour to see him.

Old Hat - Is Kane supposed to be one of the best? I don't see her name on the Mayo Web site list of doctors.

Thanks for the support, guys.
24 years old
Diagnosed with UC March 2007; yet to go into remission
Asacol 4 tablets 3x/day
Rowasa (generic) - daily
Nature's Way Primadophilus Reuteri 1/day; Chewable multivitamin; Metamucil; Viactiv (Calcium and Vit. D)

Post Edited (Sara14) : 2/15/2008 12:49:28 PM (GMT-7)


Old Hat
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Date Joined Feb 2007
Total Posts : 5187
   Posted 2/15/2008 2:48 PM (GMT -6)   
Yes, Sara, she's right on top of things IBD-- does a lot of continuing ed for practicing doctors as well as patient forums, publishes articles, etc. Not long ago I came across the online transcript of a talk she gave at an IBD patient forum in Boston a couple yrs ago-- alas, right now I don't remember which Website it appears on. The one hassle a UCer can run into going to the "top dogs" of IBD-- they tend to treat the worst cases of Crohn's, so it may be hard to get in to see them, or they may not want to take on the more routine cases of IBD due to "been there, seen that"-syndrome. (They're looking for excitement-- cases really hard to treat that challenge them!) I do believe someone mentioned Loftus in another thread here a good while back, but it may only have been a passing comment. But I don't see any harm in asking about Kane's availability for consultation. *Jen* went to see her counterpart at UCSF & is very satisfied with their interactions so far. / Old Hat

Sara14
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Date Joined Mar 2007
Total Posts : 4509
   Posted 2/15/2008 2:58 PM (GMT -6)   
Thanks for the info. I don't see Kane's name listed as a GI at Mayo. Loftus has lots of research articles posted on PubMed that I've been browsing through.
24 years old
Diagnosed with UC March 2007; yet to go into remission
Asacol 4 tablets 3x/day
Rowasa (generic) - daily
Nature's Way Primadophilus Reuteri 1/day; Chewable multivitamin; Metamucil; Viactiv (Calcium and Vit. D)


Sara14
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Date Joined Mar 2007
Total Posts : 4509
   Posted 2/15/2008 3:00 PM (GMT -6)   
Oh - they also told me to fast after midnight the night before my appt. I've never had to do this before. I asked if it was because they'd be scoping me or something, but the appt. desk person said the fasting is useful in case they want to run any blood tests. I am not getting another scope. That is the one thing that really worries me about switching GIs again. I do not think it's good for my body to get all these scopes though - already had 3 in the past year.
24 years old
Diagnosed with UC March 2007; yet to go into remission
Asacol 4 tablets 3x/day
Rowasa (generic) - daily
Nature's Way Primadophilus Reuteri 1/day; Chewable multivitamin; Metamucil; Viactiv (Calcium and Vit. D)


MitzMN
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Date Joined Feb 2007
Total Posts : 640
   Posted 2/15/2008 8:10 PM (GMT -6)   
You will be amazed, I am sure, Sara, at the level of care you will find at Mayo. Good luck!

Mitz (of Mankato, MN)
Sporadic proctitis since about 1985. Mother had J-pouch surgery 1983.
DX'd with clostridium difficile in 2000. Pred, two courses of Flagyl, then Vancomycin finally got rid of it. 2001 colonoscopy dx'd left-sided UC. . Treated with prednisone, Rowasa, Asacol. Asacol not working, switched to Imuran. Three small flares since in 2002, 2005, and 2007, brought under control with steroid and Rowasa enemas. Lap Chole performed October 26, 2007, after gall bladder attack in June, '07.
Daily meds: 100 mg Azathioprine and 225 mg Effexor XR (for chronic, longstanding depression), many vitamins and Primadophilus Reuteri


Old Hat
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Date Joined Feb 2007
Total Posts : 5187
   Posted 2/15/2008 10:17 PM (GMT -6)   
Hey, Sara, I looked at Mayo-MN Website & found Sunanda Kane listed, also a William Sandborn who does IBD. I'm kind of surprised, though, to see some of the undistinguished medical schools that many listed doctors graduated from! A least Kane & Loftus did their medical studies/residencies at major urban institutions; I think that's very important because those places treat more IBD patients in general. RE fasting from midnight on prior to office visit: my internist has always required this for comprehensive blood tests. My IBD subspecialist gastro does not require it for blood tests, being mainly interested in the ESR (sedimentation rate). I can understand your anxiety over the prospect of more scoping; can you bring copies of your latest scope reports along to Mayo the day of office visit? You might also think about asking on the Crohn's Forum whether any member there has ever consulted gastros at Mayo-MN. / Old Hat

Sara14
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Date Joined Mar 2007
Total Posts : 4509
   Posted 2/15/2008 11:24 PM (GMT -6)   
Thanks, Mitz!

