Life without a colon?
My mom is a four time survivor, now five time survivor, being diagnosed with her fifth cancer last week. Her previous cancer hx - colon 2x - 1990 and 2001, lung 2003, mediastinum 2004 - stages II through IV.
This time it is recommended that the rest of her colon (descending colon) be removed entirely, but the surgeon does not recommend a colostomy. He tells her that incontinence will most likely be a problem until her body adjusts, but most likely chronic diarrhea and incontinence will be an issue for the rest of her life. He did say he can leave a small amount of colon behind at the risk of the cancer coming back and with greater risk of a fourth colon surgery being very risky. He does not recommend a j-pouch or colostomy.
My mom is a very active and fit woman, very stylish and attractive - the idea of incontinence and Depends seems incongruous with who she is and how she lives her life. For goodness sakes, she just returned home from a three week trip of snorkeling, hiking, rafting and other assorted sports. Depends? Ugh....
Anyone here have a complete colectomy without a colostomy? If so, how is it working?
Love to all...I still check in here often and I do think about everyone and send warm thoughts and prayers to everyone daily, even though I am now more of a lurker. Of course cancer would push me from behind the curtain and back online....
Comments
-
second opinion
I would have your mom get a second opinion. I had my cancer surgery in 6/03. My tumor was very low and I had preop chemo and radiation. I had a temp. ileostomy that was reversed 8 weeks later. I was told I would have 3 - 5 bowel movements a day, once I was healed. I remember thinking I don't care if I go 100 times a day, I will be so happy to be done with the ileostomy. Well, I spent the next 1 1/2 years in the bathroom or looking for one. I was going up to 30 - 40 times a day. I was going 10 times during the night. I had diarrhea, urgency and occasional incontinence. I wore a pad, but would not wear depends. I had constant butt burn and had difficulty sitting due to the pain. My bottom was so sore I had to take narcotic pain pills. It was awful. I made a tough decision and had a colostomy done. I got my life back and havent regreted my decision.
Would your mom be agreeable to a colostomy and why doesnt her doc want to do one?
I was 7 weeks post op from the colostomy and went on a cruise and went snorkeling. I still had 2 small open ares in my incision that I had had to pack twice a day.
Good luck to your mom. Let us know what she decides.
Maureen
PS I still have alot of my colon.0 -
hi katMoesimo said:second opinion
I would have your mom get a second opinion. I had my cancer surgery in 6/03. My tumor was very low and I had preop chemo and radiation. I had a temp. ileostomy that was reversed 8 weeks later. I was told I would have 3 - 5 bowel movements a day, once I was healed. I remember thinking I don't care if I go 100 times a day, I will be so happy to be done with the ileostomy. Well, I spent the next 1 1/2 years in the bathroom or looking for one. I was going up to 30 - 40 times a day. I was going 10 times during the night. I had diarrhea, urgency and occasional incontinence. I wore a pad, but would not wear depends. I had constant butt burn and had difficulty sitting due to the pain. My bottom was so sore I had to take narcotic pain pills. It was awful. I made a tough decision and had a colostomy done. I got my life back and havent regreted my decision.
Would your mom be agreeable to a colostomy and why doesnt her doc want to do one?
I was 7 weeks post op from the colostomy and went on a cruise and went snorkeling. I still had 2 small open ares in my incision that I had had to pack twice a day.
Good luck to your mom. Let us know what she decides.
Maureen
PS I still have alot of my colon.
dont know if you remember me.sorry i dont have an answer for your mom.i was recently dx stage4 with mets to liver and lung.you always had inspiring words for me back in 2009.i was even trying to look up some old posts of yours just so i could read those words again.i am glad you stopped by.are you doing ok?and how is spongebob.hope to talk to you soon.....Godbless.....johnnybegood0 -
Hi
So sorry that your Mom is at this crossroads again.
I do have to wonder why the doctor does not recommend a colostomy? I am soon to be 64 yrs old and had mine done just a year ago. Life with a colostomy is not a bad thing. Doesn't stop any activity that I know of and sure beats staying in the bathroom.
I would want a second opinion as I don't think I have ever heard of taking the entire colon without doing a colostomy.
Hope all goes well for your Mom no matter what she decides.
Marie who loves kitties0 -
Hey There Katie
Good to see you back but I don't like why you are!
Give my love to your wonderful Mom and I don't blame y'all for asking around.
I didn't see anyone responding without a colon so I am bumping this up to see if someone will have some input for you.
My love to you and Sponger and I like that your impending move gets you closer to "Mama USAKAT".
Lisa P.0 -
I did a quick search
and came up with this:
http://www.medhelp.org/posts/Gastroenterology/Colectomy-without-jpouch-or-ileostomy-bag/show/643999
There were quite a few responses, you might find something useful there.
