Boston - where to go for 2nd opinion?

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Beth75
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Date Joined Jul 2007
Total Posts : 2148
   Posted 6/16/2008 3:02 PM (GMT -6)   
I want to go to the Chron's and Colitis Center in Boston.  My friends Dad went and he was very happy with it, also my friend is a nurse who also works @ MGH, she went w/her Dad and she thought they were just wonderful.
 
My Aunt is helping me research my options (as my sister tells me, I do not have a PhD, ESP or a Crystal Ball........so a second opinion is not going to hurt me and I may even learn something = ).   One of her nurse friends recommended the Beth Israel Hospital in Boston.
 
I checked out both the websites and other than the above recommendations, I don't have anything else to go on. 
 
Anyone been to either of these places?  Any thoughts or suggesstions?   I am leaning toward the Chron's and Colitis center in Boston, mostly b/c of my friends Dad, my friends dealings w/MGH and the information on their website.
 
I really want to go to the best place.
 
TIA!
Beth, 32 ~ small flare - hoping caused by aspirin - hydrocortisone e's
Major Flare Sept/Oct 07
UC dx'd 03/00 (Proctosigmoiditis); Pancolitis since 09/07
Azathioprine 200mg 1xday nightly; Calcium and Vit D 500mg 3xday, Multi Vit, Folic Acid 400mg 2xday, Prilosec, Probiotics.
Minimal Change Disease (Kidney Disorder) dx'd 09/07 - partial remission since 03/08
Prednisone 40mg 1xday, Simvastatin 20mg 1xday, Diovan 160mg 2xday. Tekturna 150mg 1xday, Fosomax 70mg 1xweek. MCD may be from hypersensitivty to 5ASA drugs.  Do you have edema? If so, check your blood protien level!
 


nhmas
Regular Member


Date Joined Feb 2005
Total Posts : 44
   Posted 6/16/2008 3:25 PM (GMT -6)   
I currently go to the Crohn's and Colitis Center in Boston and I highly recommend it.  I go to Dr Korzenik, but I've heard that Dr. Sands is really good as well.  Prednisone has never been mentioned as they agree it is not a long term approach.  If he knows you have hesitation with going on a certain medication, he will work with you to find a solution.  For example, I did not wish to go on Remicade when I went down to them for a consultation last summer.  He had my try Flagyl and Cipro, and then when I had a bad reaction to Flagyl, he switched me over to Xifaxan, which worked great for 6 months.  At my previous GI's I had been getting sick within a month of coming of Prednisone.  I'm sure you will have more options available to you then just Prednisone and Remicade if you go down. 
 
If you have any questions, don't hesitate to ask.
 
Mary
 
 
Diagnosed with UC in 1992 (Left Sided - first few flares, Pancolitis 3rd flare). 
10 year remission
Flaring on and off since Jan 2005, currently suspected to have Crohn's
Current medications: Weekly MTX injections, monthly B12 injections, Calcium, Folic Acid, Xifaxan
Past Medications:  All 5ASA oral medications except Dipentum (no effect), Immuran (toxic reaction), Prednisone, Flagyl, Cipro, Bactrim (sulfa drug allergy), Augmentin, Rowasa, Cortifoam, Cortenema.
 


bap06
Regular Member


Date Joined Jun 2008
Total Posts : 57
   Posted 6/16/2008 5:07 PM (GMT -6)   
I have also heard great things about the MGH Colitis Center. My mom is a nurse in the area, and all of her doctor friends recommend it. I'm not there yet - I'm happy with my doctor now, and don't want to deal with the city traffic and parking yet, but I'm sure that's where I'll end up, too. (BTW - Dr. Sands is the one that was recommended to her). On the other side, my mother-in-law works with some people who swear by Beth Israel for their UC. We're lucky to have so many great hospitals in the area - you really can't go wrong with either MGH or BI!
*Diagnosed 10/07 (6 months pregnant w/ 2nd baby)
*Asacol (4 pills 3x a day)
Canasa
Prilosec
Calcium, multivitamin, Metamucil


Eva Lou
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Date Joined Sep 2006
Total Posts : 3442
   Posted 6/16/2008 5:11 PM (GMT -6)   

MGH is good- I've heard nothing but good things about Dr. Sands, & he's relatively easy to get an appt. with. I went to Beth Israel, & saw the head of th GI Department, Dr. Mark Peppercorn for a 2nd opinion/consult. My GI had recommended both, & said whoever I could see sooner, so BI it was! It was a GREAT visit- it must've lasted well over 2 hours. I had a full history, exam, & then met with him to discuss treatment options. At this time, I was flaring badly & had been on Remciade for about a year. He recommended upping the dose & shortening my dosing schedule, as well as a million other things. Ultimately, he reommended surgery, but I did not choose that route. Either of those hospitals are great for IBD- good luck!


diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade infusions
Imuran- 100mgs/day
Culturelle
 
 
 
 


munchkindd
Regular Member


Date Joined Oct 2007
Total Posts : 348
   Posted 6/16/2008 8:04 PM (GMT -6)   
I agree with Eva Lou, I was a patient of Dr. Peppercorn at Beth Israel for many, many years. I only switched because I went into remission and it was such a pain to get into the city with all that darn traffic. He really knows his stuff.
*******Donna*******
 
diagnosed with uc 27 years ago.  Enojoyed 20 year remission with just minor blips here and there (approximately 16 of those years without any meds)
 
In a flare for 2 very long years which Asacol didn't help at all.  Finally in remission again since Jan 2008, can't believe it..............
 
currently on Sulfasalazine 2 tabs 3x day. Folic acid, mesalamine enema 2 x a week. Omega 3, Probiotics, multi vitamin, calcium supplement, Biotin....
 


blankslatejoe
Regular Member


Date Joined Jun 2006
Total Posts : 71
   Posted 6/17/2008 7:11 AM (GMT -6)   
if youre looking for something a little outside the city, one of peppercorn's students, dr. linn, practices at emerson hospital. It's on rt. 2, in concord. There's a cluster of a couple of good docs in there.

Beth75
Veteran Member


Date Joined Jul 2007
Total Posts : 2148
   Posted 6/17/2008 8:06 AM (GMT -6)   

thanks for all your responses.  I think I am still leaning towards the Chron's and Colitis for a second opinion.  I like my Doc in Nashua and want to keep him, but I do want to get a second opinion.

I work close to Emerson Hospital so that would be super convenient, but I went there once before and it was not a good experience (though I am sure all places have people that do not have good experiences). 


Beth, 32 ~ small flare - hoping caused by aspirin - hydrocortisone e's
Major Flare Sept/Oct 07
UC dx'd 03/00 (Proctosigmoiditis); Pancolitis since 09/07
Azathioprine 200mg 1xday nightly; Calcium and Vit D 500mg 3xday, Multi Vit, Folic Acid 400mg 2xday, Prilosec, Probiotics.
Minimal Change Disease (Kidney Disorder) dx'd 09/07 - partial remission since 03/08
Prednisone 40mg 1xday, Simvastatin 20mg 1xday, Diovan 160mg 2xday. Tekturna 150mg 1xday, Fosomax 70mg 1xweek. MCD may be from hypersensitivty to 5ASA drugs.  Do you have edema? If so, check your blood protien level!
 


Old Hat
Veteran Member


Date Joined Feb 2007
Total Posts : 5177
   Posted 6/17/2008 9:54 PM (GMT -6)   
Korzenik is very "cutting edge"; you can likely google him & find what he's said in recent yrs at IBD patient conferences. I know he has collaborated with my gastro on some writing projects, which says a lot to me-- because my gastro would not work with dummies. / Old Hat (nearly 30 yrs with left-sided UC ... [etc.])

nhmas
Regular Member


Date Joined Feb 2005
Total Posts : 44
   Posted 6/18/2008 5:14 AM (GMT -6)   
Hi Old Hat,
 
Dr Korzenik does seem very cutting edge.  He is also very willing to work with you, clearly explains things, the office returns phone calls quickly(sometimes him, sometimes his NP who is great as well) and has an overall great personality. I live in southern NH, so I drive 1 hr 15 minutes to get to the appts, but it has been well worth it. 
 
Before going to him, I was in a sick on and off (mostly on) for 2.5 years.  My old doctor offered prednisone time and time again for longer and longer periods of time because, it was explained, that is what they do. Nothing was ever monitored when I was on prednisone.  He did finally try Immuran, but when I had a toxic reaction to it, he started just suggesting medication (Remicade, Lialda (no 5ASAs have been effective)) without explaining why they would think it would work. These are your choices, take it or leave it. It was more of a my way or the highway approach.
 
Since going to Korzenik, I was well for 5 months and then started getting sick.  He quickly reacted to the situation and worked with me until we found something else that would work. I've felt well for about 1.5 months now.  He also thought to check my B12 levels, which were pretty low, and started me on B12 injections.  My old GI never thought to check this even though I was exhibiting the same symptoms of the deficiency back when I was going to him and would tell him of my symptoms during my appts.  I recommend Korzenik highly.
 
