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Posted 5/30/2011 9:04 PM (GMT 0)
i live in virgina and i am typig this while sitting in the hospital waiting on this flare to calm down enough so i can go home. i am at the point in my life that i am seriously considering the j-pouch surgery and thought i would reach out for support. anyone know of good surgeons in virignia? there is a good one in my hometown but want to also get a second opinion just in case. any help or comments would be appreciated... i am new at this and not sure how it works.

dx: moderate/severe UC in July 2008

been hospitalizied 3 times

i have taken rowasa, canassa, asa, sulfasalizine, colazol, lots of prednisone, 6MP and i was in remission with Remicade until 8 days ago!!

HELP

Posted 5/30/2011 9:22 PM (GMT 0)
Hi momof,

Basically, surgery is done when a person has reached the end of all the medications they give for uc, and the last one stops working. It sounds like it's time for you to discuss surgery with your doctor.
I only mean discuss. You can ask all your questions, and make a decision when you feel like you know everything you need to know.
I do not live in the States, but I went to a university hospital in my city, because the doctor is at the top of colitis research, he has many years of experience with colitis patients and in several different countries, and he is involved with international research. I don't know where in Virginia you live, but I just checked the web and found this university hospital with a department specializing:

http://www.medicine.virginia.edu/clinical/departments/medicine/divisions/digestive-health/patients/clinics/bowel/?searchterm=colitis

I see that Dr. Behm there specializes in inflammatory bowel disease and maybe some of the other do as well.. This hospital also does laproscopic surgery, so they don't cut right up your abdomen. I have a six-centimeter line just above my pubic hair, smaller than a c-section.
Anyway, what I recommend is that you go there for examination and consultation. You can take all your medical records from the hospital you are in now. You can also request an appointment with the surgeon, and he can explain exactly what he does. It really helped me to know as much as I could before the operation.
Sending my best wishes that you feel better and this flare clears up so you can go home!
B'derech

Posted 5/30/2011 9:31 PM (GMT 0)
thank you so much for replying!! Dr Brian Behm is actually my GI doctor... funny. He is not on board with this and neither is my PCP because they want me to keep medicating but as a working mother of a 4 yr old and wife I feel as though I am wasting my time going through this. I have a call into Dr Behm to set me up with an opinion for surgery even if it is against his "will" and i will be sure to keep you posted. Dr Behm is great but i need HELP! i live 2 hours from UVA and the surgeon in my homeotwn is awesome but have been advised to make a second opinion appt... cant hurt right??!?
Posted 5/30/2011 9:54 PM (GMT 0)
I would say you really need to have a second AND a third opinion.

I got three, and the third was from a gastro who usually wants to give meds and not operate, and she said I should have the surgery within a few weeks. I didn't just have uc, but also had a long nasty stricture in the colon that would probably have closed in completely within some months.

But you definitely owe yourself 3 opinions. Behm  should respect that and refer you to equally ranking colleagues.

There two kinds of doctors - the kind that want to use surgery as absolute last resort and give the patients nuclear warfare medication. Then there is the other kind that sees surgery as a way to prevent all kinds of nasty things from happening, and also to spare the patient further flares (that are getting worse) despite intensifying the drug therapy.

Your attitude about the surgery is really great, it's great that you are keeping the big picture in front of you. People in their 20's heal really fast. Living with the stoma and the bag is quite a trip mentally and emotionally, but only in the beginning, and it's only for a few months anyway. Afterwards, you'll be there for your daughter much more than you can now.

Posted 5/31/2011 1:12 AM (GMT 0)
Hey, I live in Roanoke, VA. I don't trust UVA so I'm driving 3 hours for surgery at Duke University in Durham, NC. If you can't make it to mayo or cc, I've heard good things about Fairfax colorectal. As far as surgery goes, post after post that I've read says their only regret is not having surgery sooner. That's why I'm not postponing surgery any longer. I could try more meds but it's just not worth it to me, I want my life back! I picked my surgeon not based on where but on their personal history. She trained at Mayo, MN and has done a ton of pouches. You can find great surgeons here and there if you do some research. Best of luck whatever you decide!
Posted 5/31/2011 1:22 AM (GMT 0)
i live in roanoke as well... who is your GI doctor in town? i gave up on rke gi's 2 and a half years ago. good lucj with surgery and please keep me posted........i am at the breaking point!!
Posted 5/31/2011 2:58 AM (GMT 0)
There are great surgeons in VA. Go to www.j-pouch.org and ask for referrals from those that have had surgery.

