Posted 8/25/2009 12:26 PM (GMT -6)
I'm sorry, I don't mean to get a bit off topic, but Collicat, can you tell me what surgeon you will be seeing? I am from the GTA and I'm just starting this whole process of finding a surgeon. My GI will probably want me to go through his hospital - Toronto General - but I don't know enough to know if a good surgeon is there or not. Do you mind telling me where your son is being taken care of?
Thank you... this whole process is a bit overwhelming.
Posted 8/25/2009 12:42 PM (GMT -6)
Hi Canadian Chick!  I just noticed your post and that u r from GTA!  Me too! (or I was).  I was referred to Kingston General for surgery (Sept/08) by a super colo-rectal specialist...Dr Paul Belliveau.  Honestly, if you can get referred there, his credentials are awesome.  Just google and you will find out so much about his reputation not only as a surgeon but as a compassionate human being as well.  Good luck with this!
Diagnosed IBS 2000
Vaginal Prolapse Surgery 2001
Repeat Vaginal Prolapse Surgery 2006 (the mesh from previous prolapse surgery had let go and fallen into my bowels)...
Removal of mesh from bowels (it was piercing holes all through my bowels and appendix and cecum, causing 2 fistulas and heavy bleeding vaginally and rectally)...mesh was removed, two pieces of large bowel removed and resectioned with a loop ileostomy. 2008
 Ileostomy Reversal March 9/09

Posted 8/25/2009 12:49 PM (GMT -6)
Thank you Cheryl - I appreciate the info. I will google him for sure!
Posted 8/25/2009 1:07 PM (GMT -6)
Hey Canadian Girl. My son has been at Sick Kids until the last month at which point he turned 18 and they moved us across the road to Mount Sinai. His new GI is Gord Greenberg whom we really like. I have heard that some people find him "gruff"...he calls a spade a spade but does so with humor and my son really likes him. The people at Sick Kids told us that they value his opinion more than any other doctor's. His surgeon is Helen MacRae. She is supposedly the best and does the proceedure laproscopically. However, she did come across very cold and calculating which really turned my son off. After speaking with many doctors, including those at Sick Kids who Dillon loves, we have come to the conclusion that those are exactly the personality traits that make for a good surgeon and that it is their hands and capability that are so important and not their smile.
Posted 8/25/2009 10:53 PM (GMT -6)
I too would recommend taking a month off. I needed help for that long. There are things you just can't do alone (and aren't supposed to do). If your work would allow it, I think that is the right amount of time. If you can't take that much time off, maybe another family member could take over.

I forgot about the backaches! and I forgot about alot of the stuff you just reminded me of. lol.
28 yrs. old. married with one beautiful daughter (born 11/20/07)
-diagnosed with severe pancolitis u/c 2002 had total colectomy 12/19/08; emergency surgery due to abscess-had to redo ileostomy and switch to left side 12/25/08; 2/15/09 found blood clot in superior mesenteric vein (prob. from inf. and surgery inflammation)
coumadin, prenatal vit.
(temporary ileostomy....maybe)

"Things turn out the best for those who make the best of the way things turn out."

Posted 8/26/2009 7:28 AM (GMT -6)
Thanks Collicat... I appreciate the info. I wonder if I'll be able to do the surgery through Mt. Sinai, because it's all part of the same Hospital Network.
Good luck to your son, I will be thinking of him.
Posted 9/3/2009 11:29 PM (GMT -6)
Hello to you all. Dillon had his surgery yesterday and all is as well as can be expected. Actually better than I expected. The surgeon told us that Dillon's colon was one of the worst that she had seen and that it absolutely had to come out. I cannot explain to you the sense of calm that I have now. I know that there is still a long road to travel and that there will be bumps in the road but I truly feel, in the end, this will all be history and he will finally be able to move on with his life. To those of you heading in this direction, so far things are easier than either of us imagined. Surgery was three hours but he did spend five hours in recovery due to a low respiration rate, but only time was needed to fix that. He was in a fair amount of pain yesterday, but he has a morphine pump that handled that pretty well. The pain is actually much better today (he is still using the pump but much less) and he has been up walking twice today. The first time was pretty overwhelming, but I truly believe most of it was due to his worrying ahead of time about how awful it was going to be...the reality was that it was much easier than he thought. I am not saying that it has been a walk in the park...far from it...but things have been MUCH easier that we had feared. He still can only have ice chips to suck on and that, for him, has been the worst part of the whole thing. He so badly wants a drink of something. His stoma has started to "fart" so hopefully tomorrow they will start him on some clear fluids. The surgeon has warned us that day 4/5 are very often the worse and not to get discouraged if he seems to start going backward. At least we know this ahead of time.
Posted 9/4/2009 7:30 AM (GMT -6)
Wow that's great that his surgery went well! I amreally happy for u guys... My surgery is in one week, nex Friday. I am starting to get nervous/freaked out at times but then. Just distract myself.. Question, did they do the surg laproscopically? What do his scars look like? Big? This whole time I was thinkin my surg is laproscopically, but just found out it's not.. Thank u so much for posting, it's really helping me know what to expect... I will be in hospital for six days, same withdillon?
my name is Isaac, 24 year old guy, UC since I was 17
remicade for two years, worked OK but got married and was told it could cause birth defects so I quit feb 08. my wife reminded me that i still had D most of the time while on remicade.
ALWAYS sick with something either mild or serious, all related to UC and the medication
Wanted to start a family Jan 09 so dr stopped 6mp, wife got preg in may so I am back on 6mp also lialda and 20 mg pred