Mary
Diagnosed with UC in 1992 (Left Sided - first few flares, Pancolitis 3rd flare). 
10 year remission
Flaring on and off since Jan 2005, currently suspected to have Crohn's
Current medications: Weekly MTX injections, monthly B12 injections, Calcium, Folic Acid, Xifaxan
Past Medications:  All 5ASA oral medications except Dipentum (no effect), Immuran (toxic reaction), Prednisone, Flagyl, Cipro, Bactrim (sulfa drug allergy), Augmentin, Rowasa, Cortifoam, Cortenema.
 


FitzyK23
Veteran Member


Date Joined May 2005
Total Posts : 4219
   Posted 6/18/2008 7:15 AM (GMT -6)   
If you have issues in your other systems (besides digestive) I hear the Lahey Clinic is the way to go. My mom went there YEARS ago so I don't know if it is still the same. But when she went they make no assumptions, don't look at your previous records right away, and look at your whole body, all systems. They definitly think outside the box and then try to tie everything together. Knowing you have UC it might not be worth it but if you had all sorts of stuff going on and weren't sure if it was the UC then it might be worth it.

JennKuc
Regular Member


Date Joined Jun 2007
Total Posts : 49
   Posted 6/21/2008 8:58 AM (GMT -6)   
I am currently relocating from Ohio to Boston, and have been trying to schedule an appointment with one of the Dr. at the Colitis Clinic. I called the office number posted on their website, 614-724-6005, and have had a bad experience with the office staff there. I have had to fax my medical records 4 times, because they admit that they keep losing them. I've heard wonderful things about the clinic, but getting an appointment has been terrible. I'm still waiting for a call back to schedule an appointment before I move to Cambridge. Has anyone else experienced this?? After seeing the reviews for Dr. Korzenik, I would love to be one of his patients. Do I need to request an appointment with him? The NP (Leslie?) told me she would review my records, to see which Dr. would be good for me.
Thanks for your help!
30 yr old female, Columbus Ohio
Diagnosed with UC at age 14.
Colazel, Remicade ever 8 weeks, folic acid, multi vitamin, calcium, rowasa

Been in remission for about 3 years since starting Remicade. 


nhmas
Regular Member


Date Joined Feb 2005
Total Posts : 44
   Posted 6/21/2008 1:27 PM (GMT -6)   

I originally went to the Crohn's and Colitis Center for a consultation setup by my previous GI.  They originally set it up for a General GI at MGH, so they had to cancel.  Initially, when  they sent my records to the Crohn's and Colitis Center, noone called.  My previous GI had to remind them or resend records or something, not sure what.  After that, they called and set up an appt and I got in within 2 months. 

A few months after my consultation, I decided to change GI's.  I called the Crohn's and Colitis Center and they scheduled me for a follow up appt.  It seems that initially it is hard to schedule an appt, but once you are in it's easy. 

I wasn't given the choice of Dr's.  I was scheduled with Dr Korzenik.  I'm not sure if you can request him or not.  Beth Anne, his NP, is very good and most likely would place you with the right doctor.  I've heard Dr Sands is very good as well, so I don't think you can go wrong either way.

Mary


Diagnosed with UC in 1992 (Left Sided - first few flares, Pancolitis 3rd flare). 
10 year remission
Flaring on and off since Jan 2005, currently suspected to have Crohn's
Current medications: Weekly MTX injections, monthly B12 injections, Calcium, Folic Acid, Xifaxan
Past Medications:  All 5ASA oral medications except Dipentum (no effect), Immuran (toxic reaction), Prednisone, Flagyl, Cipro, Bactrim (sulfa drug allergy), Augmentin, Rowasa, Cortifoam, Cortenema.
 


Old Hat
Veteran Member


Date Joined Feb 2007
Total Posts : 5177
   Posted 6/21/2008 8:04 PM (GMT -6)   
You can phone the center & ask if a specific gastro accepts new patients-- if they say no, ask if the gastro does consultations on physician referral. The situation can vary among the most savvy IBD gastros, depending on how heavy their current caseload is, and/or what their research interests are. Sometimes they acquire new receptionists who don't seem to have a clue about scheduling appointments; this is likely the reason why. I've noticed on CCFA Physician Finder, for example, that a couple top IBD gastros in NYC sometimes list there, but at other times remove their names, indicating that they're not available to new patients. In the mid-1980s I tried to schedule an office visit with one of these guys, whose receptionist asked me a couple dozen Qs about my condition over the phone & then told me that the gastro was only accepting Crohn's patients at that point in time! So-- it can be hard to get a foot in the right door; one has to be persistent in many instances-- to get the desired appointment, but as nhmas writes, it is well worth the effort when these "top guns" help you to better manage your UC. / Old Hat (nearly 30 yrs with left-sided UC ... [etc.])

kelina
Regular Member


Date Joined Aug 2005
Total Posts : 322
   Posted 6/23/2008 9:26 PM (GMT -6)   
beth~ my previous gi moved to boston i LOVED HIM, i was so upset when he moved, he got me in remission, and he's a sweetheart his name is Dr. Papper. look him up...he use to work for the uc and crohns foundation of nj at robert wood johnson hosptial in new brunswick nj...CALL HIM!

