I have colorectal cancer and problems with my ileostomy and watery stools...helpppppppp

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I have colorectal cancer and problems with my ileostomy and watery stools...helpppppppp

by retirednurse111 on Mon Apr 23, 2012 11:13 PM

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I am stage 3 colorectal cancer, 4 weeks post op.  We have tried Hollister bags and Coloplast, and I am also having watery stools..............leaking daily.  My skin is bad and I need help with product recommendations and diet recommendations.

 

Bless you all.....hope to hear from you

RE: I have colorectal cancer and problems with my ileostomy and watery stools...helpppppppp

by Super01Mom on Tue Apr 24, 2012 06:06 AM

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I can totally relate to your issues you are having with your ileostomy and the watery stools. I too had these issues, I was diagnosed June 2008 with colon cancer, had a lower anterior resection, and ten days post-op had complications that brought me back to the OR to have a colostomy. I used Hollister bags for over two years, only brand that would actually work for me because of my watery stools, it wasn't the bag that was the problem but the seal to the bag. I spoke with the colostomy representative with Hollister, and they sent me different seals to try to see which one would work for me, mine would also leak, part of my problem was due to the location so near my belly button. You could also ask for a consult with an ostomy nurse, they are wonderful and can help you tremedously thru this stressful time. I hope this helps. Good luck and you are in my thoughts and prayers.

Sheryl

RE: I have colorectal cancer and problems with my ileostomy and watery stools...helpppppppp

by navee on Tue Apr 24, 2012 08:27 AM

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My Father has stage 4 colorectal cancer and had an ileostomy 18 months ago.  He still has periods when the stoma is very watery.  As soon as this happens he takes an Immodium and it usually settles however twice he has had to go into hospital for a few days to go on a drip and avoid dehydration.  Do watch out for this.  The doctors have not been able to pin point the reason for the severe diaharrea or why it eventually settles though he has tried the following: codeine (still takes this once a day), fybogel (to bulk up the stool), very low fibre diet....

Wishing you all the best   

RE: I have colorectal cancer and problems with my ileostomy and watery stools...helpppppppp

by retirednurse111 on Tue Apr 24, 2012 03:14 PM

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On Apr 24, 2012 8:27 AM navee wrote:

My Father has stage 4 colorectal cancer and had an ileostomy 18 months ago.  He still has periods when the stoma is very watery.  As soon as this happens he takes an Immodium and it usually settles however twice he has had to go into hospital for a few days to go on a drip and avoid dehydration.  Do watch out for this.  The doctors have not been able to pin point the reason for the severe diaharrea or why it eventually settles though he has tried the following: codeine (still takes this once a day), fybogel (to bulk up the stool), very low fibre diet....

Wishing you all the best   

Can you please tell me what fybogel is and where to get it?  I hate meds that are liquid.............Thanks, Fran

RE: I have colorectal cancer and problems with my ileostomy and watery stools...helpppppppp

by retirednurse111 on Tue Apr 24, 2012 03:19 PM

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On Apr 24, 2012 6:06 AM Super01Mom wrote:

I can totally relate to your issues you are having with your ileostomy and the watery stools. I too had these issues, I was diagnosed June 2008 with colon cancer, had a lower anterior resection, and ten days post-op had complications that brought me back to the OR to have a colostomy. I used Hollister bags for over two years, only brand that would actually work for me because of my watery stools, it wasn't the bag that was the problem but the seal to the bag. I spoke with the colostomy representative with Hollister, and they sent me different seals to try to see which one would work for me, mine would also leak, part of my problem was due to the location so near my belly button. You could also ask for a consult with an ostomy nurse, they are wonderful and can help you tremedously thru this stressful time. I hope this helps. Good luck and you are in my thoughts and prayers.

Sheryl

Dear Sheryl,

Thanks for replying.  Did you have a colostomy or ileostomy?  Hollister bags WONT work for me, am now using Coloplast and awaiting Convatec and Cymed samples.

This damed belly button is a real issue.  I have already for weeks a nurse who is an Enterostomal therapist (trained at MD Anderson) and even she cant figure all this out.

I am at my wits end!  Good luck and love to you.....Fran

ps if you are on facebook, find me there....Fran Callahan Kaminski

RE: I have colorectal cancer and problems with my ileostomy and watery stools...helpppppppp

by retirednurse111 on Tue Apr 24, 2012 03:21 PM

Quote | Reply

On Apr 24, 2012 6:06 AM Super01Mom wrote:

I can totally relate to your issues you are having with your ileostomy and the watery stools. I too had these issues, I was diagnosed June 2008 with colon cancer, had a lower anterior resection, and ten days post-op had complications that brought me back to the OR to have a colostomy. I used Hollister bags for over two years, only brand that would actually work for me because of my watery stools, it wasn't the bag that was the problem but the seal to the bag. I spoke with the colostomy representative with Hollister, and they sent me different seals to try to see which one would work for me, mine would also leak, part of my problem was due to the location so near my belly button. You could also ask for a consult with an ostomy nurse, they are wonderful and can help you tremedously thru this stressful time. I hope this helps. Good luck and you are in my thoughts and prayers.

Sheryl

Sheryl,   What seal worked for you?  Also, did you use paste, powder and spray?

 

Love, Fran

RE: I have colorectal cancer and problems with my ileostomy and watery stools...helpppppppp

by navee on Tue Apr 24, 2012 05:31 PM

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It is a powder in a sachet that you mix with water, I dont think it tastes too bad.  All the best.

 

RE: I have colorectal cancer and problems with my ileostomy and watery stools...helpppppppp

by retirednurse111 on Tue Apr 24, 2012 06:46 PM

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On Apr 24, 2012 5:31 PM navee wrote:

It is a powder in a sachet that you mix with water, I dont think it tastes too bad.  All the best.

 

I was referring to the product you drink....the name again please?

 

Thanks, Fran

RE: I have colorectal cancer and problems with my ileostomy and watery stools...helpppppppp

by Super01Mom on Tue Apr 24, 2012 09:16 PM

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Fran,

I had to use the paste by Hollister to help the seal stay in place, however this did not work on every occasion. I had severe diarrhea, it would make the seal very hard to stay in place because of the leaking, and my colostomy was on the left of my belly button, not even an inch away from belly button, making it nearly impossible to keep the darn thing sealed. My specialist I have now said it should of never been that close, because of seal problems, he said even without the diarrhea issues, it would difficult to keep it sealed, my ostomy nurse too was at her wits end. One thing that also helped was after cleaning the stoma, I would use the powder let it air dry for a couple of minutes, then cut the seal to the right size, this is also important, do not cut too big or too small or you would have a difficult time keeping the seal. I used all kinds of products but Hollister was the best fit for me, everyone is different, you will just have to play with it until you find the right fit. I know it is frustrating I didn't want to leave the house because I was afraid of a leak, I would have to pack a  bag of supplies, and extra clothing just in case, but it is better to go out even if something happens than to be trapped at home 24/7, that is not good for the soul, and this game is not all medical, our mental attitude has a lot to do with it. Keep your chin up and if you need someone to talk to feel free to send me a private message as well. Good luck and God Bless.

Sheryl

RE: I have colorectal cancer and problems with my ileostomy and watery stools...helpppppppp

by Super01Mom on Tue Apr 24, 2012 09:18 PM

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Fran,

I will look you up on facebook, I am on there too. Good luck!

Sheryl

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