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Posted 9/1/2007 9:44 AM (GMT -7)
anyone on here go there? I figured if anyone did, or if they live in the Boston area, the title of the post would grab your attention. I'm pretty psyched- I have an appt. with a doctor there, Mark Peppercorn- crazy name, I know.... He's a Harvard Medical Professor & the Director of the IBD Center at the hospital. You can't get an appt. with him unless you have a confirmed IBD diagnosis. My GI doc recommended either him or Dr. Sands at MGH, whoever could get me in sooner. I'm flaring now, have been on Remciade, we really have no other options to try. My GI doc won't put me on Humira cause it's not been FDA approved for use in UC yet, he feels it's unethical. I can't argue with the guy, but still.... So hopefully this Dr. Peppercorn will either prescribe it, or maybe put me in a clinical trial with it. I feel like as far as a second opinion goes, I can't get anyone more qualified. The appt. is 9/18, so of course I will let you all knwo how it goes. But any feedback from anyone who's been to the BIDMC IBD Center would be great! yeah
diagnosed '02

meds-

Asacol- 8 tabs/day

Remicade infusions

Imuran- 100mgs/day

 

Posted 9/1/2007 1:30 PM (GMT -7)
PEPPERCORN! that was my doc's teacher, i think.. at least, it sounds really familar...apparently hes like one of the leading doctors for UC in the world. I dont know what BIDMC is, im guessing a medical center in boston?

i got to emerson hospital, a little outside the city

Post Edited (blankslatejoe) : 9/1/2007 2:43:37 PM (GMT-6)

Posted 9/1/2007 7:34 PM (GMT -7)
I assume you mean Beth Israel Deaconnes which of course has a phenomenal reputation. Good luck and let us know how you make out. We come from Boston and have retired to Florida 5 years ago...I am hoping our experience with the Mayo Clinic will be equal to the great Boston hospitals we always had at our disposal.

(If things don't improve who knows we may be needing to go to Boston ultimately. We are hoping that will not be the case.)

60 yr old male~Colitis 1st diagnosed Jan '05-cleared up within a few wks. Flared again in May '06 ... left sided UC now, fully involved and trying to get in remission. Acute inflammation-pancolitis-tenesmus rectal pain-granulation is showing some healing started. Osteopena of spine from prednisone DX 8/07  July 07 good days & bad days 75mg Imuran 40  mg prednisone (tapering 8/07) 12 Asacol, Lidocaine Hydrochloride Jelly 2%,multi vitamin, iron 3X day, DanActive, chewable calcium, Prilosec 20mg, enalapril 10mg, glipizide 5 mg, zocor 20 mg, baby aspirin, (Fentanyl pain patch 50mg 72 hrs  Morphine Sulf 15 mg twice daily)Colocourt enemas at night. Fosamax and mthly B12 shots folic acid 1mg

Posted 9/1/2007 7:40 PM (GMT -7)
I assume you mean Beth Israel Deaconnes which of course has a phenomenal reputation. Good luck and let us know how you make out. We come from Boston and have retired to Florida 5 years ago...I am hoping our experience with the Mayo Clinic will be equal to the great Boston hospitals we always had at our disposal.

(If things don't improve who knows we may be needing to go to Boston ultimately. We are hoping that will not be the case.)

60 yr old male~Colitis 1st diagnosed Jan '05-cleared up within a few wks. Flared again in May '06 ... left sided UC now, fully involved and trying to get in remission. Acute inflammation-pancolitis-tenesmus rectal pain-granulation is showing some healing started. Osteopena of spine from prednisone DX 8/07  July 07 good days & bad days 75mg Imuran 40  mg prednisone (tapering 8/07) 12 Asacol, Lidocaine Hydrochloride Jelly 2%,multi vitamin, iron 3X day, DanActive, chewable calcium, Prilosec 20mg, enalapril 10mg, glipizide 5 mg, zocor 20 mg, baby aspirin, (Fentanyl pain patch 50mg 72 hrs  Morphine Sulf 15 mg twice daily)Colocourt enemas at night. Fosamax and mthly B12 shots folic acid 1mg