we will have our new baby January 25, 2010 :)

1st stepj pouch surgery is scheulded for sept 11, 2009! soon i will be med-free! Will have part two around November 11 if all goes well, dr said I will stay home from work for three months, oh and I'm getting laid off, last day of work is march 26, 2010, just enough time...

Posted 9/4/2009 8:18 AM (GMT -6)
Collicat - so happy you posted to let us know that Dillon did so well. We have been checking frequently to see if you had had a chance to post. The thirst is amazing, but soon he will be able to get something to help that. It's great that his stoma has already started to work. That is really a great sign. Day 4 or 5 might be tough but mostly because the reality begins to set in, but I think you're prepared for that.
to update you on anthony so you can look forward a bit. He is now 23 days post 2nd stage. It has been a journey because one thing he didn't epect was a need to evacuate (through the little bit of colon he has left) a lot of drainage. He feels a frequent urge to go, even though he passes a minimal amount. Though frustrating, his surgeon says it's actually very encouraging becaus it means his sphincter muscles are still working well. But this symptom is slowly slowing down and the good news is that he is now at the beach with his girlfriend for 5 gets better. Good luck and PLEASe keep us all posted.
Posted 9/4/2009 8:20 AM (GMT -6)
I'm so glad to hear Dillons surgery went well! Since he has a morphine pump, I'm assuming it was open surgery? Kudos to him for getting up and walking twice! I remember that was the LAST thing I wanted to do in the days right after surgery, but it is so necessary. My fingers are crossed that he'll get to have clear liquids soon. And best wishes for a speedy recovery!
Diagnosed w/IBS: Oct. 2006  Diagnosed w/UC: Jan. 2007 (proctitis), July 2008 (pancolitis)
1st Surgery for J-Pouch: May 22, 2009 - need 2 more surgeries, dates TBD
Medications: Canasa Rowasa enemas; Lialda; Prednisone; Protonix; Remicade; Zyrtec-D; Toprolvarious pain meds post-surgery;
Supplements: Women's One-a-day multi-vitamin; Super B-complex
Current Status: Aug, 2009 - Recovering from the 1st stage of J-Pouch surgery; temp ileostomy; 2 more surgeries to go as there was too much damage to create a J-pouch

Posted 9/4/2009 8:20 AM (GMT -6)
Hey Ruissarr. Please don't get too nervous. You can see from my posts that that is exactly how we were feeling last week and surgery was so the right thing to do. Dillon's surgery started out laproscopically but at the end when they were taking the bowel out the surgeon was concerned due to how inflamed the colon was and she made about a three inch incision. He has two tiny holes, two stapled incisions about 2-3 inches each and the stoma. He was very worried to see his belly the first time but both he and I again think that it is not near as bad as we had thought it might be. The stoma is going to take a little getting used to but again not a really big deal. I cannot stress enough the improvement over Tuesday when he was having bloody D every 45 min. The surgeon was just in and said that she would see us Tuesday after the long weekend so that means we are at least here until then...that would be 6 days. Ask anything and we will try to answer. I will try to get Dillon on to talk to you if you would like. All the best, Cathy
Posted 9/4/2009 10:44 PM (GMT -6)
Hurray. Glad to hear things are going well so far for Dillon. I pray things only get better for him.
28 yrs. old. married with one beautiful daughter (born 11/20/07)
-diagnosed with severe pancolitis u/c 2002 had total colectomy 12/19/08; emergency surgery due to abscess-had to redo ileostomy and switch to left side 12/25/08; 2/15/09 found blood clot in superior mesenteric vein (prob. from inf. and surgery inflammation)
coumadin, prenatal vit.
(temporary ileostomy....maybe)

"Things turn out the best for those who make the best of the way things turn out."

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