anyone from toronto?
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Yes and no...was from Toronto and had my k pouch created by Dr Z Cohen...am in and out now.
I am in Toronto. Was wondering if there was a support group. I had takedown about 7 weeks ago.
Who did your surgery? Where was it done?
Dr Gryfe at Mt Sinai. Cohen was on a medical leave. But Dr Gryfe was amazing. Never met a Dr with better bedside manner.
Other than the wound opening up after the first surgery (which is pretty common) and taking a while to heal it was quite routine.
Sounds really good...it is nice to know that there is someone good taking over for Dr C when he is away...
How are you doing now?
Anyone in Mississauga. I had my surgery at Mt Sinai in'86 By Dr Stern.
My reply is so late compared to your dates. Had my J pouch surgery at Sinai as well. I was Dr. Cohen's last patient before he retired in July 2017. His successor Anthony de Buck did the surgery with Dr. Cohen. I have had ups and downs. I am 64.
So sorry to hear that things are not going well...is there anyone at Mt Sinai that is still taking care of us? Is Dr Cohen's IBD center still active?
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.
Such a sad state of affairs...Mt Sinai used to be the best that there was under Dr Cohen...he loved his patients and cared for them so well.
Take care, find a good, conscientious doctor and make sure that they treat you right!
I loved Dr. Cohen as well. So warm and caring.
I'm an hr from Toronto. Feeling pretty alone. Just got my diagnosis of rectal cancer the other day and had another scope today.
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
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).
Thank you for your messages. Nice to know there are people out there who have experienced the same thing. Feels like I'm the only person in the world I'll know with a bag
I thought the same. I was wring. There are many.
You guys are soo lucky to be in Canada! I wish we were there lol
Canada rocks Lauren!
Canada rocks Lauren!
I bet! You guys have great healthcare and your money is pretty too
Queen Elizabeth is your leader right???
I live about 2 hrs north east of Toronto. I had my surgeries in 2015 and 2016 at St. Michael's Hospital by Dr deMontbrun. She has since moved to Oakville and allowed me to follow her there. She's an amazing surgeon and person. Had j pouch surgery in 2016 and take down Nov 2016. She also referred me to my new Gastroenterologist Dr Fine, also in Oakville. So far he has been great and seems to really care. Still 2 hr drive but worth it. Oakville Hospital has been great too for tests etc.
I was doing pretty good until 2020. Its been a struggle and we are now trying Remicade.
Hi there. I also live 2 hours north of Toronto. Just moving next week to Bracebridge. I have had many ups and downs with my Jpouch. (2017/2018) at Mt. Sinai. I have had chronic pouchitis for years and am on Amoxcil/Clavulin daily as a permanent solution. The Flagyl I was on prior stopped working and, I fact, made my symptoms worse. I have had the best few months of late and carry on with my sports. If I go off antibiotics for just a few days, I am an inflamed mess again. I am 66.
I hope you are improving on Remicade.
I live just north of Peterborough.
Remicade seemed to help at first but not now. See doctor next week.
Hope you stay well.
I hope your doctor can find an alternative that will work better for you. Peterborough area is lovely. We did a canoe race there a few years back.
Wishing you the best. Gail