Met 2nd surgeon for another opinion

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Bennie
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Date Joined Nov 2006
Total Posts : 550
   Posted 6/16/2008 4:28 PM (GMT -6)   
Awhile ago I wrote that my daughter (17 years old) had seen a surgeon. We liked him alot. He prefers to do the surgery in 3 steps and not laproscopically. We decided to meet another surgeon (also thought it important to get a 2nd opinion).
We saw the 2nd surgeon today. This is his area of expertise. He has performed these surgeries for 20 years. He trained under Dr. Fazio from the Cleveland Clinic. We liked him alot. He also does not perform the surgery laproscopically. But if he feels the patient is healthy he does the surgery in 2 steps. He did a small scope of my daughter (a few inches up) and said it shows no inflammation...yay!. So that would cut out one surgery right there.
The 1st surgery (1st surgeon) is scheduled for June 27. The 2nd surgeon could do it on July 3 (one week later). My daughter would rather just have it done tomorrow to get the ball rolling (the waiting is making her crazy). yeah
The hospitals are about the same distance for us.
In some ways we are leaning towards this 2nd surgeon. I have to let them know soon because they want to officially book the date for either my daughter or someone else. I would also have to cancel the 1st surgeon.

Any input?
--Mom of bratcat (17 years old)--
Daughter bratcat was diagnosed with pancolitis October 2006
Current meds:
Asacol - 4 pills/3Xday, 15 mg prednisone, Remicade
 
11/14/06 - started prednisone; 1/28/07 - finished prednisone!
3/3/07 - began to taper off hydrocortisone sloowwly! Summer 2007 - slowly began tapering Rowasa. 9/07 -- flaring? Nightly Rowasa. 9/21/07 -- added hydrocortisone enemas. 9/30/07--added prednisone. 10/31--started 6-mp, stopped the enemas. Started lowering prednisone. 3/08-another flare!


ediekristen
Veteran Member


Date Joined Apr 2007
Total Posts : 1366
   Posted 6/16/2008 6:06 PM (GMT -6)   
Personally, I would go for the two steps. Any reason they won't do it laparoscopically?? Definitely go with your gut feeling though!! :) Good luck
Female, 22, Ulcerative colitis (pancolitis) since 1999; GERD; gastritis; osteopenia in hip & lumbar region of the spine from long term prednisone use.

Current Meds:
10mg Lexapro (for depression/social anxiety)
Digestive Advantage: Crohn's and Colitis formula (2 pills per day, started 5/14/08)
125mg Azathioprine
4800mg Asacol (Four 400mg tablets, three times a day)
 
 
 


Slice
Regular Member


Date Joined May 2004
Total Posts : 277
   Posted 6/16/2008 7:11 PM (GMT -6)   
From my experiences with surgeons and the operations i've had, most of these surgeons end most of thier sentences with ' but we'll have a better idea once we're in there'. Keep all your options open. They can be the best surgeons around, but it sometimes doesn't even go as they plan.
As far as i know ( i'm not a doc ) the 3 steps are usually to let certain areas heal up before moving on. The insides can only take so much at a time.
Good luck.
Bagged in Aug '06
@ssless since Nov '07
CELTICS BRINGING ANOTHER TITLE HOME


Charlotte Gilman
Regular Member


Date Joined May 2008
Total Posts : 100
   Posted 6/16/2008 11:25 PM (GMT -6)   
I know I said it before, but I really do feel that the laparoscopic version of this procedure is worth traveling for. It's not just cosmetic--less cutting means less scarring means lower risk of obstruction, which is terribly painful and can required more surgery. That risk, if I am remembering the numbers right, is about 20% with the open version of the surgery. I considered that too high.

Good luck no matter what you guys decide! It's got to be better than what she's been experiencing so far.

suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5690
   Posted 6/17/2008 7:00 AM (GMT -6)   
However, thousands of us have had traditional open surgery and not suffered any post op complications. I would go with the best surgeon, the one who has had more experience, over the style of surgery.