Posted 9/4/2007 7:31 AM (GMT -7)
yeah, Beth Israel Deaconess. I'm actually really excited about the appointment- I trust & think my current GI doc does a really good job, but who knows, maybe this Dr. Peppercorn will have some cutting edge info/meds/clinical trial for me. I consider myself extremely lucky to have access to the hospitals in Boston.... I know there are good ones all over the country, but I have to admit- I'm kind of a health care snob! Boston has the best, in my humble opinion. :-)   PS- plus I feel that if this guy recommends surgery, than I've done all I can do to avoid it. Hopefully I'll feel better about surgery if it does come to that, knowing that I spoke with one of the best docs in the country.
diagnosed '02

meds-

Asacol- 8 tabs/day

Remicade infusions

Imuran- 100mgs/day

Cipro- 200mgs/day

Post Edited (Eva Lou) : 9/4/2007 8:35:13 AM (GMT-6)

Posted 9/4/2007 12:11 PM (GMT -7)
Eva, keep us posted.
Diagnosed with UC in Feb. 2005

Colazal (9 a day)

Folic Acid

3rd Remicade infusion

Posted 9/5/2007 4:30 AM (GMT -7)
BID is supposed to be very good, my roommate has Crohn's and she has been going to their IBD center for years. She feels very comfortable with them.

I'm an MGH girl myself, I actually see Dr. Sands at the Crohn's and Colitis Center there. Same deal, you have to send your record to get an appt. I have had an excellent experience with him and the whole staff there. Especially having all the services under one roof (bloodwork, Remicade, scopes, etc) made it really convenient when I was going there every week or two. I would imagine BID has a similar set up.

The IBD medical community in Boston is a small one, they all seem to know each other and work together on all the trials. They are a very highly regarded group of IBD researchers (all associated with Harvard Med I think). At either place you will get top-notch care, which makes a big difference. I hope your appt goes well!
Liz

Kenny's my colon, he decided to get UC in July 2004.
RIP Kenny! JPouch Step 1: 6/19/06, Step 2: 8/25/06.

Posted 9/5/2007 4:35 AM (GMT -7)
Oh, and I just have to say, if anyone goes to MGH and sees a Beth-Ann at the Crohn's and Colitis Center, you are in good hands. She is the NP there, she specializes in IBD and she also had UC herself. Having someone on staff who 'gets' what you are saying is pretty wonderful.
Liz

Kenny's my colon, he decided to get UC in July 2004.
RIP Kenny! JPouch Step 1: 6/19/06, Step 2: 8/25/06.

Posted 9/5/2007 2:01 PM (GMT -7)
I work about 15 min away from Emerson hospital. I see a Doc in NH at the Dartmouth-Hitchcock Clinic (Dr. Bueno), they have my primary, obgyn, GI, nephrologist and labs all in the same building, except my nephrologist (he's down the street). It's convenient so they all have all my records whoever I see. The bad part is, they don't refer out of the building so if I want someone out of the building, I will have to probably change my primary and all my other doc's as well.

Wish you the best, good to know this type of care is only 45 min away from where I live.
Beth, 31

UC Diagnosed March 2000

Lialda 2.4mg 1xday since 8/24/07 (prev. Asacol 4800mg day)

Calcium and Vitamin D 500 mg 2xday

Simvastatin 20 mg 1xday

Diovan 80mg 1xday (dx: hematuria w/proteinuria): I have normal blood pressure, this is for my kidney - waiting for a dx.

Posted 9/5/2007 3:45 PM (GMT -7)

Hi Beth,

I see Dr Bueno as well.  They just sent me for a second opinion at MGH and I have to say the difference is night and day.  He was very quick to put me on prednisone even when it was apparent it wasn't that affective anymore.  When I questioned this, the reason given to me was "because that is what we do".  MGH has been great. I only went there one time, but the doctor there is following me while my medication is adjusted. 

I, like you, liked that fact that the primary care, ob-gyn, was all in the same facility as it was easier for me.  I'm thinking that probably that is not a good enough reason to stay with Dr Bueno anymore. 

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