Confidence in Top Docs listing shot down

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Christine1946
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   Posted 5/5/2011 9:35 AM (GMT -6)   
     My surgeon was listed on the Top Docs list for colorectal surgeons in Philly.  Well, I happened upon a Philadelphia magazine the other day which listed the Top Docs in south Jersey and Philly.  Glad to see my surgeon is still there, however, so is the very first GI doctor I saw the day BEFORE I was admitted into the ER with ulcerative proctitis in 1998.  He performed a sigmoidoscope in his office and said everything looked fine rolleyes .  Yeah right.  Maybe with rose colored glasses.  My hospitalization lasted eight days and there is where I became the patient of the GI doctor who took care of me until my surgery last year.  So, guess the Top Docs list doesn't mean squat when looking for a doctor. 
     I want to add that I was satisfied with the surgeon I chose, but had I read that list before my surgery, I would have had my doubts..lol.

blueglass
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Date Joined Dec 2010
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   Posted 5/5/2011 9:43 AM (GMT -6)   
Just thinking of the tv show Nurse Jackie, where one of the doctors hired a PR firm to get himself on the top docs list.... devil is always in the details with those ranking things....
48 years old, female.
2004 dx indeterminate colitis. Back and forth between Crohn's and UC dx. Many drugs, minimal success.
2010-11 Crazy skin and eye complications, high fevers, bad flaring. Out of good drug options, tired of scary drugs.
Feb 2011 -- proctocolectomy with permanent ileolostomy; abscess, blood clot. Still healing, still glad for the surgery

CrohnsPatient
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Date Joined Feb 2008
Total Posts : 314
   Posted 5/5/2011 8:59 PM (GMT -6)   
you can always check the crohns and colitis foundation of america website, they list doctors that are supposedly well known and renowned in what they do. Although I find the list isnt complete in its entirety

seconder
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Date Joined Jun 2008
Total Posts : 610
   Posted 5/5/2011 9:59 PM (GMT -6)   
Docs pay to be included in the CCFA's listings, too.  It's been awhile since I've looked at it, but in the CCFA's print newsletter, docs who paid more got special recognition.
 
It's all in the fine print.
 
 

Another UC wife
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Date Joined Jun 2007
Total Posts : 2111
   Posted 5/6/2011 7:15 AM (GMT -6)   
I suppose these lists provide some insight but I always find researching with other people and the old fashioned "word of mouth" recommendations to be quite successful.

Of course every case is different and the success of others sometimes might not be exact in your case if there are complicating issues too. But I/we like playing the odds.

Christine if your situation persists to the point it really is interfering with your quality of life perhaps another surgery to correct it at some point? Last thing you want to think about I know but it is distressing to not feel as well as you could if taken care of. Good Luck.
64 yr old male suffered with UC & in May 06 had a severe flare & hospitalized 6 days...various prednisone treatments leading to steroid dependence and osteopenia, 12 asacol, 200 mg Imuran, failed remicade infusions Jan-May 2010 Dependence on pain meds. Made decision 6/10 to have surgery which was on 12/17/10 (total proctocolectomy & ileostomy - unable to have the j-pouch) and no longer in pain.

