The Colon Club

So I just spoke with my surgeons PA about my surgery which is scheduled for 8/20. She informed me my whole rectum would be removed which was news to me. I do not remember getting that news. The surgeon said she should be able to hook me back up. I am spiraling about having the whole rectum removed bc I’ve read on here so many people having issues afterwards. Can any of you let me know your experiences with this? I am having a hard time with it. Thank you

Cmarie03 wrote:So I just spoke with my surgeons PA about my surgery which is scheduled for 8/20. She informed me my whole rectum would be removed which was news to me. I do not remember getting that news. The surgeon said she should be able to hook me back up. I am spiraling about having the whole rectum removed bc I’ve read on here so many people having issues afterwards. Can any of you let me know your experiences with this? I am having a hard time with it. Thank you

I think it would help if you were to update your signature so that it contains full, accurate, technical terms pinpointing your precise diagnosis and precise treatment plan, including the precise location of your tumor within the rectum, the technical name of the "big surgery" scheduled for August, and clarification of the term "whole rectum". I think you need to avoid using general terms like "big surgery", and instead use the relevant technical medical language. Perhaps your sister-in-law or your brother could help you with this since they have been trained in medicine.

I think it would be especially useful for you to learn to use the technical anatomical terms relevant to your upcoming surgery so that you can understand the full extent of what is being planned for your upcoming surgery, and so that you can counter with a reply using technical terminology when someone like a PA says something very general like "whole rectum".

Here are two annotated diagrams containing technical terms:

Uro-genital system, ...Anal/rectal anatomy

Here is a prior post outlining some of the surgical options for Very Low Rectal (VLR) tumors:
https://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=62467&p=492427#p492427

Here is a post mentioning a successful surgery for a very low rectal tumor:
https://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=62441&p=492363#p492363

What?? I would want my surgeon to discuss the surgery with me in person. I would definitely get another opinion.

Cmarie03 wrote:So I just spoke with my surgeons PA about my surgery which is scheduled for 8/20. She informed me my whole rectum would be removed which was news to me. I do not remember getting that news. The surgeon said she should be able to hook me back up. I am spiraling about having the whole rectum removed bc I’ve read on here so many people having issues afterwards. Can any of you let me know your experiences with this? I am having a hard time with it. Thank you

Mine was removed, cancer was too close to the muscle. I’d check the information on hooking you back together, usually impossible if the rectum is removed.

That happened to me. It’s a way to address low rectal tumor. In my case the connect directly to colon so it’s called a coloanal anastomosis. It sounds like that is your case. It’s a way to “preserve” the natural bowel movements as opposed to a colostomy bag. It’s also generally associated with high levels of LARS ( lower anterior resection syndrome). It can be a huge impediment to your lifestyle which is why some people opt for a colostomy afterwards. Some people also do daily enemas in order to get back their previous lifestyle with some level of success.
My experience is the LARS simply sucks and you should check out the topics discussing this and the potential outcomes/solutions on this discussion forum. There is a tremendous amount of info that most doctors will sadly never tell you.

Good luck and always ask questions. It’s your body and your life and you will be dealing with the consequences, so please advocate as much as possible for yourself!

Phillypatient wrote:... My experience is the LARS simply sucks and you should check out the topics discussing this and the potential outcomes/solutions on this discussion forum. There is a tremendous amount of info that most doctors will sadly never tell you...

Cmarie03- My suggestion, too, would be to start educating yourself about LARS right now if it looks like you will be having a colo-anal anastomosis,or an Ultra-Low Anterior Resection (ULAR), or a J-pouch surgery, etc. These types of surgeries, with a very low re-connection, are likely to trigger some degree of LARS, and the sooner you start educating yourself about the problem the better.

Jeanee Wright wrote:LIVING WITH LARS (Website)

RESOURCES:

• Colorectal Cancer Site: on LARS
• UK Bowel Cancer Site
• Clinical Report on LARS
• Podcast Discussing LARS
• National Association for Continence
• International Continence Society
• Bathroom Scout- Worldwide Bathroom Finder App
• Got to Go Restroom Finder App
• Charmin’s Sit or Squat Restroom Finder App
• Suicide and Depression Lifeline
• Coloplast Managing Resection Toolkit
• Living With Low Anterior Resection Syndrome
  PDF file download: lars-patient-guide-amended-feb-24-2019-2-2

MANAGEMENT TIPS:

• Strategy 1- Diet
• Strategy 2- Exercise and Exercises
• Strategy 3- Biofeedback
• Strategy 4- Sacral Nerve Stimulator
• Strategy 5- Mindfulness
• Strategy 6- Medications and Supplements
• Strategy 7- Lower Colon Irrigation
• Strategy 8- Bowel Training Program
• Strategy 9- Skin care- Prevention and Management
• Strategy 10- Practicality Tips
• Strategy 11- Returning to Work
• Strategy 12- Sex and Intimacy with LARS
• Strategy 13- Alternative Medicine
• Strategy 14- Professional Support

https://livingwithlars.com/about-us/
Jeanee Wright

Green Tea wrote:

Cmarie03 wrote:So I just spoke with my surgeons PA about my surgery which is scheduled for 8/20. She informed me my whole rectum would be removed which was news to me. I do not remember getting that news. The surgeon said she should be able to hook me back up. I am spiraling about having the whole rectum removed bc I’ve read on here so many people having issues afterwards. Can any of you let me know your experiences with this? I am having a hard time with it. Thank you

I think it would help if you were to update your signature so that it contains full, accurate, technical terms pinpointing your precise diagnosis and precise treatment plan, including the precise location of your tumor within the rectum, the technical name of the "big surgery" scheduled for August, and clarification of the term "whole rectum". I think you need to avoid using general terms like "big surgery", and instead use the relevant technical medical language. Perhaps your sister-in-law or your brother could help you with this since they have been trained in medicine.

