Need help after sphincter-sparing surgery

katelee

My brother age 51 had sphincter-sparing surgery 2 months ago for resection of a Stage 2 rectal cancer, his nodes are negative, all margins clear thankfully. The board certified colo-rectal surgeons were unable to do a J-pouch because of his narrow pelvis, they did a colo-anal anastomosis. He developed a rectal/pelvic abcess that has finally seemed to heal after incision & drainage, antibiotics etc. He is now having almost constant small formed stools. His surgeon does not want him to start a bowel training program that includes Metamucil or Benefiber at present, just use Lomotil and a low fiber diet.

The very frequent bowel movements are restricting his life,not to mention that sometimes he can not make it to a bathroom. It is becoming very difficult for him to deal with, and also very socially isolating, his line of work involves meeting and talking with people, so he has not been able to work. Does anyone have experience with this kind of sphincter-sparing surgery and the side-effects? I am trying very hard to find someone that may have gone through this and how they manaaged their recovery, so that I can give my brother some hope that things will get better.

Thanks for reading this and any help is greatly appreciated.

KathiM

Pick me! Pick me! Stage III rectal cancer, node negative after all was said and done...
I had a resection that removed my rectum and sigmoid colon, it DID involve making a new 'pouch' out of some of the colon, tho.
This was a year ago May. At the beginning, I was in the same situation as your brother...frequent, small, formed stools alternating with a few 'explosions' of loose stools that made me look in the bowl for my tonsils (hehehehehe).
Yes, it DOES change your life for awhile...but things DO improve...starting at about 2-3 months. THAT is why his onc doesn't want to do anything yet....I took one dose of lomotil...and plugged up soooo bad that we decided to just let nature 'run it's course'. I ate known stool firmers like bananas, and drank 100% fruit juice if it got too hard...
2 months is NOT alot of recovery time...but tell him to be good to his system....no high spices (salsa, for instance) or gassy stuff...small meals, and just be prepared to hit the bathroom (I even needed to excuse myself during the meal at the beginning).
I also checked out my day before I left, and if I HAD to be in a meeting, well, I just waited to eat till AFTER the meeting. He needs to realize that his body has undergone a MAJOR change, and is just healing....he needs to give it time, get PLENTY of rest (I know, I'm self-employed, so I had to work, too)and I drank at least 2 quarts of just plain WATER a day.

Please e-mail me if you want to chat more.
Hugs to him and his caring sister!
Kathi
p.s. I will be 51 years young this month...

KathiM

KathiM said:

Pick me! Pick me! Stage III rectal cancer, node negative after all was said and done...
I had a resection that removed my rectum and sigmoid colon, it DID involve making a new 'pouch' out of some of the colon, tho.
This was a year ago May. At the beginning, I was in the same situation as your brother...frequent, small, formed stools alternating with a few 'explosions' of loose stools that made me look in the bowl for my tonsils (hehehehehe).
Yes, it DOES change your life for awhile...but things DO improve...starting at about 2-3 months. THAT is why his onc doesn't want to do anything yet....I took one dose of lomotil...and plugged up soooo bad that we decided to just let nature 'run it's course'. I ate known stool firmers like bananas, and drank 100% fruit juice if it got too hard...
2 months is NOT alot of recovery time...but tell him to be good to his system....no high spices (salsa, for instance) or gassy stuff...small meals, and just be prepared to hit the bathroom (I even needed to excuse myself during the meal at the beginning).
I also checked out my day before I left, and if I HAD to be in a meeting, well, I just waited to eat till AFTER the meeting. He needs to realize that his body has undergone a MAJOR change, and is just healing....he needs to give it time, get PLENTY of rest (I know, I'm self-employed, so I had to work, too)and I drank at least 2 quarts of just plain WATER a day.

Please e-mail me if you want to chat more.
Hugs to him and his caring sister!
Kathi
p.s. I will be 51 years young this month...

Oh, and I now have (hold your envy) 2 bowel movements a day, completely formed.
Only time it's different is if I 'splurge' on naughty stuff...OR eat spinach...Then....well...even people that still HAVE all their plumbing have their moments!
Hugs, Kathi

lfondots63

Hi Katelee,

I don't have the same dx but have to work around being close to a bathroom. I'm still going through chemo so have to watch when I feel like I have to go to the bathroom. Maybe have him watch what he is eating. Like Kathi said try the BRAT diet too. Bananas, Rice, Apples, Toast. Might help and it is natural. I'm working through my treatments. It is hard to live your life around knowing where the next bathroom is. I have also "not made it in time" a few times. Very upseting but I know it will get better with time. Especially for me once chemo is done. Tell him it takes time for the bowels to heal. Good luck and Take care.

