Should I go to Mayo?

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

bellski
Regular Member


Date Joined Apr 2008
Total Posts : 499
   Posted 6/10/2008 3:14 PM (GMT -7)   
Hey all,  My husband was thinking he would like me to get a second opinion, even if I do not have the dysplasia (hope to get results Thurs. or Fri.).  His concern is me staying on medication for my whole life.  He is only concerned because he cares.  I personally am afraid to not be on it.  I have told him about how much I have learned from this site and he justs thinks that is great but a second opinion can't hurt.  What do you think?  Do you know any superb doctors at Mayo in MN? Maybe there is a wonderful Chicagoland doctor to get a second opinion from.  Any suggestions?  I live in the south suburbs, but can travel to the city if needed.  Thanks for any input, Bellski
Lori (Bellski)-age 43 from Illinois
Diagnosed February 2008 with Ulcerative Proctitis, possible dysplasia
Currently: symptoms have subsided, awaiting biopsy results for dysplasia
Medications:  Asacol 400mg X 6, Cymbalta 20 mg X 1, Canasa (during flares) Vitamins:  Calcium 600 + D X 2, One a Day Women's X 1, Citrucel,
High fiber diet
"I thank God that  I found this website!"
 


slim18996
Regular Member


Date Joined Apr 2008
Total Posts : 99
   Posted 6/10/2008 4:56 PM (GMT -7)   
I see no harm in multiple opinions.  If you are in the Chicago area you might want to check into the Cleveland Clinic also.  It would have to be about the same distance as the Mayo in Rochester.  The one thing about multiple opinons is if there is a contradiction with doctors on a treatment or diagnosis then you have a good place to start your research.  As far as a good doctor to go see, do a search of this site and I am sure some have spoken of doctors they have seen at both places.  Hope this helps.
 
John

Total Colectomy with End Ileostomy May 27th, 2008


ellaann
New Member


Date Joined May 2006
Total Posts : 15
   Posted 6/10/2008 5:35 PM (GMT -7)   
I live in Chicago and have experience with docs at Northwestern and U of Chicago. Either way, you can't go wrong.

quincy
Elite Member


Date Joined May 2003
Total Posts : 30078
   Posted 6/10/2008 11:58 PM (GMT -7)   
If you can afford to do it, definitely consider it.
q
*Heather*Status: mini flare Dec 28... tapered to every 4th night
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol (6 daily) + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotic 3(Natural Factors Protec) bedtime + 1 (Primadophilus Reuteri) occasionally
~multi-digestive enzymes as needed ....zymactive 3 - 5x daily
~Ranitidine,Pariet (reflux) Effexor XR 75mg;  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!


UC Dude
Regular Member


Date Joined Aug 2005
Total Posts : 438
   Posted 6/11/2008 4:04 AM (GMT -7)   
Mayo rocks. They are the gold standard for care in my opinion. Go if you can insurance wise etc.
 


bellski
Regular Member


Date Joined Apr 2008
Total Posts : 499
   Posted 6/11/2008 4:14 AM (GMT -7)   
Thanks, my insurance will cover it. I'll difinately think about it.
Lori (Bellski)-age 43 from Illinois
Diagnosed February 2008 with Ulcerative Proctitis, possible dysplasia
Currently: symptoms have subsided, awaiting biopsy results for dysplasia
Medications:  Asacol 400mg X 6, Cymbalta 20 mg X 1, Canasa (during flares) Vitamins:  Calcium 600 + D X 2, One a Day Women's X 1, Citrucel,
High fiber diet
"I thank God that  I found this website!"
 


seconder
Veteran Member


Date Joined Jun 2008
Total Posts : 610
   Posted 6/11/2008 4:48 AM (GMT -7)   
If I were in Chicago, I wouldn't go to the Mayo Clinic for a second opinion.  For the most part, medical care is fairly standardized and there is probably someone close to home who can offer a valid second opinion.  If I were expecting to hear the diagnosis was all a big mistake and that I could stop taking medications and be well, I would probably be setting myself up for some sort of disappointment. 
 