UC in Dallas
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Date Joined Sep 2007
Total Posts : 18
   Posted 5/6/2011 8:43 AM (GMT -6)   
Lists don't mean JACK!  I went to the "leading" GI doc in the southeast - he had conducted clinical trials for stem cell treatments for IDB, he was an active member of every Gastro organization you can think of (and held leadership positions with several of these), serves on the Board of Trustees for the GA Crohn's/Colitis Foundation, was a president of the Atlanta Gastro Club, was named the asst. professor of medicine for digestive diseases as well as the senior associate of medicine in digestive diseases at Emory University Hospital.  The list goes on.... My experience with this guy was disturbing - I sat in his waiting room for a minimum of an hour PAST my appointment time every single time I saw him, and another 45 minutes after the nurse finally put me in an exam room.  The first 4 appointments I spent trying to get him to listen to my concerns about medication options - but all he was concerned with was a kidney stone I had and sending me to another doc for some other blood tests that had nothing to do with my GI problems.  When he finally started addressing my Crohn's he had scheduled my 1st colonoscopy (with him), sent me home with the wonderful prep - which I suffered through only to get a call from him the next morning, an hour before the appointment, to tell me that he forgot to get a fecal sample which had to be tested before he could do the scope - so I went through the prep for nothing, and had to repeat it all again a week later.  After the scope he ignored my request to return to a medicine combo that had been somewhat successful with my previous GI and talked me into starting Tysabri - which is one MEAN and DANGEROUS drug, and after 9 months of infusions and ZERO benefit I returned to his office to demand a change.  I sat there, like normal, for 90 minutes past my appt time with a 103 fever (that his nurses knew about) and finally just got up and walked out.  The nurse chased me out and said I was next and I just told her I was sorry but it was waaaay too late for that.  I made it to the ground floor when he personally called my cell phone and left an apology on my voicemail, and a week or so later sent me a personal apology in writing.  I did respect him for that, but in the end this was my life and well-being that he was messing with - and likely messed up permenantly during the time he "treated" me. 
 
Sorry for the rant - but the point I wanted to make is for everybody to choose their doctor very wisely.  Don't be fooled by what's hanging on their walls, and if you have a bad feeling about him/her - for even a second - go see someone else, and someone else after that, until you find one that you're comfortable with.   DO NOT wait 9 months like I did just because the doc has an impressive resume and he acts like everything he's saying is 100% correct.  My lesson was learned a couple months after I left that doc.  I ended up having to have my entire colon down taken out because of the irreparable damage that had been done to my intestines after he had switched my medication and refused to listen to my input.  It was during one of my many trips to the ER due to massive stomach pain, when my intestine ruptured while I was puking (it was incredibly lucky that I was already in the ER when it happened).  It was the middle of the night so they had to wake up a surgeon and anesthesiologist to come in and do the surgery.  I think it was 4 hours that I had to lie there waiting with the ruptured colon, (which feels like a 10" chef's knife sticking straight through your stomach - and that's AFTER the morphine).  You ever heard those people that everyone in the whole ER can hear screaming "bloody murder"? - that was me the entire 4 hours.  I hurt so bad I didn't care what they were going to be taking out - I just begged them to put me OUT.  I spent a week in intensive care, and another 9 days in the hospital.   Now I have a permenant ostomy to live with.  TRUST ME - FIND A GOOD DOC - NO MATTER HOW MANY YOU HAVE TO VISIT!!!  Peopole usually don't buy the 1st house they see, choosing the right doctor is a much more important decision, don't settle with seeing just one.  I know cost can be an issue - but is it worth it to save $1000 and possibly end up like me?

Post Edited (UC in Dallas) : 5/6/2011 9:00:06 AM (GMT-6)


Another UC wife
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Date Joined Jun 2007
Total Posts : 2111
   Posted 5/6/2011 3:59 PM (GMT -6)   
Dear Dallas...what a horrible story and experience and end result. Very sorry for what happened to you.

Your advice is so on target. The main thing being follow your heart and "gut" and not only research your surgeon but try to get personal recommendations from others as well.

I know and realize that sometimes there are delays or emergencies that interfere with appointments. However, if it is a normal occurrence and inconvenience as you stated that is a red flag to me. Part of that could be he is so popular and in high demand, his appts are overbooked which is not good either. You can only spread yourself so far.

We are always prepared to methodically ask our questions and concerns as the Doctor's time is precious and we try not to unnecessarily monopolize his time but so isn't your time important too.

Believe me I am not trying to sound like a "know it all". I can only speak from personal experience with my husband's dealing with the Mayo Clinic in Jacksonville and I found their scheduling to be on target and prepared properly insofar as the patient itineraries we needed to follow for the years before, during and after surgery. Their facility seems to run like clock work, very efficient and I felt as a patient (my husband) being respected and catered to.