<SPAN style="FONT-SIZE: 11pt; COLOR: purple">28 yr old, female lower left moderate to severe UC since 2002<SPAN style="FONT-SIZE: 11pt; COLOR: black"><?xml:namespace prefix = o ns = "urn:schemas-microsoft-com:office:office" /><o:p></o:p>



only taking 6 mp now, and remicade every 8 weeks. xanax when needed!

canasa when needed, can't do rowasa!

<SPAN style="FONT-SIZE: 11pt; COLOR: purple; FONT-FAMILY: Verdana">Next Remicade Treatment july 21st


</FONT>


kelina
Regular Member


Date Joined Aug 2005
Total Posts : 322
   Posted 6/23/2008 9:28 PM (GMT -6)   
beth~ my previous gi moved to boston i LOVED HIM, i was so upset when he moved, he got me in remission, and he's a sweetheart his name is Dr. Papper. look him up...he use to work for the uc and crohns foundation of nj at robert wood johnson hosptial in new brunswick nj...CALL HIM!

<SPAN style="FONT-SIZE: 11pt; COLOR: purple">28 yr old, female lower left moderate to severe UC since 2002<SPAN style="FONT-SIZE: 11pt; COLOR: black"><?xml:namespace prefix = o ns = "urn:schemas-microsoft-com:office:office" /><o:p></o:p>



only taking 6 mp now, and remicade every 8 weeks. xanax when needed!

canasa when needed, can't do rowasa!

<SPAN style="FONT-SIZE: 11pt; COLOR: purple; FONT-FAMILY: Verdana">Next Remicade Treatment july 21st


</FONT>


Beth75
Veteran Member


Date Joined Jul 2007
Total Posts : 2148
   Posted 6/24/2008 6:51 AM (GMT -6)   
thank you very much, I will look him up! Still gathering info.

I also need to schedule a 2nd opinion for my kidney's, it's just not going in the right direction as quickly as it should (my kidneys should have been in remission 4-6 mos ago) and I think as pb4 mentioned in one of my posts before, it may be good for me to find someone who subspecializes in auto-immune diseases.

I am starting to feel desperate. Though today I feel really good. Darn emotions w/the pred are creeping up on me again.
 
Maybe it would be best if I start discussing getting a 2nd opinion for both my illneses w/my primary care Dr. I can always discuss w/the others after.  I think I am going to call her and fax a brief/concise letter over explaining my situation and see what suggestions she has.  Isn't that what our primary Doc's are for?
 
One thing I tend to do is act very quickly once I have made up my mind about something and do not always explore all the avenues I should.


Beth, 32 ~ small flare - hoping caused by aspirin - hydrocortisone e's
Major Flare Sept/Oct 07
UC dx'd 03/00 (Proctosigmoiditis); Pancolitis since 09/07
Azathioprine 200mg 1xday nightly; Calcium and Vit D 500mg 3xday, Multi Vit, Folic Acid 400mg 2xday, Prilosec, Probiotics.
Minimal Change Disease (Kidney Disorder) dx'd 09/07 - partial remission since 03/08
Prednisone 40mg 1xday, Simvastatin 20mg 1xday, Diovan 160mg 2xday. Tekturna 150mg 1xday, Fosomax 70mg 1xweek. MCD may be from hypersensitivty to 5ASA drugs.  Do you have edema? If so, check your blood protien level!
 

Post Edited (Beth75) : 6/24/2008 6:55:51 AM (GMT-6)


bap06
Regular Member


Date Joined Jun 2008
Total Posts : 57
   Posted 6/24/2008 2:35 PM (GMT -6)   
I would definitely talk with your primary care doc. After my last hospitalization, I was so confused. In the hospital I had been dealing with a thoracic surgeon, a cardiologist, a hospitalist, and of course, my GI. When I was discharged they told me to make an appt. to see my primary doc within a week. He pulled all the pieces together and it all made a little more sense. He also ordered more tests that I wouldn't have thought of. And I think it's just a good idea to keep your primary aware of everything going on with you!
*Diagnosed 10/07 (6 months pregnant w/ 2nd baby)
*Asacol (4 pills 3x a day)
Canasa
Prilosec
Calcium, multivitamin, Metamucil

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