If I had severe uc complications, I might look into a larger, regional medical center like the Mayo Clinic.  Until then, there is certainly someone closer to home who can provide more convenient, consistent, continuous care.

bellski
Regular Member


Date Joined Apr 2008
Total Posts : 499
   Posted 6/11/2008 5:01 AM (GMT -7)   
Thanks, I may consider University of Chicago too. Personally, I just hate going to doctors. I usually avoid it at all costs. Oh well, I will do what I need to. If my biopsy results show dysplasia....I will probably go to Mayo and Univ, of Chicago. Thanks fo the resposes. Bellski
Lori (Bellski)-age 43 from Illinois
Diagnosed February 2008 with Ulcerative Proctitis, possible dysplasia
Currently: symptoms have subsided, awaiting biopsy results for dysplasia
Medications:  Asacol 400mg X 6, Cymbalta 20 mg X 1, Canasa (during flares) Vitamins:  Calcium 600 + D X 2, One a Day Women's X 1, Citrucel,
High fiber diet
"I thank God that  I found this website!"
 


UCinNC
Veteran Member


Date Joined May 2007
Total Posts : 528
   Posted 6/11/2008 5:46 PM (GMT -7)   
steve hanauer at U Chicago is one of foremost GIs. a little old school, but definitely just as reputable as Mayo. u chicago is good in general for GI
30/Female/NC
Pancolitis dx 3/07
9 Colazal a day
150mg Imuran/day (was steroid dependent, reached this dose 9/07)
Rowasa in PM once/week (my GI says research shows once/week helps maintain remission)
Getting married October, 2008!!!!


UC Dude
Regular Member


Date Joined Aug 2005
Total Posts : 438
   Posted 6/11/2008 6:54 PM (GMT -7)   
seconder said...
I wouldn't go to the Mayo Clinic for a second opinion. For the most part, medical care is fairly standardized


Disagree. Places like Mayo see rare things everyday like your family practice Dr. sees sore throats. There is no place on earth I would rather go if I had the choice. Saying medical care is fairly standardized is like saying all cars drive the same. They do all drive, but clearly are not the same. This is my opinion.
 


bellski
Regular Member


Date Joined Apr 2008
Total Posts : 499
   Posted 6/11/2008 6:59 PM (GMT -7)   
Thanks. I have heard a lot of great things today about u o chic. I am glad I posted this question. Thanks for all of the specific doctors listed at U of C and Mayo. I'll decide after I get my test reults. You all have been GREAT. THANKS! Bellski
Lori (Bellski)-age 43 from Illinois
Diagnosed February 2008 with Ulcerative Proctitis, possible dysplasia
Currently: symptoms have subsided, awaiting biopsy results for dysplasia
Medications:  Asacol 400mg X 6, Cymbalta 20 mg X 1, Canasa (during flares) Vitamins:  Calcium 600 + D X 2, One a Day Women's X 1, Citrucel,
High fiber diet
"I thank God that  I found this website!"
 


seconder
Veteran Member


Date Joined Jun 2008
Total Posts : 610
   Posted 6/12/2008 6:15 AM (GMT -7)   

Interesting perspective, ucdude.

If I had a rare complication of uc, I might consider seeking out a regional powerhouse, but I'll guess most people with uc have plain old uc (so to speak).  There are competent (if not excellent) doctors in Chicago who can provide a standard second opinion which is what it seems Bellski is asking in her original.

I would not buy an M6 to drive the five miles back and forth to work.

And, if I had a rare complication of uc, I think I'd still look for care within a reasonable home range for consistency and convenience if nothing else.  Surely there are competent (if not excellent) doctors in Chicago.

I would not buy a Rolls Royce if the only mechanic was a six-hour drive away.

If seeking local care meant I could spending an afternoon relaxing at Millenium Park or Lincoln Park Zoo instead of a stressful drive to the Mayo Clinic to be told to keep taking my meds, I'd choose the fun.  Better for my health, I'd think.

Here's the thread Old Hat mentioned.  Makes for interesting reading:

http://www.healingwell.com/community/default.aspx?f=38&m=1040845

Just my two cents.

