Looking for recommendations on a few things...

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elddiReMsihT
Regular Member


Date Joined Nov 2010
Total Posts : 111
   Posted 11/3/2010 9:54 AM (GMT -6)   
I have ulcerative colitis and my doctor has recommended that I get my colon removed and get a j-pouch. Now I'm in the process of trying to find a surgeon and I would just like some recommendations on a few things. Obviously I'll be getting my GI's recommendations as well, but I figured it couldn't hurt to get some input from some people who have experience with this!
 
First of all, I'm 18 years old and physically very small. My GI thinks it may be a good idea for me to look for a pediatric surgeon who will make an exception for my age. I think this may be a good idea, as my physical size will be relevant during the surgery, while my age is just a number. However, part of me also thinks I should look for an adult surgeon, as I'll need to follow up with my surgeon for years afterwards and I'd probably have to change who I see pretty soon if I had a pediatric surgeon. Any thoughts on this?
 
Secondly, my home is in upstate New York, but after I recover from sugery, I plan to return to my college, which is about four hours away in Massachusetts. We're not sure if we should be looking for surgeons in the New York area or in the Massacusetts area. I'll be at home during the initial recovery process, and I'd like for my surgeon to be nearby during that time, but at the same time, I'd like for my surgeon to be nearby while I'm at college in case I experience any complications once I go back. What would you advise?
 
Finally, if anyone had any phenomenal experiences with j-pouch surgeons in the northeast, I would love to hear some names...!
 
Thanks!

Chasblah
Veteran Member


Date Joined Feb 2007
Total Posts : 788
   Posted 11/3/2010 11:35 AM (GMT -6)   
I think you should consult with both a pediatric and a regular surgeon. Consulting with them will give you an idea of what they recommend and are comfortable with.

Hmmmm. I think whether your sugeon is near home or college is really up to you. I originally chose a surgeon that was in St. Louis and I live in KC. When I did have major complications, It was just too far to travel to St. Louis for help. But, my complications were right after surgery. So, I don't know what to tell you. You could meet with them in both places and then decide. Also, take into account the reputation of the hospital, b/c we did not, and it made a big difference with my recovery experience.

You could look at j-pouch.org to find some more info and maybe someone near you.
Chassity
29y. married with one beautiful daughter born 11/20/07
-2002 dx with severe pancolitis u/c; 12/19/08 had total colectomy; 12/25/08 emergency surgery due to abscess-had to redo ileostomy and switch to left side; 2/15/09 found blood clot in superior mesenteric vein (prob. from inf. and surgery inflammation)
Feeling Fabulous Now with my ileostomy!!!!!
Pregnant with second baby due 5/26/11

80sChick
Veteran Member


Date Joined Oct 2009
Total Posts : 1054
   Posted 11/3/2010 4:59 PM (GMT -6)   
I agree; I'd get a consultation with both a pediatric AND adult surgeon. See which you feel more comfortable with once they've told you what they recommend.

And, similar to Chassity, I had complications close to my surgery date as well, so I would recommend staying close to your surgeon for the few months after your surgery. If you have your surgery done at home, I'd get a referral from that surgeon to a surgeon or hospital in the area of your college, just to be safe.

Good luck on your road to feeling better!! :)
Stephanie, 28 years old
Diagnosed with Crohn's Colitis March 2000
Possible diagnosis of IBS-D
Total Proctocolectomy and Permanent Ileostomy 3/18/10! :)
Blockage/Ileo revision 6/8/10 :/
 
Tried: Asacol, Remicade, 6mp, Humira, Xifaxan, Apriso, Imuran, Rowasa Enemas, Colocort Enemas, Psyllium Seed Powder... Tried Probiotics: Align (with no change except bloating) and VSL #3 DS (AWFUL diarrhea).
 
Currently taking: Prenatal Vitamin, Vitamin B 12 Complex, Biotin, Vitamin D, Calcium, Flomax (for urinary retention). 

Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 11/4/2010 6:36 AM (GMT -6)   
There are many surgeons who treat children and adults...not all do, so I'd find one who does.

In my opinion, I'd find the BEST surgeon and worry about logistics later. I have a friend from NY who traveled to Ohio for j-pouch surgery (her doc recommended it) but will see the local doc if she has problems.

I am sure if you ask, where ever you end up having your surgery will recommend someone to use in an emergency when you are at school.
Crohn’s dx 1989
some terrible years before my
temporary ileo in 2001
Proctocolectomy w/end ileo in 2008
...wish I knew then what I know NOW!
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