Dr. Stephen B. Hanauer - ANYONE BEEN TO HIM?

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Kaycie
Regular Member


Date Joined Jan 2006
Total Posts : 449
   Posted 3/9/2008 10:14 AM (GMT -7)   
Well, apparently he's an expert in IBD according to my GI.

I have a Crohn's, but it's all located in my rectum. In the past 2 1/2 years, I've had 3 fistulas, 2 abscess, 1 skin tag, and now internal hemorrhoids.

I'm in my child-bearing years and my husband and I have had to use IVF to conceive. Partially because I have PCOS and partially because the drugs and the Crohn's as forced my ovaries into pre-menopause at the ripe age of 24! (I'm 25 now).

I had a very complicated pregnancy. I had triplets, lost one at 6 weeks and then went on to carry my twin girls. Unfortunately, one of my daughters died from a rare anomaly called Cloaca (you all *might* understand that since it's a urinary/gi issue). It's so rare they can't explain how it happened and say it should never happen again. My other daughter is healthy despite being born 2 1/2 months early.

I've been having issues, so they had me do another colonoscopy to see what might be going on now. He said my colon looked good for a Crohnie, but he wanted to compare to my last one to be sure no significant change has happened. I've been maintaining purely on Remicade for the past 2 years and have avoid Imuran because I don't feel it's safe to be on while pregnant or trying to have children, especially with our past experience.

My doctor has given me 4 options:
1) steroids - this is pretty much a no because they caused me to get cataracts last time - my Opthamologist said to avoid them as much as possible - and going on this would be a long-term thing for now - and osteophorosis runs in our family
2) Canasa suppositories - not apposed to this, but if any of you have used a suppositories with a swollen rectum, you KNOW how painful this is!
3) Rowasa enemas - I've used these before and don't mind them, BUT, I'm not so wise using a medicinal enema while pregnant is wise as when I became severely constipated continually while pregnant, they put me on Miralax daily instead of enemas for fear of PTL
4) Imuran - I've been trying to avoid, but the point of this post - My doc offered to send me to Dr. Hanauer to discuss Imuran during pregnancy since I'm so apprehensive to it. He said he has found no link to birth defects. The issue is I'll have to take that back to my High Risk OB and my Reproductive Endocrinologist and I'm sure they will both cringe at the thought of even the *risk*

Any thoughts here? Would love any input I can get!
Kaycie - Age: 25
Crohn's - (Technically Indeterminate Colitis) - Dx Nov 05
Remicade - Next infusion - January 24th
Lidocaine 2% Rectal Gel (as needed)
IVF #1 (In-Vitro Fertilization) - Failed
IVF #2 - IVIg, Heparin, Baby Aspirin - TWIN GIRLS!!!
Reagan Dawn - 8/2/07 - Lived 1 hour 27 minutes due to Cloaca, NOT affiliated with my Crohn's
Addison Maria - 8/2/07 - 5 months old


gumby44
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Date Joined Nov 2007
Total Posts : 4095
   Posted 3/9/2008 12:35 PM (GMT -7)   
I have heard that everyone at U of Chicago is very good. Good luck with everything!
49 yr. old female, diagnosed with Crohn's in small intestine and terminal ileum Sept-Oct. 2007
currently taking Pentasa 2750 mg- 9pills/day and on and off Prednisone for flares


Kaycie
Regular Member


Date Joined Jan 2006
Total Posts : 449
   Posted 3/9/2008 3:47 PM (GMT -7)   
Thanks! He's not far from me (about 4 1/2 hours) and I wouldn't mind traveling to just sit and talk with him about all of this. I'm quite concerned what my OB and RE will say, and you bet I'll be calling and talking to a multitude of doctors tomorrow trying to figure out a new game plan.