I truly hope there are better days ahead for you.
64 yr old male suffered with UC & in May 06 had a severe flare & hospitalized 6 days...various prednisone treatments leading to steroid dependence and osteopenia, 12 asacol, 200 mg Imuran, failed remicade infusions Jan-May 2010 Dependence on pain meds. Made decision 6/10 to have surgery which was on 12/17/10 (total proctocolectomy & ileostomy - unable to have the j-pouch) and no longer in pain.

blueglass
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Date Joined Dec 2010
Total Posts : 3332
   Posted 5/7/2011 4:32 AM (GMT -6)   
My gi doc is pretty much a rock star now.... he wasn't when I started, but I figure on having to wait an hour or more every time I see him. But if it's an emergency, he gets me in that day, and takes the time I need. I just expect the wait, bring a book, and figure he is attending to other emergencies etc. It's annoying, but I know I can count on him if I really need him, and he's good enough that it's worth it.

I've had fewer appts with my surgeon, but I've also had to wait a lot there. However, when I decided on surgery, I left a message after hours, and the next morning her secretary called at 8:30 to see if I could come in in an hour -- the surgeon knew it was important that she see me asap, and she scheduled the surgery in two weeks, which was the soonest possible time for me with my pred taper.

My friend has another top gi doc who is extremely punctual.... but she leaves every appointment frustrated because he cuts her off, that's how he stays on schedule.

Some of the issue is regional, supply and demand of certain specialists.

Can't speak for others, but I've lowered my stress level a lot by just expecting delays and figuring that's the price I pay for a great doctor who triages .... I'm just glad I'm not the one in an emergency, and I know that if I were, I'd get what I needed.

The missed diagnosis and subsequent emergency surgery is a whole other issue, Dallas, and I'm sorry you had to go through that. Sounds horrible.
48 years old, female.
2004 dx indeterminate colitis. Back and forth between Crohn's and UC dx. Many drugs, minimal success.
2010-11 Crazy skin and eye complications, high fevers, bad flaring. Out of good drug options, tired of scary drugs.
Feb 2011 -- proctocolectomy with permanent ileolostomy; abscess, blood clot. Still healing, still glad for the surgery

Another UC wife
Veteran Member


Date Joined Jun 2007
Total Posts : 2111
   Posted 5/7/2011 11:33 AM (GMT -6)   
Blueglass what I have found sometimes is just too many appts are booked in one day if a person waits too long and or is given the "bums rush" so to speak at different places.

Fortunately I accompany my husband as I am the secretary with the notes of concerns or questions we have decided on before the appt. and thankfully he has doctor's that are conscientious enough to make sure they have answered our questions and I don't feel rushed. Insofar as my comment on the Mayo Clinic I just find they somehow have it together as appts are on time within minutes and we are never rushed so they must not overbook their appts if it runs that consistently is my guess.

I just find it so hard for someone who is sick and having to endure long waits and or get in to see the Dr only to be rushed out of there in 5-10 minutes if more time is needed.

We have a "popular" dermatologist that we encounter long waits with which annoys the h$ll out of me and it might be time to look for another one. They definitely overbook for sure. Thankfully that is the only place we have this situation with and we go there once every 6-9 months....the Kindle certainly keeps my mind off the time...lol.
64 yr old male suffered with UC & in May 06 had a severe flare & hospitalized 6 days...various prednisone treatments leading to steroid dependence and osteopenia, 12 asacol, 200 mg Imuran, failed remicade infusions Jan-May 2010 Dependence on pain meds. Made decision 6/10 to have surgery which was on 12/17/10 (total proctocolectomy & ileostomy - unable to have the j-pouch) and no longer in pain.

blueglass
Veteran Member


Date Joined Dec 2010
Total Posts : 3332
   Posted 5/7/2011 12:02 PM (GMT -6)   
My doc definitely overbooks.... he has too many patients, no question about it. His secretary has told me that he just won't say no to a person in need..... probably not good in a lot of ways, but related to why people like him so much -- besides being so knowledgeable, he's just a great person who cares.

