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Dr. de Buck says call ir message him if I run into trouble and if I need emerg to o ly go to Sinai. My trips down have been futile as he does not cimmunicate back or see .me. I had my pouch 2 1/2 years ago and do not "bother" him much. Scoped my pouch 1 1/2 years ago; emailed me a script once for cholestyramine; went to emerg for presumed partial.blockage behind old ostomy 10 days ago. There was no blockage but some CT comment of soft tissue "collection" at that site and some enlarged lymph nodes. My distention, pain and nausea continue. He knew I was at emerg but did not see me; nor did his fellow and nor did he answer email for the last 10 days. I am ready to give up on him. I am thankful for the surgery, but elusive follow up is no good. Only St. Mike's does J pouch surgery otherwise, so I will go to emerg there when necessary.  Thanks for writing Sharon. All the best.

So sorry Rosallie,

Where are you being followed? Who is your doctor (not that I know them anymore, my generation of doctors have pretty much all retired).

The Mt Sinai IBD center used to be the place to go...Even the mayor went there to be treated by Dr Cohen...but there are still some excellent hospitals and doctors...nowadays rectal cancer can be treated and surgically managed...but do not waste too much time...I know it is shocking, scary and terrifying but moving forward to find a good doctor/surgeon and team is the first step...and surrounding yourself with warmth and love...that is also part of the healing process!

Take care and keep us posted on what is happening

Sharon

Hello Rosellie. I am also an hour from Toronto.  I am very sorry to hear of your diagnosis.  As you are in the Toronto area, I know from word of mouth that Dr. Gryfe at Mt. Sinai is an excellent colorectal oncologist.  I met him once while in hospital. My surgeon was away so he came in to see me.  His demeanour is a little different, but I liked him and heard he cares very much about his patients.  He told me that he was an "acquired taste".  I laughed.  Let me know how you are doing. I'll be thinking of you.

I am being seen by a surgeon in Cambridge. Very nice man but I asked him yesterday for a second opinion just in case. This is my life and I have to advocate for myself. No one else will. He's pretty adamant I need a permanent colostomy and obviously, if I can avoid that, I want to. But at the same time, where the tumor is located is going to make it pretty much impossible to maintain regular bowel functioning. I feel like Toronto would have better specialists, but they're also postponing/cancelling so many things due to Covid and I just want to move on and get this cancer out of me stat before it spreads. I'm Stage 1 right now and want to keep it that way, you know? I'm trying to keep a positive outlook and focus on staying alive for my children and if a colostomy is the only solution, so be it. Thanks for your quick reply and for listening. Scary times. Not my best year, that's for sure! I hope I can look back on all of this craziness in a couple years and laugh?!

I agree with you that expediting an appointment is most important.  See how you feel about the Cambridge doc and take it from there.  My situation is different with a Jpouch.  I will say that there are challenges.  I had an ostomy for a year. Hopefully they can reconnect you after a short time with an ostomy for healing.  The ostomy took some getting used to; more psychologically. However, there were some positives. Ie. No bottom burning and rashes.  As you will be keeping most of your colon (I have none), you bowel movements will not be acidic, so your bottom should be fine.  Keep me posted. I live in Stouffville, but have friends who canoe with us out your way. 

Hi, as I posted a similar message a few years back.  If anyone is looking for another surgeon/Dr at Sinai I cannot recommend Dr. Gryfe enough. 

When I had my surgery and was in the hospital he would go for a run and stop in every day. 

If I ever had follow up questions or concerns I could easily make an appointment and he would spend as much time as necessary (although the wait time could be pretty bad).

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