Old Hat - I see Kane now. I was looking at the doctors listed by subspecialty and I can't find her under any of those. I'll stick with Loftus for now. He looks like the best one on the list in the IBD subspeciality to me. Yeah, I was surprised at some of the med. schools some of their GIs had graduated from, too. Yes, I will bring copies of all my UC-related medical records (they even asked me to do this on the phone) since diagnosis to my appt. so hopefully that will eliminate the need for a scope, at least for a while. Good idea to also ask on the Crohn's forum. Thank you for your advice. It is greatly appreciated, as always.
24 years old
Diagnosed with UC March 2007; yet to go into remission
Asacol 4 tablets 3x/day
Rowasa (generic) - daily
Nature's Way Primadophilus Reuteri 1/day; Chewable multivitamin; Metamucil; Viactiv (Calcium and Vit. D)


EricaM
Regular Member


Date Joined Jan 2007
Total Posts : 184
   Posted 2/15/2008 11:40 PM (GMT -6)   
Sarah

Susie Kane was my doctor before she left University of Chicago and I agree with Old Hat she is one of the top docs in the field of IBD. She speaks all over the country and she has a focus on women's issues and IBD. Last year she gave a great lecture at the CCFA's conference on women and IBD. There is a live teleconference for patients, caregivers, and healthcare professionals on Thursday March 6. This educational event is presented by Dr. Sunanda Kane, Associate Professor of Medicine at the Mayo Clinic College of Medicine. There will be a Q&A session with
Dr. Kane after the presentation. See the CCFA's website for more details.


http://www.ccfa.org/

I miss doctor can very much not only is she a great doctor but she is one of the most caring and genuine people you will ever meet. The first time I met her I was in the hospital and I was scare, upset, and in extreme pain. She came in sat down next to me held my hand while discussing options for treatment and trying her best to put me at ease. I wish I went to her sooner because by the time I transferred to University of Chicago I was so sick I wasn't responding to drugs of any kind and surgery was unavoidable. I am now in remission and drug free since September 2007 (Dr. Kane left UofC end of May 2007). I just sent her a letter telling her the good news.

I hope you are able to get into see her and if you do tell her Erica "rookie of the year" says hi! (My first year in real estate I was rookie of the year and she left me a message on my voice mail asking if the was the home of the "rookie of the year?")

Erica
Erica
Crohn's and Ostomy in 2004


Sara14
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Date Joined Mar 2007
Total Posts : 4509
   Posted 2/16/2008 1:43 PM (GMT -6)   
Hi Erica,

Thank you for sharing your experience with Dr. Kane with me. She sounds like a great doctor and great woman. I'm glad you had such a good experience with her, but sorry she left and you can't see her anymore. That's great you've been in remission since September though!

I read about that teleconference, but didn't realize Kane was the one presenting it. I really want to listen to it, but I'll be at work at the time. Hopefully there will be a transcription somewhere afterward.
24 years old
Diagnosed with UC March 2007; yet to go into remission
Asacol 4 tablets 3x/day
Rowasa (generic) - daily
Nature's Way Primadophilus Reuteri 1/day; Chewable multivitamin; Metamucil; Viactiv (Calcium and Vit. D)


chicagoatc
Regular Member


Date Joined Sep 2006
Total Posts : 133
   Posted 2/16/2008 2:22 PM (GMT -6)   

  I hope this isn't overkill but I saw Dr. Kane at Mayo in MN and was so happy!  I felt like she understood exactly what I was saying and I feel so lucky to have gotten to see her.  I didn't know anyone at Mayo and just happened to get her.  She was enpathetic and thought of a great game plan.  I was just so tired of being sick all the time!  I left there with such hope! :) Good luck to you and I hope you have a great experience!