Sue
Posted 5/31/2011 12:40 PM (GMT 0)
I gave up on Roanoke GI's as well. I had Dr. Lee and Dr. Van der Linden. They both were... well, frustrating to say the least. Who did you see and where do you go now for a GI? I know Roanoke has Dr. Munson for a colorectal surgeon but he only does open surgeries and I'd prefer laproscopic.
Sue, I've posted on j pouch for VA surgeons with very little response! No one wants to refer anyone in our area! Probably a reason for it!!!!
Posted 5/31/2011 12:46 PM (GMT 0)
I was seeing Dr Dennis Weiserbs.... what a quack.. couldnt see anyone else as they were too busy for my needs at the time. Dr Munson is a good family friend and though if i decide to have surgery i will definatly let him do it but would like a second opinion just to see. although Lapo sounds good. thanks for writing to me i have really enjoyed entering this blog. keep me posted
Posted 5/31/2011 1:12 PM (GMT 0)
Dr. Colvin in Fairfax gets good reviews.

Sue
Posted 5/31/2011 2:56 PM (GMT 0)
Well, I'm heading down on Thursday for my pre op appts and surgery on 6/8! I made the appt 2 months ago and it's the longest two months of my life! Once I decided on surgery, I wanted my colon out NOW! :) Thanks for the hint on Weiserbs, I'll check him off my list of docs to try! He WAS on my list! I might try Rubio, the only female GI under my insurance... that is if I ever need a GI anymore? I might just deal with my surgeon from here on out. If you do end up at RMH, momof1, I wish you the best! I had a horrible experience there and have gone to Lewis Gale ever since.
Thanks Sue, I think Dr. Colvin is with Fairfax colorectal and is one I've heard of as well.
I was supposed to go to UVA to get tested since I was resistant to all meds, however, I'm so sick of tests! I just thought even if they found something that will work, how long will it work? Then, how old will I be looking at surgery again down the road and how much harder will it be on me then. I hope you get well without surgery. I think you'll know when you're ready (if ever) for surgery. I knew 100% that I was just done with the meds and the pain. Sure, it'll probably take me another year, 3 surgeries, and many trials before I'm back on track with my new j pouch but I think It'll be worth it. They aren't sure I don't have crohns though. The Roanoke GIs are saying crohns colitis. Right now the only inflammation is in my large intestine. My fingers are crossed that I only have colitis!
Posted 6/1/2011 7:32 PM (GMT 0)
going in today for another surgery consult, meeting the stoma nurse tomorrow and trying to swallow my fear and do this!!! time to take my life back!
Posted 6/1/2011 9:38 PM (GMT 0)
My 19 year old daughter is going through the surgeries (has had two of three steps) at the Cleveland Clinic. A lot of people on this forum have gone there as they are the number one place in the world for j-pouch surgeries. We live in New York and it is a 6 hour drive. It's definitely not convenient and we've had to go back for complications but I feel like she is in the best of hands. You might consider a consult there or at least read up on Cleveland Clinic's success rate with j-pouch. ~Lynn
Posted 6/2/2011 12:18 PM (GMT 0)
Hope all goes well with the surgeon and the nurse. Congrats on taking this big step!!
Posted 6/3/2011 7:11 PM (GMT 0)
     Not familiar with docs and hospitals in VA but am sure there are many as Suebear states.

     I  just wanted to mention that my GI doctor  wanted me to try more and more meds also.  He sent me to another GI specialist at the Univ of Pa Hospital in Philly (I live in South Jersey), but all he did was brag about all the papers he has written on UC rolleyes  .   I ran the gamut of meds for my ulcerative proctitis....6MP, Remicade, Humira, rectal meds, Colazal...you name it.  After twelve years of suffering, I had enough.

     I found my colorectal surgeon online.  I looked up colorectal surgeons in Philadelphia.  Dr. Fry trained at the Cleveland Clinic and is head of colorectal surgery at the Univ of Pa Hospital.

     Needless to say, I have yet to return to my GI doctor and my surgery was last June 28th.

     Best thing to do is research your colorectal surgeon and the hospital where the surgery will be performed.  Good luck!

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