Meeting with a pediatric surgeon

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Bennie
Veteran Member


Date Joined Nov 2006
Total Posts : 552
   Posted 4/30/2008 7:16 AM (GMT -7)   
Hi. My daughter has UC. She is in her 3rd flare. She is back on steroids (blech!), had 2 Remicade infusions and still not in remission.  Her doctor wants us to consult with a pediatric surgeon because he is concerned that the Remicade will not work.  We have already discussed this because of possible dysplasia although we were hoping to consult with a surgeon while she was in remission. So while this is a whole new terrifying step, it has also been in our minds.
 
So my question to all of you, what should we ask?  What should we bring?  What should we tell him?  We would like to be as informed as possible prior to making any decisions.  The doctor works out of LIJ-Schneiders Childrens Hospital.  I know they have a great reputation but not sure specifically about colorectal surgery. 
 
Thanks in advance for your help.  I've been reading your posts for awhile (only posted here once).  I am usually on the UC forum.  I must say this forum is probably one of the most positive ones I've been on considering what everyone is going through.  It makes the possible future much more bearable and optimistic for us.
--Mom of bratcat (17 years old)--
Daughter bratcat was diagnosed with pancolitis October 2006
Current meds:
Asacol - 4 pills/3Xday, 2 tabs 6-mp/1.5 tabs 6-mp every other day, 50 mg prednisone
 
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!


Lew1201
Regular Member


Date Joined Mar 2007
Total Posts : 111
   Posted 4/30/2008 8:31 AM (GMT -7)   
My son (18) just had step one of surgery and things went well.  I would make sure that they can do surgery laproscopically as it makes the recovery much easier.  We did lots of research and my son was OK with the surgery.  He's been sick for 2 plus years and just wanted to get on with his life.  Needless to say they have already missed out on times that should have been fun and carefree and have had to deal with way more than anyone should have to, let alone a child.  Stay positive and help her to feel good about her decision. I think that it's helped my son alot that we have gone about this rather matter of fact and our goal is to get him back to "normal" so he can get on with the rest of his life.  Good Luck!!!!

Mother of 18 year old son
Ileostomy on April 18, 2008
 


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 4/30/2008 8:03 PM (GMT -7)   
i know this sounds really hard, and you are probably doing this already, but it is most important that she doesn't see you and the rest of her family too upset about it.
anyway, you should ask if she is a canidate for j-pouch, and if so two step or three stop. I think it would be good to try to see and ET nurse also, if you can, they have alot more info on ostomies than the surgeon, lol. I got sick when i was 21, older than your daughter, but still i missed out on a lot of fun and things i should have been able to do. If i could go back i would have rather been young and with an ostomy than without one and sick and missing everything.
if she doesn't read on here, i think it would be good if she did, and she could read how happy we all are, and also, i am sure she is worried about it showing, so ya'll go look at the photobucket bage, the user names is crohnsdisease password is 6mp3asa

Bennie
Veteran Member


Date Joined Nov 2006
Total Posts : 552
   Posted 4/30/2008 10:34 PM (GMT -7)   
Lew, I am glad your son is on the mend.  When she is in a flare, she just wants it over so she can get on with her life. (And when she is in remission, she is a powerhouse!)
 
Summerstorm, thanks for the advice. We are very open and upfront about the whole situation (as is her doctor). We had done quite a bit of research so when he first mentioned possibly seeing a surgeon because of dysplasia, we were prepared.
We have looked at the photobucket page and that, along with the mostly positive outcomes here, have really helped.
 
She has really approached this whole UC stuff with a very positive attitude. She was dealt this disease and she (along with our support) will fight it and win. She reads the UC forum daily (posts once in awhile). I think she glances here but not as often.  I have looked at pictures people have posted about their ostomies (found through this forum). She admits she is just not quite ready. But she can tell you all the technical stuff about them! One step at a time. She also has the support of some amazing friends. All that will get her through this.
 
If you think of anymore questions to ask, please let me know.
--Mom of bratcat (17 years old)--
Daughter bratcat was diagnosed with pancolitis October 2006
Current meds:
Asacol - 4 pills/3Xday, 2 tabs 6-mp/1.5 tabs 6-mp every other day, 50 mg prednisone
 
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 5/1/2008 6:25 PM (GMT -7)   
this wouldnt' be for the surgeon, but if she decides to go for the ostomy, when she sees her ET nurse, she should wear clothes like she really likes to wear, i took my fav pair of pants with me when i went and tried them on to make sure the stoma was in the right place for the kind of clothes i like to wear. i know you aren't that far along yet, but i thought if i didnt' say that now iwould forget!

suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5698
   Posted 5/2/2008 5:54 AM (GMT -7)   
If your daughter is seeking a jpouch then I highly recommend you ask your surgeons questions in regard to how many procedures he/she has performed. It's more important to get a qualified surgeon than to concentrate on finding a pediatric surgeon, a laprascopic surgeon, or a surgeon who has great bedside manner. Experience is critical with this surgery. It's complicated and complex. I would also ask to speak with patients of your surgeon who have had similar surgeries. Other good questions are what can be expected in the first year of recovery and what type of follow-up is needed thereafter. Certainly since your daughter is young you will want to talk about the risk of surgery with potential fertility.

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

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