Sue
dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free


ildivo
New Member


Date Joined May 2008
Total Posts : 4
   Posted 6/17/2008 8:07 AM (GMT -6)   
Hi Bennie,
 this is a worrying time for you. On our experience here in UK, my husband had a sub total colectomy on May 6 and we have had a roller coaster ride of emotions since then.  My husband was readmitted with spectacular vomiting and severe pain due to adhesions at the site of the surgery (2 blockages). Every surgery carries this risk so if you can get away with one invasive procedure, the chances of these adhesions happening are substantially reduced.
The very best of luck to you and your daughter, whatever option you choose, I hope the outcome is a huge success.
 
Ildivo :-)

Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 6/17/2008 12:15 PM (GMT -6)   
I would definately go with the specialist!  In my opinion, that would be worth waiting one week...the knowledge that he has should not be overlooked.  I know it will be hard to convince your daughter, but it would be worth it in the long run.

ucRick
Regular Member


Date Joined Jun 2007
Total Posts : 75
   Posted 6/17/2008 12:46 PM (GMT -6)   
Hi Bennie,
 
I know it's a tough choice when seeing different surgeons for this type of surgery.
I had consultations with 3 before my surgery last fall.  The hard part was that I liked all three.
I think that you just have to go with the one you feel best about.  Two of the three that I saw would have done the surgery laproscopically assisted but the surgeon that I went with did the surgery open.
I was more concerned with the long-term outcome, even though the short-term recovery was tough.
But I know that with the right surgeon, the long term outcome can be good with either laproscopic or open.
All that to say that I'd go with the surgeon that you really want to, even if it means delaying a week.
 
Rick
54 yr old male, UC since 1978
800mg Asacol x 3 daily
500 mg Pentasa x 4 daily
Multivitamin
Boniva(for osteoporosis)
600mg calcium + 200 iu Vit. D x 3 daily
Advicor(for cholesterol)

Sub-total colectomy with ileo-rectal anastomosis 9/5/2007


Charlotte Gilman
Regular Member


Date Joined May 2008
Total Posts : 100
   Posted 6/17/2008 4:32 PM (GMT -6)   
I hope it goes without saying, but I completely agree with suebear about the surgeon's experience level. I'm just saying that if you've got the time to shop around and are in a position to try for it, the laparoscopic version may be worthwhile.

I am hoping to avoid bad outcomes (like obstruction), but also to avoid the sense that I could have done more to avoid them. If I'm laying in a hospital bed with an NG tube (one of my least favorite experiences so far, I must say), I don't want to be thinking: "Maybe if I'd had this done the other way, this wouldn't have happened"! Not everyone's head works that way (nor should they, probably). But mine definitely does.

Bennie
Veteran Member


Date Joined Nov 2006
Total Posts : 550
   Posted 6/17/2008 8:07 PM (GMT -6)   

Thank you everyone for your replies and support!
We are going to go with the 2nd surgeon we saw. I have to call tomorrow to confirm the surgery date (July 3) and tell the 1st surgeon that we are not having him do the surgery. Hopefully this won't mess up our insurance too much because I am sure the 1st doctor has started the pre-surgery information.
I spoke with a patient of the 2nd doctor. She was 16 when diagnosed with UC and 19 when she had the surgeries. She was pretty close in age to my daughter now. She sounded so positive and happy that it was a very calming phone call. I know my daughter may have complications but we are going into this with open eyes and positive outlooks. 

So here is my next question. The 1st surgery was to be at a childrens hospital because the doctor is a pediatric surgeon. My daughter would have been on an adolescent floor. The 2nd surgeon could put her on a regular surgical floor (adults) or a pediatric floor (he treats all ages but mostly adults). My daughter is much more comfortable around kids (even if they are younger). She isn't really comfortable around older, sick people (never been great with the nursing home visits). (What's going to happen when we are old and feeble?   tongue )
So do you think there are positive and negatives to being on the pediatric floor?  I know me staying on the ped. floor will be easier. I would think it has more "happy" atmosphere.