Note that if the entire colon is being removed a colostomy is not possible, however, one would usually get an ileostomy. The difference is the small intestine is routed out through the abdominal wall instead of the large intestine (colon). Very similar surgeries, and lots of people on here with one or the other. Output is very different for an ileostomy as the colon removes most of the fluids as waste travels through.
Here is a Wiki site that seems to describe the same procedure you are mentioning:
http://en.wikipedia.org/wiki/Ileo-anal_pouch
Hope this helps,
Blake0 -
Hi kat, another old timer
Hi kat, another old timer here (diagnosed stage 3 1993). It is true that the more colon removed the more problem with very loose stools. I can't understand how anyone could go without an ostomy bag, especially if he or she were active. I agree with the previous post- if not a colostomy bag, an iliostomy is still a better option than no bag at all.
Carl0 -
Hey Katie!
I have a number of local friends without colons. Only one is because of cancer. She's 14. Her colon was removed when she was 13. FAP. Her mom died a few months ago from breast cancer. The teen plays sports and deals very well.
Pam's husband had his colon removed because of Crohn's disease many years ago. I had no idea til she told me. He no longer has issues.
Jeremy is my friend Sonya's husband. He's early 30's and had some serious IBS type colitis that ended up with a total removal of his colon in his early 20's. Jeremy does fine during the day but Sonya said he will sometimes lose control while sleeping and soil the bed. I know he has a J-pouch but I had no reason to ask about the others... so I don't know. I do know they all live very active lives and I would have had no idea if my colon cancer had not come up.
Wishing good results for your mom!
Diane0 -
Life without a colon
Hi Katie -
I don't want to speak for our friend Rodney - he passed away last summer - but Rod had his colon removed in 2005 with no colostomy and always told me it wasn't bad.
That said, I hope your Mom gets another opinion and an answer as to why a colostomy isn't an option.
Hope you and Sponge are doing well,0 -
Hi just letting you know
Hi just letting you know what I had done. I had about 12 inches of the colorectal removed but it sounds like your mom will have the descending (what I had removed) along with previous colon removal? I am still on chemo so still have diarrhea issues but was told my body will adjust. I was told Benefiber will help to bulk it up and help with the loose stool and bananas help me. I eat 1 or 2 a day sometimes. Good luck to you Mom.
Gail0 -
Hey, Katie!
All I can say is 'oh, cr*p!' Give mom my biggest hugs, please!!!
I can't speak to your question, since my remission is holding so far at 6 years...with just a simple J-pouch...
BUT I have a friend who had his entire colon removed for another reason, and he has an illeostomy...he is quite the adventurer, traveling across Korea by local transportation was his latest...and the stomy doesn't slow him. He does say that there is more acid stuff that comes out, so he needs to watch the opening...but yeah, there is DEFINATELY life without a colon for him!!!!
BIG dutch hugs, Kathi0 -
welcome backKathiM said:Hey, Katie!
All I can say is 'oh, cr*p!' Give mom my biggest hugs, please!!!
I can't speak to your question, since my remission is holding so far at 6 years...with just a simple J-pouch...
BUT I have a friend who had his entire colon removed for another reason, and he has an illeostomy...he is quite the adventurer, traveling across Korea by local transportation was his latest...and the stomy doesn't slow him. He does say that there is more acid stuff that comes out, so he needs to watch the opening...but yeah, there is DEFINATELY life without a colon for him!!!!
BIG dutch hugs, Kathi
hi katie,
its great meeting stage III survivors like you, I hope to one as well.
your poor mum,
the ileostomy is a small sacrifice to live, I would prefer it to constant and persistent incontinence. been swimming and walking and can even do scuba diving with it, only I cannot dive until chemo is finished.
so the biggest issue with ileostomy is diarrhea ( chemo related ), you goto empty the bag freqently is also the biggest hassle. other than that its a pience of cake. you will get the occasional spill. but you know the t shirt "**** HAPPENS".
you between you and your mum you've done the rounds of surgeons and oncs, so I guess you could get a second opinion to see if you have all the options explained.
hope your mum is ok and yo stay cancer free.
Pete0 -
Thank youAnneCan said:usakat
I don't have an answer for you, but I wanted to say + I am glad you have come to visit. I am sorry for your Mom's newest cancer. She sounds amazing + I hope the right answer will be found for her. Someone here has to know something about this.
And yep, mom is amazing...0 -
Nice to see you Maureen!Moesimo said:second opinion
I would have your mom get a second opinion. I had my cancer surgery in 6/03. My tumor was very low and I had preop chemo and radiation. I had a temp. ileostomy that was reversed 8 weeks later. I was told I would have 3 - 5 bowel movements a day, once I was healed. I remember thinking I don't care if I go 100 times a day, I will be so happy to be done with the ileostomy. Well, I spent the next 1 1/2 years in the bathroom or looking for one. I was going up to 30 - 40 times a day. I was going 10 times during the night. I had diarrhea, urgency and occasional incontinence. I wore a pad, but would not wear depends. I had constant butt burn and had difficulty sitting due to the pain. My bottom was so sore I had to take narcotic pain pills. It was awful. I made a tough decision and had a colostomy done. I got my life back and havent regreted my decision.