I think it would be especially useful for you to learn to use the technical anatomical terms relevant to your upcoming surgery so that you can understand the full extent of what is being planned for your upcoming surgery, and so that you can counter with a reply using technical terminology when someone like a PA says something very general like "whole rectum".

Here are two annotated diagrams containing technical terms:

Uro-genital system, ...Anal/rectal anatomy

Here is a prior post outlining some of the surgical options for Very Low Rectal (VLR) tumors:
https://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=62467&p=492427#p492427

Here is a post mentioning a successful surgery for a very low rectal tumor:
https://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=62441&p=492363#p492363

GreenTea, you are right, more info in my signature would help greatly with responses. I have a ton of questions for my surgeon but my last appt she was suddenly out so I had to meet with her PA. Will definitely be reading all of the links you provided, thank you

Also, I don’t know your treatment teams philosophy, but are they, and more importantly you, open to “watch and wait?” Of course, this depends on whether you have had a complete response to treatment or not. Many of the top centers are incorporating this treatment plan based on the severity of the surgery most rectal cancer patients undergo.

Again, ask questions and demand answers. Surgeons and doctors, in general, can be an arrogant bunch.

Cmarie03:
How are things going? Have you gotten any more info? My husband is having a similar surgery in August....The plan is for him to have a permanent ostomy bag....have you been able to speak with your surgeon?
jep

typically from my understanding if you have rectal cancer they remove the entire rectum. Mine was 9 from anal verge. I rectum has been removed. Colo Anal Anastomosis is what there going to do for you. Pooping can suck once they reverse your ileostomy bag. They will give you a bag so the colo anal connection is healed. Don't be afraid the bag is no big deal once you get the hang of it. Took me about 2 weeks. Your doing the right thing, get the surgery, its probably a TME ( total mesorectal excision) removal of your rectum. Also pooping gets better after reversal like about 6- 8 months out.

Good Luck!!

LARS can be quite tough. I'm almost a year out and I've had a clustering day on the bathroom and this one has run eighteen hours so far. The alternative is a colostomy bag.

There's a lot to learn about LARS and there are places on the web that describe it in clinical terms but I think that you learn about it better by chatting with those who have it.

You can go through my long thread where I talk about it in detail, sometimes too much.

My tumor was 7 cm from the AV and I lost 90% of my rectum. I did not have radiation. I’m closing in on two years NED (learned today that I am still Ned after ct and butt probing) and my bowel function is great. It’s probably 90% of what it once was but much better than when I was diagnosed.

BUMP

Phillypatient wrote:... My experience is the LARS simply sucks and you should check out the topics discussing this and the potential outcomes/solutions on this discussion forum. There is a tremendous amount of info that most doctors will sadly never tell you...

Cmarie03- My suggestion, too, would be to start educating yourself about LARS right now if it looks like you will be having a colo-anal anastomosis,or an Ultra-Low Anterior Resection (ULAR), or a J-pouch surgery, etc. These types of surgeries, with a very low re-connection, are likely to trigger some degree of LARS, and the sooner you start educating yourself about the problem the better.

Jeanee Wright wrote:LIVING WITH LARS (Website)

RESOURCES:

• Colorectal Cancer Site: on LARS
• UK Bowel Cancer Site
• Clinical Report on LARS
• Podcast Discussing LARS
• National Association for Continence
• International Continence Society
• Bathroom Scout- Worldwide Bathroom Finder App
• Got to Go Restroom Finder App
• Charmin’s Sit or Squat Restroom Finder App
• Suicide and Depression Lifeline
• Coloplast Managing Resection Toolkit
• Living With Low Anterior Resection Syndrome
  PDF file download: lars-patient-guide-amended-feb-24-2019-2-2

MANAGEMENT TIPS:

• Strategy 1- Diet
• Strategy 2- Exercise and Exercises
• Strategy 3- Biofeedback
• Strategy 4- Sacral Nerve Stimulator
• Strategy 5- Mindfulness
• Strategy 6- Medications and Supplements
• Strategy 7- Lower Colon Irrigation
• Strategy 8- Bowel Training Program
• Strategy 9- Skin care- Prevention and Management
• Strategy 10- Practicality Tips
• Strategy 11- Returning to Work
• Strategy 12- Sex and Intimacy with LARS
• Strategy 13- Alternative Medicine
• Strategy 14- Professional Support

https://livingwithlars.com/about-us/
Jeanee Wright