--Mom of bratcat (17 years old)--
Daughter bratcat was diagnosed with pancolitis October 2006
Current meds:
Asacol - 4 pills/3Xday, 15 mg prednisone, Remicade
 
11/14/06 - started prednisone; 1/28/07 - finished prednisone!
3/3/07 - began to taper off hydrocortisone sloowwly! Summer 2007 - slowly began tapering Rowasa. 9/07 -- flaring? Nightly Rowasa. 9/21/07 -- added hydrocortisone enemas. 9/30/07--added prednisone. 10/31--started 6-mp, stopped the enemas. Started lowering prednisone. 3/08-another flare!


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 6/17/2008 8:44 PM (GMT -6)   
well i gotta tell you that the stay in the hospital is probably not gonna be happy regardless, lol. Other than having my son i have never had a happy visit, and even that wasn't all that great, lol. She will have a private room probably so it won't really matter who else is on the floor. I wouldt' let that worry you at all.

Booka
Regular Member


Date Joined May 2008
Total Posts : 60
   Posted 6/18/2008 6:41 AM (GMT -6)   
Hi bennie,
Mydaughter is only 11 ,so we have always been in a childrens hospital,or a pedatric floor...like summerstorm said being in the hospital is,nt always fun...but w/ a chilrens hospital or peditric floor they are great...they work w/ my daughter and me...If we had to pick we would pick peds floor!! Good Luck,you will be in my prayers!!
Krista(Booka)

Bennie
Veteran Member


Date Joined Nov 2006
Total Posts : 550
   Posted 6/18/2008 10:34 AM (GMT -6)   

I booked surgery with the 2nd surgeon for July 3. Unfortunately it means waiting another 6 days but I think this is the right decision. I did request the pediatric floor. The office manager said it shouldn't be a problem. I contacted our insurance company to let them know we were switching surgeons so they could start a claim. I spoke with the 1st surgeon's office and explained that although we thought the world of the doctor (and would recommend him, we felt the other surgeon was better suited to Bratcat). The office manager there was wonderful and made me feel comfortable with our decision (I hate ruffling feathers).

Charlotte, even though Bratcat is currently healthy (or at least almost in remission) we are trying to plan surgery at the early part of the summer so she can recuperate before school starts.  It would have been great to find a surgeon that would do it laproscopically but even though this isn't emergency surgery, we felt we were trying to beat the clock, so to speak. I am sure at some point I will be saying "Why did I allow this?" and have those would have, could have, should have talks with myself. eyes

So my new concern is that the surgery is Thursday, July 3 and the doctor will be away Friday, Saturday, Sunday. He has 3 associates in his office (we have not met). But while we were in consultation with him, we saw the interaction between the doctors. Another doctor (not with the group) called from surgery needing help. Between the 4 doctors, a decision was made about who would go. It was very professional and took just a few minutes before one of the doctors was out the door to the hospital. For some reason, even though the surgeon will be away in the beginning, I feel comfortable. Could it be ignorance? Delusion? Intuition? Who knows. :-)


--Mom of bratcat (17 years old)--
Daughter bratcat was diagnosed with pancolitis October 2006
Current meds:
Asacol - 4 pills/3Xday, 15 mg prednisone, Remicade
 
11/14/06 - started prednisone; 1/28/07 - finished prednisone!
3/3/07 - began to taper off hydrocortisone sloowwly! Summer 2007 - slowly began tapering Rowasa. 9/07 -- flaring? Nightly Rowasa. 9/21/07 -- added hydrocortisone enemas. 9/30/07--added prednisone. 10/31--started 6-mp, stopped the enemas. Started lowering prednisone. 3/08-another flare!

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