I have had a K-pouch since November 06, and have just recently restarted chemo, 5FU and Oxaliplatin and the side effects have just totally worn me out, exhausted, constant leakage, intense gas pains. Has anyone else experienced this and what did you do. I can handle everything except the leakage. At the time of my surgery there was no longer any cancer in my colon (though I had FAP) but there were still some masses in my rectum. Twelve lymph nodes were removed and all were negative. Some Dr's said that I didnt need to redo the chemo, but I thought it over and said I was fine the first time around I might as well try it again, but am starting to have second thoughts.
Thanks.
Wish I knew this site was around when I was home recovering from surgery.
K-Pouch and chemo
ooooh! lookie lookie, i've been summoned once again from the murky depths of the colonclub lurkers....
Johnny. Let me tell ya, i know what you're going through. I was gonna just tell you to check my past postings, but i'll give you a (hopefully) brief summary of the inigma that is me.
was diagnosed in february '06 at the age of 25 as having FAP that advanced to stage III rectal cancer. immediately began chemo, and a couple months later did five weeks of radiation combined with xeloda.
a brief break, and then at the end of september finally had surgery removing entire colon and rectum, and having a kpouch formed.
so sept. 26th was my surgery (with the illustrious Dr. Fazio). i started chemo towards the end of November, 5FU, Oxali..you know, the norm.
did six rounds (just finished a couple weeks ago)
and just like you, the first time i did the chemo before this surgery, i didn't suffer a lot of side effects.
but THIS time around, with my new plumbing....loooorrrrdy.
i had the enormous gas pains (and alot, like i'd get to go maybe an hour or so between intubations before i'd start cramping up. at it's most severe i'd intubate, and maybe 15 min. later i'd be cramping up again. sooo frustrating)
and then i had several times (usually a day or two after i'd get disconnected from chemo) i just wouldn't be able to get the catheter in whatsoever. i'd sit there for 40 min. hoping it'd finally go in, with no luck.
(the constant drainage catheter they have you hooked up to the first three week after the surgery, that catheter seems to work better when i can't get the normal marlen catheter to work)
i'd get crazy bloating, super thin stool (like, pretty much colored water), which i assume was our kpoucher way of having diarrhea.
and in all my frustration, the surgeon couldn't really tell me anything. basically he told me "well, i don't have anyone in your particular situation, being young, having had chemo, now having a kpouch, and getting chemo again. the best i can do is give you comparisons to older women who have regular ileostomies and have chemo"
so i just had to trudge through it, sorta blazing the way for kpouches and chemo i guess (in terms of reporting my issues and side effects to the surgeon)
I can't really tell you how to cope, i don't have any secrets really, other than if it just gets unbearable, you can always resort to putting the constant drainage and leg bag in. which would give the valve and entry way a chance to 'rest' if you will. It will let the inflammation the chemo can cause, a chance to die down without being irritated further by frequent intubations.
you can also try products like gas-x and beano. or just straight up simethicone (sp?) to try and relieve the gas pressure. i haven't been consistent enough trying it to tell you if it makes a real difference.
but it can't hurt to try.
feel free to PM me, or email me at cynnycal@yahoo.com if you have more questions i may be able to help with.
and by all means, GOOD LUCK! it's not the easiest road, but it will soon be over, and then you can be on your way to healing up and getting a normally functioning pouch.
(as for me, i've been off the chemo for almost two weeks, and notice a significant change in the neuropathy, but i'm still dealing with the side effects to the pouch. i hope things calm down soon, and i too can be on my way to that normally functioning pouch)
Becca
Johnny. Let me tell ya, i know what you're going through. I was gonna just tell you to check my past postings, but i'll give you a (hopefully) brief summary of the inigma that is me.
was diagnosed in february '06 at the age of 25 as having FAP that advanced to stage III rectal cancer. immediately began chemo, and a couple months later did five weeks of radiation combined with xeloda.
a brief break, and then at the end of september finally had surgery removing entire colon and rectum, and having a kpouch formed.
so sept. 26th was my surgery (with the illustrious Dr. Fazio). i started chemo towards the end of November, 5FU, Oxali..you know, the norm.
did six rounds (just finished a couple weeks ago)
and just like you, the first time i did the chemo before this surgery, i didn't suffer a lot of side effects.
but THIS time around, with my new plumbing....loooorrrrdy.
i had the enormous gas pains (and alot, like i'd get to go maybe an hour or so between intubations before i'd start cramping up. at it's most severe i'd intubate, and maybe 15 min. later i'd be cramping up again. sooo frustrating)
and then i had several times (usually a day or two after i'd get disconnected from chemo) i just wouldn't be able to get the catheter in whatsoever. i'd sit there for 40 min. hoping it'd finally go in, with no luck.
(the constant drainage catheter they have you hooked up to the first three week after the surgery, that catheter seems to work better when i can't get the normal marlen catheter to work)
i'd get crazy bloating, super thin stool (like, pretty much colored water), which i assume was our kpoucher way of having diarrhea.
and in all my frustration, the surgeon couldn't really tell me anything. basically he told me "well, i don't have anyone in your particular situation, being young, having had chemo, now having a kpouch, and getting chemo again. the best i can do is give you comparisons to older women who have regular ileostomies and have chemo"
so i just had to trudge through it, sorta blazing the way for kpouches and chemo i guess (in terms of reporting my issues and side effects to the surgeon)
I can't really tell you how to cope, i don't have any secrets really, other than if it just gets unbearable, you can always resort to putting the constant drainage and leg bag in. which would give the valve and entry way a chance to 'rest' if you will. It will let the inflammation the chemo can cause, a chance to die down without being irritated further by frequent intubations.
you can also try products like gas-x and beano. or just straight up simethicone (sp?) to try and relieve the gas pressure. i haven't been consistent enough trying it to tell you if it makes a real difference.
but it can't hurt to try.
feel free to PM me, or email me at cynnycal@yahoo.com if you have more questions i may be able to help with.
and by all means, GOOD LUCK! it's not the easiest road, but it will soon be over, and then you can be on your way to healing up and getting a normally functioning pouch.
(as for me, i've been off the chemo for almost two weeks, and notice a significant change in the neuropathy, but i'm still dealing with the side effects to the pouch. i hope things calm down soon, and i too can be on my way to that normally functioning pouch)
Becca
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