Becky


29 years old; diagnosed since 1997 (but I've had it forever)
Current meds:
-Prednisone 10 mg!
-Re-trying Imuran; I'm at 75 mg now...but it's making me so tired!
-Asacol 12/day
-Failed Remicade (8/06-8/07)
-Calcium + Vitamin D(for my steroid-affected bones)
-Prenatal vitamins (for the extra stuff, not for pregnancy)
 


EricaM
Regular Member


Date Joined Jan 2007
Total Posts : 184
   Posted 2/16/2008 5:11 PM (GMT -6)   
Hey Becky-

She's is great! Are you in chicago? I was planning on going to the CCFA conference on March 29th...it's in rosemont near o'hare. If you ware going perhaps we can meet up sometime.

Sara-

I hope you like Dr. Kane......I miss her and she gave me a great referral at the University of Chicago (Dr. David Rubin) who is taking great care of me.

Erica
Erica
Crohn's and Ostomy in 2004


chicagoatc
Regular Member


Date Joined Sep 2006
Total Posts : 133
   Posted 2/16/2008 11:44 PM (GMT -6)   
Erica,
 
I'm in the suburbs....I'm not sure if I'll be at the conference.  I was just looking at the brochure.  I'd love to meet up with you there.  My email is in my profile on here... you can email me.  Just make sure you have healing well or something in the subject.
 
Becky
29 years old; diagnosed since 1997 (but I've had it forever)
Current meds:
-Prednisone 7.5 mg!
-Re-trying Imuran; I'm at 100 mg now...but it's making me so tired!
-Asacol 12/day
-Failed Remicade (8/06-8/07)
-Calcium + Vitamin D(for my steroid-affected bones)
-Prenatal vitamins (for the extra stuff, not for pregnancy)
 


Sara14
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Date Joined Mar 2007
Total Posts : 4509
   Posted 3/18/2008 6:06 PM (GMT -6)   
My appointment at Mayo is tomorrow morning. I am seeing Dr. Ed Loftus (I had already made an appt. with him before some of you suggested Dr. Kane). Hopefully he'll be better than my last two GIs. I will let you guys know how it goes.
24 years old
Diagnosed with UC March 2007; yet to go into complete remission
Asacol 4 tablets 3x/day
Rowasa (generic) - nightly; Canasa (1,000 mg) in the morning
Nature's Way Primadophilus Reuteri 2/day; Chewable multivitamin; Metamucil; Viactiv


dakotagirl
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Date Joined Apr 2006
Total Posts : 3402
   Posted 3/18/2008 7:22 PM (GMT -6)   
Good luck!
Pan-colitis and GERD diagnosed May 2003
Osteopenia diagnosed Feb 2006
 
Asacol 12 per day,  Azathioprine 75mg, Aciphex, Effexor XR, Forvia and a Probiotic
 
Co-Mod for the UC forum:  Keep HealingWell running smoothly:  www.healingwell.com/donate


Old Hat
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Date Joined Feb 2007
Total Posts : 5187
   Posted 3/18/2008 7:23 PM (GMT -6)   
Good luck, Sara! How long a drive is it from where you live? Are you taking a healthy snack along? (Since you have to fast before bloods.) / Old Hat (nearly 30 yrs with left-sided UC ... [etc.])

Sara14
Veteran Member


Date Joined Mar 2007
Total Posts : 4509
   Posted 3/18/2008 7:44 PM (GMT -6)   
Thanks, dakota and Old Hat.

Old Hat - The drive is only a little over an hour. That's a good idea to bring a snack for after the appointment. I was going to try to find a restaurant, but this way I'll have something to snack on just in case I don't find anything. Good to see you're still around, by the way. I would have missed your posts and advice far too much if you left. =)
24 years old
Diagnosed with UC March 2007; yet to go into complete remission
Asacol 4 tablets 3x/day
Rowasa (generic) - nightly; Canasa (1,000 mg) in the morning
Nature's Way Primadophilus Reuteri 2/day; Chewable multivitamin; Metamucil; Viactiv