On the other hand, I got my primary doc when she was right out of school, she looked like she was twelve to me..... very big shortage of primary docs in my area, and she's very good, admits what she doesn't know, don't have to wait much w/her.... but I guess I like having the cutting edge specialist for my specific disease.... even if I have to wait.
48 years old, female.
2004 dx indeterminate colitis. Back and forth between Crohn's and UC dx. Many drugs, minimal success.
2010-11 Crazy skin and eye complications, high fevers, bad flaring. Out of good drug options, tired of scary drugs.
Feb 2011 -- proctocolectomy with permanent ileolostomy; abscess, blood clot. Still healing, still glad for the surgery

Another UC wife
Veteran Member


Date Joined Jun 2007
Total Posts : 2111
   Posted 5/7/2011 1:33 PM (GMT -6)   
I think it is wonderful when a doctor admits he/she does not know the answer but will find it out instead of faking it.

Our local GI did everything by the book and was on the mark how she was treating him....I got amazing advice from the UC forum when we were feeling our way. Some things I even suggested to her during his initial treatment before the days at Mayo Clinic especially a very long slowwwwwwwwww successful taper the final time he was able to get off prednisone based on advice here. When he landed in the hospital and nothing was really helping to bring on a remission, I mentioned to my husband about wanting to try a more specialized intervention.

The very first morning she came in to see him before I got there she requested his permission to be able to refer him to Mayo or Shands who are more "cutting edge" as she was at her wits end and didn't want him to fall through the cracks and continue like this. I was so impressed and pleased that she was not the type of doctor to just keep trying to treat him and do more harm than good. (That wasn't gonna happen anyway...lol)

On the other hand I have a person very close to me who had a totally different type of doctor who was so into himself and I pleaded with her to get another doctor and didn't. Without going into detail it didn't work out very well for her.

So the most important thing for each and every one of you is to have a doctor you really like and trust and if that isn't the case as inconvenient as it might be, you really need to get someone else.
64 yr old male suffered with UC & in May 06 had a severe flare & hospitalized 6 days...various prednisone treatments leading to steroid dependence and osteopenia, 12 asacol, 200 mg Imuran, failed remicade infusions Jan-May 2010 Dependence on pain meds. Made decision 6/10 to have surgery which was on 12/17/10 (total proctocolectomy & ileostomy - unable to have the j-pouch) and no longer in pain.

blueglass
Veteran Member


Date Joined Dec 2010
Total Posts : 3332
   Posted 5/7/2011 2:39 PM (GMT -6)   
So true, and great that you didn't have to have a messy break w/the first gi doc. My first gi doc was just a bad match for me personality wise.... I got her randomly when I came in really sick and got diagnosed. She specialized in colon cancer and would spend half the appointment talking about how to prevent it, when I was trying to wrap my mind around that she wanted me to take asacol everyday; I had never been on a drug that often and didn't believe I had a serious disease. I didn't trust her, although I don't fully blame her for that, but she didn't have the emotional skills to help me trust her in the early phases. I also didn't realize at first that there were IBD specialists, and I had to go through a lot of red tape to get insurance to pay for a second opinion w/my current doc..... started getting very sick, needed my first hospitalization, and changed all my docs the day before I went into the hospital in order to be his patient (I hadn't even met my new primary doc). Fortunately the docs worked out well, and I always recommend to have an IBD specialist if you have IBD that is not well controlled..... all the gi diseases are complicated, and people can't be cutting edge on them all.

And well, colon cancer is no longer a concern, so I dodged it w/out her help, LOL.
48 years old, female.
2004 dx indeterminate colitis. Back and forth between Crohn's and UC dx. Many drugs, minimal success.
2010-11 Crazy skin and eye complications, high fevers, bad flaring. Out of good drug options, tired of scary drugs.
Feb 2011 -- proctocolectomy with permanent ileolostomy; abscess, blood clot. Still healing, still glad for the surgery
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