Some days I just want to scream... ya know? I really just want to have children and grow old. The Crohns' can stay, I just hate that it inhibits THIS part of my life as well...
Kaycie - Age: 25
Crohn's - (Technically Indeterminate Colitis) - Dx Nov 05
Remicade - Next infusion - January 24th
Lidocaine 2% Rectal Gel (as needed)
IVF #1 (In-Vitro Fertilization) - Failed
IVF #2 - IVIg, Heparin, Baby Aspirin - TWIN GIRLS!!!
Reagan Dawn - 8/2/07 - Lived 1 hour 27 minutes due to Cloaca, NOT affiliated with my Crohn's
Addison Maria - 8/2/07 - 5 months old


ginger71
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Date Joined Nov 2005
Total Posts : 722
   Posted 3/9/2008 4:59 PM (GMT -7)   
Kaycie-
 
I've never heard of Dr. Hanauer but I just wanted to  offer some support and let you know I am in a similar situation. I travel 3 hours to NYC to see specialists at Mt. Sinai. It is kind of inconvenient but I am so happy I did and I feel lucky that I have access to such great Drs. who really seem to be helping me. If you have the opportunity to see such an expert, I would go for it.
 
I'm having fertility issue, too. We have been trying for 8 months but because of my age, I am going to start the whole testing process now instead of wating a year. My husband's SA was great so it is me. It is really tough but hang in there and get yourself better. I hope this Dr. can help you. Best of luck with everything! :-)
 
Ginger


37 year old female. Dx'd and undx'd a few times. Was just redx'd again 04/2007.
History of rectal abscesses and fistulas (29 surgeries including abscess I & D, exploratory surgeries, 4 C-ton drains and 1 fistula plug) Have also had several self bursting abscesses.
1st Remicade infusion 6/5/07-still taking it.  Praying I'll get better soon so we can have a baby.
Ginger :)

Post Edited (ginger71) : 3/9/2008 6:43:09 PM (GMT-6)


Beth
Regular Member


Date Joined Aug 2003
Total Posts : 303
   Posted 3/9/2008 5:16 PM (GMT -7)   

Kaycie - I am a patient of Dr. Hanauer.  If you can get in to see him - GO!!!  Seriously.  I'm 3 1/2 hours from him and it's been worth every single minute of time spent in the car going to and from his office.  I was referred to him in early 2002 when my local GI was just having a heck of a time getting me into remission.  My local GI basically told me that I was just going to have to get used to not feeling 100% because of having Crohn's.  The very first time I saw Dr. Hanauer, he told me he's "seen worse" and he would be able to help me.  And he did.  :)  After we left his office for the first time, I told my husband that he was definitely an answer to my prayers.  With his help, most days my Crohn's is a non-issue and I thought that wasn't ever going to be possible. 

Dr. Hanauer has seen me through 1 (almost 2) pregnancies - I'm 32 weeks now.  With my older daugher, he kept me on Imuran the entire time.  She was born at 36.5 weeks, but weighed 8 lbs 3 oz and scored a 9 and 10 on her Apgars.  She's healthy and perfect and will be 3 in May.  This pregnancy, I was on Imuran and Humira at the beginning, but was able to go off the Imuran and am currently only on Humira. 

I was seeing an RE when I conceived my daughter because of having 2 miscarriages prior to that pregnancy.  She conferred with Dr. Hanauer about the use of Imuran during pregnancy and deferred to his expertise on the subject.  My OB also defers to him.  I wouldn't have it any other way.

He's not only one of the leading experts on IBD, he's also one of the nicest men you will ever meet.  He takes time to answer any question I have and has never made me feel like I'm rushed or he can't spend a lot of time with me.  His nurse, Debbie, is amazing too.  


Beth
 
Dx in early 1999
Resection in June 2006
Currently on Humira
 


njmom
Veteran Member


Date Joined Apr 2006
Total Posts : 1884
   Posted 3/9/2008 6:17 PM (GMT -7)   

He is one of the top Crohn's GIs in the country. He subscribes to the step down approach -- using the strongest meds, first. Instead of the step up approach, which uses the least effective (but also least toxic) meds, first. 