Lisa

katelee

KathiM said:

Pick me! Pick me! Stage III rectal cancer, node negative after all was said and done...
I had a resection that removed my rectum and sigmoid colon, it DID involve making a new 'pouch' out of some of the colon, tho.
This was a year ago May. At the beginning, I was in the same situation as your brother...frequent, small, formed stools alternating with a few 'explosions' of loose stools that made me look in the bowl for my tonsils (hehehehehe).
Yes, it DOES change your life for awhile...but things DO improve...starting at about 2-3 months. THAT is why his onc doesn't want to do anything yet....I took one dose of lomotil...and plugged up soooo bad that we decided to just let nature 'run it's course'. I ate known stool firmers like bananas, and drank 100% fruit juice if it got too hard...
2 months is NOT alot of recovery time...but tell him to be good to his system....no high spices (salsa, for instance) or gassy stuff...small meals, and just be prepared to hit the bathroom (I even needed to excuse myself during the meal at the beginning).
I also checked out my day before I left, and if I HAD to be in a meeting, well, I just waited to eat till AFTER the meeting. He needs to realize that his body has undergone a MAJOR change, and is just healing....he needs to give it time, get PLENTY of rest (I know, I'm self-employed, so I had to work, too)and I drank at least 2 quarts of just plain WATER a day.

Please e-mail me if you want to chat more.
Hugs to him and his caring sister!
Kathi
p.s. I will be 51 years young this month...

Kathi,
Thanks so much for your reply, did you ever start to use Metamucil or Benefibre during the bowel training period of your recovery? I've pulled info off the MD Anderson Cancer web site pertaining to bowel management, and other sites that talk about this, it does seem to be individualized.

My brother is having periods where he is good for energy for about 2 weeks, then he seems to crash for 2-3 days, with extreme exhaustion. Did you experience that? Also, how did you keep your spirits up? My brother has alot of family support, but sometimes I think he gets worn out with all of us. He has always been extremely independent and self sufficient.

Thanks so much for writing back, I'm going to print this out and send it to my brother. I'm not sure how to email you directly.

Katelee

katelee

lfondots63 said:

Hi Katelee,

I don't have the same dx but have to work around being close to a bathroom. I'm still going through chemo so have to watch when I feel like I have to go to the bathroom. Maybe have him watch what he is eating. Like Kathi said try the BRAT diet too. Bananas, Rice, Apples, Toast. Might help and it is natural. I'm working through my treatments. It is hard to live your life around knowing where the next bathroom is. I have also "not made it in time" a few times. Very upseting but I know it will get better with time. Especially for me once chemo is done. Tell him it takes time for the bowels to heal. Good luck and Take care.

Lisa

Lisa,
Thanks for your encouraging reply, I'm going to send these thoughts to my brother. It helps so much knowing that other people have gotten better with time.

Good luck with your chemo and thanks for writing.

Katelee

KathiM

katelee said:

Kathi,
Thanks so much for your reply, did you ever start to use Metamucil or Benefibre during the bowel training period of your recovery? I've pulled info off the MD Anderson Cancer web site pertaining to bowel management, and other sites that talk about this, it does seem to be individualized.

My brother is having periods where he is good for energy for about 2 weeks, then he seems to crash for 2-3 days, with extreme exhaustion. Did you experience that? Also, how did you keep your spirits up? My brother has alot of family support, but sometimes I think he gets worn out with all of us. He has always been extremely independent and self sufficient.

Thanks so much for writing back, I'm going to print this out and send it to my brother. I'm not sure how to email you directly.

Katelee

I never did the fiber thing...guess I should...well, now it's sort of a non-problem...but you are right on about each person is different. My weakest 'point' all my life was my digestive tract...very touchy. So I kept with regulating by the types of foods I ate...like Lisa said...BRAT.
As far as e-mail...many different ways...fastest is..see the 'flying' envelope at the bottom of my reply here? If you click it, it will open a window with my name already in the "to", then I can respond back...
Yup, I got tired. This, too, will get better...again, the best recovery is the one where you rest when you are tired...even if it is in the middle of your day...go to the car..whatever.
As far as my spirits...I realized that all of this is temporary...and I needed to be patient...I am an upbeat person anyway, so I just formed a 'team' with my body...I found something to laugh about each day...even a slappy movie, if I got too blue...
Hugs, Kathi