LAR Surgery and Syndrome

[scohow66]

Hi all - I am a 51 year old male dx with rectal cancer last October (2016). I have a T2N0M0 clinically staged tumer 6 cm from the anal verge. Completed chemo/rad end of January (28 treatments with 24x7 5FU chemo). Tumor is gone with only scar tissue remaining. I have an LAR scheduled 4/25 and have been assessing many options around this and have concerns about LARS. I can opt for (1) a more straight forward excision procedure without nodes, (2) LAR with temp bag or (3) APR with perm bag. There is not great data beyond 5 years on the excision option as there could be node involvement even though not present on scans so would have to live with risk. The LAR presents lots of concerns regarding the syndrome after reconnection. Surgeon feels confident he can work with what's left to reconnect. Last option is to go with APR and just get the bag and be done withouth risk of LAR syndrome and poor bowel function for years to life. I have read a ton of info on all of these options along with many chat rooms and find that most don't have a good post op experience with LAR, in fact I have seen zero positive comments about the surgery and its post op impacts. Interested in thoughts from the community here as this is a very difficult decision with no great outcomes regardless of which path taken. I don't want to be tied to the bathroom and wearing diapers the rest of my life and certainly not starting at 51. Your feedback is appreciated! Thanks.

[miles66]

I am 1 month away from the takedown, and am doing some serious contemplated regarding having it, or keeping my ileostomy. It certainly helps hearing other people's stories. I've talked to several people that had nothing but problems with their ileostomy, and can't believe that I'd want to keep mine. However, I've had no issues with it at all. It seems most people are coping with life after the takedown, but with some diet and medicine changes. No one I've talked is "normal" again, but they cope and still live their lives. Some are definitely worse than others, so it's really hard to say how any individual will be afterward. I'm glad I opted for the temp ileo, because it gave me a chance to take it for a test drive. Some people just don't adapt to the pouch. If I had the problems that I've heard of (severe leaking, changing every few days, can't sleep on their side, can't even sleep in a bed because it leaks, smell, output, etc.) I wouldn't want it either. But I could easily live like this with no problems. Of course, I'm 50 and that may change when I'm 70 or 80. That's something to think about as well.
Wish you the best!

[MissMolly]

I encourage you to visit the United Ostomy Association support forum (UOAA) and talk with individuals who opted for the SPR with permanent colostomy.

There is one person in particular who would be a valuable person for you to connect with on the UOAA forum - his online name is OTdave. OTdave was 37 at the time of his rectal cancer surgery, some 7 yeears ago. He is an occupational therapist by profession and an active outdoorsman, married with two young children. He elected to undergo the APR with permanent colostomy. He has remained NED since completing his treatments. He is at complete ease with his decisions at complete ease with his ostomy.

OTdave is able to irrigate his colostomy, allowing him to be virtually pouch free. Irrigation is an option for most colostomates. It is similar to a daily enema, flushing the lower colon of feces and waste. It allows individuals with a colostomy to be without a pouch if system for wide swaths of the day.

http://www.uoaa.org

Feel free too visit and interact with others on the ostomy forum. You will find that there is a good quality of life to be found with a ostomy.

FYI: a colostomy is much easier to care for than a temporary lop ileostomy. The two are not easily comparable in terms of ostomy care and daily maintenance. Temporary ileostomies are high maintenance. Permanent colostomies are low maintenance. Comparatively.

Sincere best wishes as you move forward,
- Karen -

[ams5796]

Everyone feels differently about having a bag. I honestly think if I were in your shoes and knowing all that I know now I would opt for the permanent bag. I had a temporary ileo for nine months. I couldn't wait for my reversal surgery. It has been an uphill battle ever since. I have done everything to facilitate easy "normal" bowel movements and have been very unsuccessful. Most days I do an enema. It hasn't been easy. To go back to a bag now would involve a big surgery etc, but I do consider it often.


Ann

[Badass]

I had an LAR and had the syndrome for a few years. Was manageable but didn't want to have to think about what I ate or drank and worry about gas and running to the toilet unexpectedly. Just too much thinking about poop! I tried the tap water enema and it changed my life. I do it every day or two and it takes half an hour, and in-between no issues at all- none! And I eat anything i feel like.

Jane

[PGLGreg]

I have a T2N0M0 clinically staged tumer 6 cm from the anal verge. Completed chemo/rad end of January (28 treatments with 24x7 5FU chemo).

I'll add a data point. I had a T3N0M0 tumor 5cm from the anal verge. I am NED after LAR 11 years ago, no bag, then 28 radiation treatment and 10 injections of 5fu with leucovorin. No after effects other than gas. (It's usual now to give radiation before surgery, but I had it after.)

[tammylayne]

I understand your thought process...I thought long and hard before going for the reversal, and if you have searched daily enema, as I am sure you have, you will see my name come up frequently. Some call me the Enema Queen . There are actually a few of us here that live the enema lifestyle. I like it because it takes the unknown out of the bathroom situation. I know every morning from 7 - 730 is bathroom time,,,really easy to schedule my life around that. I can't speak to the perm colostomy as I never had one - I would think it would become pretty predictable but I don't know. It was a living hell for me have the ileo...accidents, burning skin, bags not sticking...so not a fair comparison to you as things seem to be pretty ok. I was worried the colostomy experience would be similar however I was ready to schedule it as going to the washroom 25 - 30 times a day was horrible. It was at that appointment that my surgeon endorsed trying the daily enema first and because of my success....went on to recommend it to his other patients that were struggling after reversal.

I was one of the people that did not have a positive outcome from the reversal, however, I have found a solution that works very well for me. 30 minutes once a day. I have been doing it for 4 years, and I feel it is easier and I spend LESS time in the washroom then before cancer when I was "normal". Some people change their eating habits, some take things like immodium. My point is that there are things you can try. If nothing gives you what you can live with, at that point you can opt for a perm colostomy...at least that is the thought process that worked for me. I thought long and hard,,,and came to the conclusion I had to try the reversal so I would not second guess myself for the rest of my life, but I was also willing to have an additional surgery if it didn't work...not everyone is will to do that. For some...one and done is the way to go - have the perm colostomy and don't look back. A very personal decision.

I hope that enough people share their experiences so you can reflect and process and come up with a plan that works for you!!! At the end of the day, it doesn't matter how you go...it only matters that you have a good quality of life!!!!

Best of luck to you and anyone else struggling with this decision...

[scohow66]

Thanks you for the feedback and input. I struggle with giving reconnection a shot so that I don't have regrets, but worry about that path and LARS. The enema process sounds encouraging and seems to yield some good results. I hate to go full colostomy and not give reconnect a chance even though it would be "one and done", but then living with the bag.

Interested in any others who have comments too.

Thanks!

[kellywin]

I'll chime in that it was rough at times for awhile, and you make yourself aware of bathroom locations everywhere you go, but for me it got better with time and Metamucil. I never had the temp ileo - so I can't speak to that. Now things are pretty good - there are frustrating times, but it doesn't stop me from doing whatever I want. I'd say the biggest problems/side effects I have now are from: #1 the radiation and #2 the chemo.