EricaM
Regular Member


Date Joined Jan 2007
Total Posts : 184
   Posted 3/9/2008 8:17 PM (GMT -7)   
Kaycie-

Dr. Hanauer is the top researcher in Crohn's and Colitis in the country I highly recommend him or Dr. David Rubin who works with him at the University of Chicago. Google both of them and they are all over the net. I go to Dr. Rubin myself and he goes all over the country teaching and educating both patients and physcians on the latest and greatest treatment options. You can also see Dr. Rubin at www.crohnsandme.com

Again, Hanauer is the top in the field and you cannot go wrong with him! Here's his bio from the University of Chicago Medical Center's webpage:

Dr. Stephen Hanauer is a world leader in the treatment of inflammatory bowel diseases (IBD).

He is the past chair of the Immunology, Microbiology and Inflammatory Bowel Disease Section of the American Gastroenterological Association (AGA). Dr. Hanauer is the recipient of the AGA's Fiterman Award for Clinical Research.

He previously served as a member and chair of the Food and Drug Administration (FDA) Gastrointestinal Drugs Advisory Committee and currently chairs the International Organization for Inflammatory Bowel Disease.

Dr. Hanauer is a member of the Crohn's and Colitis Foundation of America's National Scientific Advisory Committee.

Dr. Hanauer led a team of researchers who discovered a maintenance therapy for Crohn's disease.

In 2001, a team of University of Chicago physicians along with researchers from the University of Michigan identified the first gene that increases susceptibility to Crohn's disease.

Good Luck you have been through so much already you will be in my thoughts-
Erica


Erica
Crohn's and Ostomy in 2004


EricaM
Regular Member


Date Joined Jan 2007
Total Posts : 184
   Posted 3/9/2008 8:25 PM (GMT -7)   
P.S.

Dr. Hanauer will be one of the lecturers at the Crohn's and Colitis Educational Symposium at the Donald E. Stevens Convention Center in Rosemont, Illinois. It is right near O'Hare airport. There are 4 sections with 16 programs to choose from...here's the link:

Here's the link for the online brochure:

http://cme.uchicago.edu/pdf/CCFA%202008%20(Patient%20&%20Family%20Program).pdf

The link for online registration:

http://www.register123.com/event/profile/form/index.cfm?PKformid=0x514996d34f

And the link for the Illinois CCFA:

http://www.ccfa.org/chapters/illinois/
Erica
Crohn's and Ostomy in 2004


Aussiegirl2008
Regular Member


Date Joined Feb 2008
Total Posts : 80
   Posted 3/9/2008 8:32 PM (GMT -7)   
Does Imuran make it harder to get pregnant? How does it affect pregnancies? I am on Imuran, and not looking to get pregnant yet, but my hubby and I will be having kids one day...
:)

Beth
Regular Member


Date Joined Aug 2003
Total Posts : 303
   Posted 3/10/2008 8:52 AM (GMT -7)   
Imuran did not make it harder for me to get pregnant. Of the 4 times I've been pregnant, I got pregnant the first month of trying 3 times and the second month the other time. I did have 2 miscarriages, but those were because of a clotting disorder and had nothing to do with the Imuran. I've taken a baby aspirin during my 2 successful pregnancies because of the clotting issue and they've gone fine.
It used to be widely thought (and a lot of doctors still are of the mindset) that it's a BIG no-no to get pregnant while on Imuran. More research is showing that the higher doses such as what transplant patients take are what causes problems and the lower doses used for IBD are OK. Of course, if possible, it's best not to be on anything, but we all know how that goes.....
Beth
 
Dx in early 1999
Resection in June 2006
Currently on Humira
 


Aussiegirl2008
Regular Member


Date Joined Feb 2008
Total Posts : 80
   Posted 3/11/2008 3:15 PM (GMT -7)   
Thanks for that info!! Good to know :)
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