 


Sara14
Veteran Member


Date Joined Mar 2007
Total Posts : 4034
   Posted 6/12/2008 9:58 AM (GMT -7)   
If you go to Mayo Clinic, be prepared for very long wait times, having to talk to a fellow before you get to see the doctor, and having to stay in Rochester for 3 to 5 days so they can schedule you for follow-up appointments. Everything the Mayo Clinic doctor told me was stuff I had already read in my own research or had already been told by my other GI. It was a waste of my time, but I may go back there if I had a really bad flare that my GI couldn't help me with..
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


bellski
Regular Member


Date Joined Apr 2008
Total Posts : 499
   Posted 6/12/2008 10:53 AM (GMT -7)   
Thanks for the input. I will probably just go to Univ. Of Chic. unless I get bad results about the dysplasia. Then I will go to both Univ. of Chic. and Mayo. My family is big on Mayo. But, I do see the benefits of having a doc close by for follow up. If we do go to Mayo, we would stay in the hotel and stay for a few days. But hopefully won't have to. I like my doctor I have now too. Take Care, Lori Bellski)
Lori (Bellski)-age 43 from Illinois
Diagnosed February 2008 with Ulcerative Proctitis, possible dysplasia
Currently: symptoms have subsided, awaiting biopsy results for dysplasia
Medications:  Asacol 400mg X 6, Cymbalta 20 mg X 1, Canasa (during flares) Vitamins:  Calcium 600 + D X 2, One a Day Women's X 1, Citrucel,
High fiber diet
"I thank God that  I found this website!"
 


Old Hat
Veteran Member


Date Joined Feb 2007
Total Posts : 5151
   Posted 6/12/2008 5:08 PM (GMT -7)   
Bellski-- a Website suggestion. Since your hubby is pushing for the 2nd opinion: why not ask him to read Salix Pharmaceuticals Newsletter Website for IBD (Archive)???? Starting in 2004 the top U.S. IBD gastros have been contributing articles there on major aspects of UC & Crohns such as meds, diet, lifestyle, travel, etc. I'm sure he can find the rationale there for your staying on Asacol to maintain remission! It would be nice to put his mind at ease w/o your having to travel to another doctor's office, undergo more questioning & probing, etc., etc. if you don't really NEED a 2nd opinion at this point. U. of Chicago IBD gastros are participating in these newsletters, too-- another reason to take a look. / Old Hat (nearly 30 yrs with left-sided UC; currently on 3 Colazal daily for maintenance of remission)

bellski
Regular Member


Date Joined Apr 2008
Total Posts : 499
   Posted 6/12/2008 5:23 PM (GMT -7)   
Thanks Old Hat, I'll looking into that right away! (:
Lori (Bellski)-age 43 from Illinois
Diagnosed February 2008 with Ulcerative Proctitis, possible dysplasia
Currently: symptoms have subsided, awaiting biopsy results for dysplasia
Medications:  Asacol 400mg X 6, Cymbalta 20 mg X 1, Canasa (sometimes) Vitamins:  Calcium 600 + D X 2, One a Day Women's X 1, Citrucel, Probiotics
High fiber diet
"I thank God that  I found this website!"
 


bellski
Regular Member


Date Joined Apr 2008
Total Posts : 499
   Posted 6/12/2008 5:34 PM (GMT -7)   
I just found the article Old Hat, and I printed it out. And I really appreciate it, this is perfect to show my husband! As I've said before, this website is wonderful. Thanks again, Bellski
Lori (Bellski)-age 43 from Illinois
Diagnosed February 2008 with Ulcerative Proctitis, possible dysplasia
Currently: symptoms have subsided, awaiting biopsy results for dysplasia
Medications:  Asacol 400mg X 6, Cymbalta 20 mg X 1, Canasa (sometimes) Vitamins:  Calcium 600 + D X 2, One a Day Women's X 1, Citrucel, Probiotics
High fiber diet
"I thank God that  I found this website!"
 


expecting226
Regular Member


Date Joined Jul 2007
Total Posts : 402
   Posted 6/12/2008 5:48 PM (GMT -7)   
Bellski - Old Hat's article is indeed great, and I am certain it will help you and your husband to make the best decision for you. I still wanted to throw in my own two cents, though...

My own opinion is that it is always a good idea to get a second opinion. Anyone with any disease who has the ability to get a second opinion, should do so. Doctors aren't superhuman. They do make mistakes. IBD is certainly not a black and white disease. There is lots of grey. It is always beneficial to seek a second interpretation.