Old Hat
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Date Joined Feb 2007
Total Posts : 5187
   Posted 3/18/2008 8:26 PM (GMT -6)   
And thanks for your kind words-- I would certainly miss you, too. At the time I was 1st diagnosed (1980), I was still on the youngish side but through college & self-supporting, so I can especially relate to your situation. It took me a while to find a reliable gastro, but eventually I got into crisis over meds anyway & then pursued treatment with a subspecialist GI listed with the local CCFA. It helped me immensely and I'm hoping that Mayo will likewise improve your condition. At least you now know that if Loftus doesn't pan out, consultation with Kane is still a possibility there. / Old Hat

Sara14
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Date Joined Mar 2007
Total Posts : 4509
   Posted 3/20/2008 1:36 PM (GMT -6)   
My Mayo experience was not impressive. I was 5 minutes late for my appointment because I got lost trying to find parking near the clinic and they gave my appointment time away to someone else. So, I was bumped back an hour. I forgot to bring a book to read and they had no good magazines and no newspapers lying around to read so I was bored out of my mind. Then, I finally got taken back by a nurse and she spent about 20-25 minutes reviewing all my medications and some of my other medical history with me, even though I just spent over an hour prior to the appt. filling out about 10 pages of paperwork for Mayo which covered all of the questions this nurse asked me. Then, I had to wait about another 45 minutes before I got to see someone doing a fellowship, not even the doctor I made my appt. with. He spent a decent amount of time with me, but most of it was just him talking through my past medical records with me, which he had just finished reading through. I already knew everything he was telling me. Then he told me about all the med. options, which I already knew about.

Then I had to wait another hour in the little doctor room before I got to see the "real" doctor. By this time, I was so tired, crabby, hungry and thirsty (since I had to fast since midnight the night before) and just wanting to get the heck out of there. The doctor seemed knowledgable, but I didn't really like him as much as my other one. He said my next step was probably azathioprine, but maybe we could try a few courses of pred if my symptoms get bad. I asked him about Cortifoam and he told me recent studies show that it doesn't work any better than Rowasa. Anyone know anything about these studies?

They didn't really tell me much of anything. They wanted me to schedule more appts. They tell you you're supposed to stay there for 3-5 days so they can schedule things throughout the week, but they didn't tell me this when I originally scheduled my appt. I don't have the time, money or patience to wait around there for 5 days. Plus, the doctor said I should call the fellow with any questions, not him. They did some blood work for various things, but didn't tell me what, except one to see if I metabolize azathioprine, which I'm taking....I am almost in remission. They said I could start tapering my Rowasa. I don't understand why these GIs keep telling me to taper completely off the rectal meds. If I only have rectal inflammation right now, shouldn't I taper off my oral meds first and the rectal meds later?

I don't think I will go back there again. At my other GI's office, I've never had to wait more than 5-10 minutes to get in and they would only take an hour at most. I had to sit at Mayo for almost 4 hours yesterday. Sorry to complain so much. I guess I will just keep doing my own research and suggesting my own meds/dosages to my old GI. Kinda sucks, because I don't really know what I'm doing. I wish I could find a GI who would lead me in the right direction, but I'm sick of looking.
24 years old
Diagnosed with UC March 2007; yet to go into complete remission
Asacol 4 tablets 3x/day
Rowasa (generic) - nightly; Canasa (1,000 mg) in the morning
Nature's Way Primadophilus Reuteri 2/day; Chewable multivitamin; Metamucil; Viactiv


Old Hat
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Date Joined Feb 2007
Total Posts : 5187
   Posted 3/20/2008 3:48 PM (GMT -6)   
What a bummer, Sara! I can imagine that you wouldn't want to go back after such an ordeal. I recall your saying that the secretary recommended Loftus to you; I have major reservations about taking that kind of advice-- based on my own gastro's location. The staff there glows with appreciation for one doctor who wins all kinds of collegiality awards. He's in charge of the ambulatory endoscopy unit, where patients are treated like auto parts on a factory assembly line! (Which he obviously couldn't care less about!) My gastro, in contrast, is not that popular with secretaries & other support staff, but really intervenes to make patients more comfortable & will yell, if necessary, to get what we IBDers need. I'm sorry you had to go thru all that with no gain to show for it. Wonder if anyone else posting here or on the Crohn's Forum could give you any personal recommendations for other IBD doctors in your general area. Or would there be an IBD gastro nearer to your family's home whom you could see periodically, while keeping the current doctor closer to your town? / Old Hat
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