Would your mom be agreeable to a colostomy and why doesnt her doc want to do one?
I was 7 weeks post op from the colostomy and went on a cruise and went snorkeling. I still had 2 small open ares in my incision that I had had to pack twice a day.
Good luck to your mom. Let us know what she decides.
Maureen
PS I still have alot of my colon.
Thank you so much for your reply Maureen. I'm going to share your post with my mom.
Mom is going to get a second opinion - I suggested she get as many as she needs to make the right choice (if there is such a thing concerning cancer). Whatever she decides I know she will make the best of it and live her life - that is just the way she rolls.
I know if it were me, I would opt for the ileostomy rather than a life on the hunt for the nearest toilet, but mom needs to decide for herself.
I'm going out to California to see mom in a couple of weeks, so hopefully I'll get to meet her docs and ask the 20,000 questions that she doesn't.
Thanks again, Maureen, for your reply. How are you these days?
Katie0 -
Me too!Lovekitties said:Hi
So sorry that your Mom is at this crossroads again.
I do have to wonder why the doctor does not recommend a colostomy? I am soon to be 64 yrs old and had mine done just a year ago. Life with a colostomy is not a bad thing. Doesn't stop any activity that I know of and sure beats staying in the bathroom.
I would want a second opinion as I don't think I have ever heard of taking the entire colon without doing a colostomy.
Hope all goes well for your Mom no matter what she decides.
Marie who loves kitties
I love kitties and I've never heard of taking the entire colon without doing either a j-pouch or an ileostomy, even if a temporary ileostomy. A second opinion is in the works - waiting for a referral and insurance okay, but there is time before the scheduled surgery.
Thanks for your note, Marie. And cute kitties by the way....0 -
HI Scouty!scouty said:Hey There Katie
Good to see you back but I don't like why you are!
Give my love to your wonderful Mom and I don't blame y'all for asking around.
I didn't see anyone responding without a colon so I am bumping this up to see if someone will have some input for you.
My love to you and Sponger and I like that your impending move gets you closer to "Mama USAKAT".
Lisa P.
I know right? The reason I've come from behind the lurker curtain. You know, it is so much harder to watch mom go through this than it was when I did myself. That is love I guess. You know how close we are, and you met my mom so you know what an awesome lady she is...it's painful to watch her go through this yet again. Five times...cancer five times! Really? I'm certain though, that mom will survive this one too, with grace and tenacity just like the other four times and by this time next year she'll be off on another vacation.
And yeah....I'm looking forward to getting back to the Pacific! And what better place than the land where palm trees sway? I told Bob I would like a ukulele for our anniversary. Can you believe it's almost four years for us? Time flies....
Love and hugs to you, Lisa....Katie
P.S. Since we're short timers in KW you might come on down for one last hurrah. Door is always open...xoxo0 -
Thanks BlakeBuckwirth said:I did a quick search
and came up with this:
http://www.medhelp.org/posts/Gastroenterology/Colectomy-without-jpouch-or-ileostomy-bag/show/643999
There were quite a few responses, you might find something useful there.
Note that if the entire colon is being removed a colostomy is not possible, however, one would usually get an ileostomy. The difference is the small intestine is routed out through the abdominal wall instead of the large intestine (colon). Very similar surgeries, and lots of people on here with one or the other. Output is very different for an ileostomy as the colon removes most of the fluids as waste travels through.
Here is a Wiki site that seems to describe the same procedure you are mentioning:
http://en.wikipedia.org/wiki/Ileo-anal_pouch
Hope this helps,
Blake
Thanks for the info, Blake. I will forward your links to my mom to review. Ultimately she needs to make her own choice, but she is seeking another opinion to explore all the options. In spite of all this coming up again, she is head up, face forward and moving ahead. Almost fearless....always faithful...a truly amazing woman.0 -
Of course I remember you!johnnybegood said:hi kat
dont know if you remember me.sorry i dont have an answer for your mom.i was recently dx stage4 with mets to liver and lung.you always had inspiring words for me back in 2009.i was even trying to look up some old posts of yours just so i could read those words again.i am glad you stopped by.are you doing ok?and how is spongebob.hope to talk to you soon.....Godbless.....johnnybegood
I'm so sorry to read you now have lung/liver mets
I'll keep you in my warm thoughts and prayers.
I am glad however, that I was able to help you out once or twice with a few kind words.
Steady on J-B-Good....keep up the fight and the faith!0
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