Hi, I just got your message. I live in London, Ontario. I have a very lonely life. I am still waiting to hear from the surgeon. All tests were done 2 weeks ago. Do you know how long it takes to hear from the surgeon to set a date for surgery?
Willow59
Jan 23, 2018 3:12 pm
Wisteria
Feb 03, 2018 10:10 pm
I do know I will have surgery to stitch the rectum plus an abdominal cut, and it will be a 3-month recuperation and healing process. I will ask if my surgeon has a cancellation list because I am so tired of rectal incontinence because my sphincter muscles have been destroyed by nurses. I am excited to have a life again where I can go places and have a life, after 5 years of being shut in who is stuck in my apt and my bathroom. To me, the pain, no matter how bad it is, will be worth the gain, and my absence of quality of life will be restored as I heal. Were you able to get a surgical date yet? My loneliness has been such a huge part of my depression that if someone hasn't been through it, the depths of it can't be understood, right?
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Posted by: Primeboy
Hi Mike and all. I am not sure how panoramic my perspective really is as my peripheral vision shrinks with each passing year. I can tell you that when I came to this website six years ago I was truly ;impressed by the positive attitudes of so many members, especially the younger folks who refused to let their ostomies define who they were or what they would become. I also came to appreciate that having an ostomy is not the same thing as having a disease. Pardon ;my pun now, but ostomies and cancer don't belong in the same bag. One is a solution, the other is a problem. Celebrating National Ostomy Day ;is also well outside my comfort zone. That's like celebrating National Wheel Chair Day. Come on!
I think there is a ;need for improved ;public awareness of ostomies, but I am not sure how that's best done. There ;remains ;some social stigma attached to our situation, and it's acutely felt among our young. We need to get out of the dark ages on this issue, but not by going 'in your face' to everyone else. I think Bill and NDY are 'spot-on' when it comes to telegraphing the right message to friends and family. People will know how to react when they ;see ;how we accept the cards we were dealt. I also appreciate the contribution some people here are making to this effort through their publications.
On a personal note, my son has been suffering from ulcerative colitis for years just like I did. I am very concerned because people with UC are at a higher risk for colon cancer. Years ago my GI told me to get annual colonoscopies to be on the safe side. I am glad I did because he eventually found pre-cancerous cells which led to several surgeries and my becoming an ostomate. Since then I have always ;conveyed a positive attitude to ;my son about wearing a bag because it has kept me alive to enjoy many more years with my loved ones. I think he got the message. We both go to the same gastroenterologist in NYC and get scoped on the same day. Father and Son moments!
Someone once wrote that our children are the letters we write to the future.
PB
Wisteria
Feb 21, 2018 2:27 pm
Good morning Willow59. I was wondering if you got the date yet for your surgery? My last appointment with the surgeon was on February 5, 2018, and he said that removing the rectum, anus, and everything else below the small intestine (colon is already gone) will be removed and the surgery will be 4 to 5 hours with recovery being about three months with no sitting down, standing, or laying down will be the only two options. I am also still waiting for my surgical date. He is booked at least until the beginning or middle of April, so that is discouraging, and I feel apprehensive because beyond nursing care, I have no family, and just my one very close friend to come and give me some help on the weekend. The nurse I have now once a week said it would be difficult to care for myself alone for the first couple of weeks. I will have home care support (PSW's). I am hesitant but am still going to go ahead. It really is not ideal to be on my own, not just the loneliness, but for practical reasons as well. It makes even small things seem very large and difficult to overcome.
For me, I will just be glad to have it done and can then start the final healing process and rebuild my life. How are you doing? I hope that you finally have received a date for your surgery. Perhaps you have already had it. I stopped going on here for a little while.
The depression and being alone had taken their toll on me and I did not want to discourage anyone else. In my head and heart, I know that those are the times when I need to reach out, but I was very hesitant to do that, as my self-worth and self-esteem had vanished into thin air.
Send me a message if you feel so inclined. I would like to hear how things are going for you. Patience is a virtue that I am still working on.
Janet
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Greyybeard
Jun 10, 2023 8:44 pm
This is an old thread but I thought I would add my 2 cents...
I've had an ostomy for over 50 years. For most of that time, I would have flare-ups once or twice a year. When this happened, I would stop eating and drink Boost or Ensure for a few days until the flare-up subsided. After about 40 years, the flare-ups started occurring more frequently. A few more years and they became problematic.
Since the flare-ups occurred in the rectum, my gastroenterologist suggested that removing the rectum entirely might help. I had already had too much intestine to consider ever having a resection, so I decided to go for it. Because of my previous surgeries, my surgeon, who had over 30 years of experience, described it as one of the most difficult he had ever performed.
Post-surgery recovery was much slower than I had anticipated. Sitting was uncomfortable for several months.
But it has been more than 5 years since my Proctocolectomy, and I have not experienced a single flare-up! I wish that I had it performed decades earlier.