My next opinion is... go to the best doctors you can. If you can afford to and are able to, travel to the best. Why not? It is your health! I live in Cleveland and go only to the Cleveland Clinic. Thankfully, I have good health insurance that allows me to do so. Why would I settle for second best when I don't have to? Regardless of the severity of your disease, you should seek out the best physicians you can.
Wearing many hats: Mother, Wife, Daughter, Professional, Sister, Friend
 
Current Medications:
- Asacol (4 pills, 3x per day)
- Rowasa (1 enema daily, as needed)
- Folic Acid (1 mg, 1x per day)
- Calcium (600 mg, 2x per day)
- Multi-Vitamin (1x per day)


bellski
Regular Member


Date Joined Apr 2008
Total Posts : 499
   Posted 6/12/2008 6:40 PM (GMT -7)   
Thanks expecting, I appreciate that advice too. I do have a question. I wonder how do they know it is ulcerative colitis? Does it look a certain way under the microscope? The reason I ask is because my recent flexsig, he said my colon looked healthy and normal, so I said, do I still have UC? and he said yes, Ulcerative proctitis. That's when I wondered, how do you know. I might post that question. I feel like I ask too many questions. Thanks all, Bellski
Lori (Bellski)-age 43 from Illinois
Diagnosed February 2008 with Ulcerative Proctitis, possible dysplasia
Currently: symptoms have subsided, awaiting biopsy results for dysplasia
Medications:  Asacol 400mg X 6, Cymbalta 20 mg X 1, Canasa (sometimes) Vitamins:  Calcium 600 + D X 2, One a Day Women's X 1, Citrucel, Probiotics
High fiber diet
"I thank God that  I found this website!"
 


Katmom
Veteran Member


Date Joined Mar 2008
Total Posts : 1202
   Posted 6/12/2008 8:12 PM (GMT -7)   
Sorry I can't answer your last question. Usually the Colonoscopy and biopsies are the deciding factors when diagnosing.
I am in Chicago and from the So. burbs. Get out of there...get to U of C or Northwestern, --- U of C has world class UC doc's. Any one of them will get the group's collective brainpower(don't expect to get S. Hanouer any time quickly though).
On another note, I saw that you have a high fiber diet listed....we were told to stay LOW fiber while having any sort of issue. Perhaps we can regain fiber in remission, but not quite there yet. Even an apple is taboo. Wonder why your GI thinks differently. Thoughts?
Daughter,14 diagnosed 1-08 w/ UC .learning from you all.
Rowasa, Asacol, Prednizone 50mg, major flare, Hosp. @U of C, Comers. IV steroid, no food, then low residue, home.
Now, began mp6, beginning taper of Pred, now 45mg, horrible acne, moon face, and fearful of future.
trying probiotics, Omega 3, and keeping up with doc visits.


bellski
Regular Member


Date Joined Apr 2008
Total Posts : 499
   Posted 6/12/2008 8:23 PM (GMT -7)   
I don't know why he said high fiber, my inflammation is under control now so it is probably fine. I go to Dr. Lou from Oak Lawn. Thanks for the input, I will definately look into it. I might not be in any hurry to get my second opinion so maybe I could wait for that Dr. Hanouver. You think he's the best? I hope your daughter gets well and in remission soon. It's so hard being that age and to go through this too. Well, she will be much stronger for going through this.
Thanks again and take Care,
Bellski
Lori (Bellski)-age 43 from Illinois
Diagnosed February 2008 with Ulcerative Proctitis, possible dysplasia
Currently: symptoms have subsided, awaiting biopsy results for dysplasia
Medications:  Asacol 400mg X 6, Cymbalta 20 mg X 1, Canasa (sometimes) Vitamins:  Calcium 600 + D X 2, One a Day Women's X 1, Citrucel, Probiotics
High fiber diet
"I thank God that  I found this website!"
 

New Topic Post Reply Printable Version
Forum Information
Currently it is Tuesday, February 20, 2018 10:23 AM (GMT -7)
There are a total of 2,931,232 posts in 321,614 threads.
View Active Threads


Who's Online
This forum has 160349 registered members. Please welcome our newest member, gooby.
317 Guest(s), 8 Registered Member(s) are currently online.  Details
nccajun, tennisplayer, Michael_T, Lynnwood, FamilyGuy, Happier!, Aerose91, yakingmom