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

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

by ajp1228 on Mon May 07, 2012 04:39 AM

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My mother had surgery on 2/22 and is having the same problems with her bags.  Her stoma is very flat and is located straight out from her belly button.  We've tried several different things; some worked sometimes but not others.  We are having somewhat better luck this past week with Coloplast convex one-piece bags and the Coloplast Moldable Rings as the paste.  I think the rings are about the same material as the strip paste you can also buy, but I seem to be having better luck with the rings.  I don't leave them as rings; I roll it out between my hands into a long roll and then reshape it into a ring and put it around the hole in the bag.  I try to get the paste fairly even around the bag but maybe a little thicker in the places where it usually leaks.  Then we have one of the store-bought rice sock things which I microwave for 2 minutes and then put on her bag for about 15 minutes.  Someone told us that the key to getting it to stick is to get it warm.  We are still inconsistent with wearing time; we sometimes have to change it after a few hours and then finally one will stick for a few days.

I've tried Marathon Liquid Skin Protectant on the red skin around her stoma, and that has seemed to help some, although we've not used it long enough to be sure how well it will work. 

Be sure to change the bag as soon as you notice a leak or if you start to itch or burn around the stoma.  Any itchng or burnng means stool is leaking under it. 

Her doctors finally put her on Immodium to slow down the liquid stool, and it seems to help a little.  The info we have says cooked apples, applesauce, cheese, potatoes, and bread are some of the things that help thicken the stool.  We noticed recently after she ate a chicken tender salad that the stool was liquid that night, probably from all the lettuce.

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

by retirednurse111 on Mon May 07, 2012 02:41 PM

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On May 07, 2012 4:39 AM ajp1228 wrote:

My mother had surgery on 2/22 and is having the same problems with her bags.  Her stoma is very flat and is located straight out from her belly button.  We've tried several different things; some worked sometimes but not others.  We are having somewhat better luck this past week with Coloplast convex one-piece bags and the Coloplast Moldable Rings as the paste.  I think the rings are about the same material as the strip paste you can also buy, but I seem to be having better luck with the rings.  I don't leave them as rings; I roll it out between my hands into a long roll and then reshape it into a ring and put it around the hole in the bag.  I try to get the paste fairly even around the bag but maybe a little thicker in the places where it usually leaks.  Then we have one of the store-bought rice sock things which I microwave for 2 minutes and then put on her bag for about 15 minutes.  Someone told us that the key to getting it to stick is to get it warm.  We are still inconsistent with wearing time; we sometimes have to change it after a few hours and then finally one will stick for a few days.

I've tried Marathon Liquid Skin Protectant on the red skin around her stoma, and that has seemed to help some, although we've not used it long enough to be sure how well it will work. 

Be sure to change the bag as soon as you notice a leak or if you start to itch or burn around the stoma.  Any itchng or burnng means stool is leaking under it. 

Her doctors finally put her on Immodium to slow down the liquid stool, and it seems to help a little.  The info we have says cooked apples, applesauce, cheese, potatoes, and bread are some of the things that help thicken the stool.  We noticed recently after she ate a chicken tender salad that the stool was liquid that night, probably from all the lettuce.

Thanks for responding!  I too have found that the coloplast convex one piece works the best....I also use the belt.

The paste works the best for me....dont be afraid to use too much.....it just retracts away.

I am now making it about 3 days at a time,  sometimes an occasional leak.  I eat almost everything I want, but havent tried corn yet and its killing me.

I take Lomotil and generic fiber Metacmucil caps (12 a day) and a prescription for Colostipol, and now the diarrhea is only in the early to late evenings.

Best of luck to your Mother.....these are trying times, but have her pray to St. Peregrine, Jesus and Mary...they will pull her thru it!!

Love Fran

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

by ajp1228 on Mon May 07, 2012 10:53 PM

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Thanks, Fran.  Best of luck to you, too!  We use a belt, too - not sure if it's helping or not but hoping it does.  We used the tube paste for awhile - it seemed to work ok IF I got it thick enough in the right places.  However, the original technique we were taught was to put the paste on her after we cleaned her up.  That didn't always work; many times she would be active and mess up the paste and I would have to start over.  Then the last time she was in the hospital the ostomy nurse switched us to the strip paste.  It still wasn't holding very well, so I tried the samples of the moldable rings.  They may be the same as the strip paste and just more of it; I'm not sure.  I was also considering using two pieces of the strip paste, but the rings seemed to help so I just ordered a box of them.  It's hard to understand, though, how sometimes a bag can hold for only a few hours and then another one which I think I did the exact same thing will hold for a few days. 

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

by retirednurse111 on Tue May 08, 2012 02:44 PM

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On May 07, 2012 10:53 PM ajp1228 wrote:

Thanks, Fran.  Best of luck to you, too!  We use a belt, too - not sure if it's helping or not but hoping it does.  We used the tube paste for awhile - it seemed to work ok IF I got it thick enough in the right places.  However, the original technique we were taught was to put the paste on her after we cleaned her up.  That didn't always work; many times she would be active and mess up the paste and I would have to start over.  Then the last time she was in the hospital the ostomy nurse switched us to the strip paste.  It still wasn't holding very well, so I tried the samples of the moldable rings.  They may be the same as the strip paste and just more of it; I'm not sure.  I was also considering using two pieces of the strip paste, but the rings seemed to help so I just ordered a box of them.  It's hard to understand, though, how sometimes a bag can hold for only a few hours and then another one which I think I did the exact same thing will hold for a few days. 

Crazy isnt it!!  I just got a bunch of samples of Convatec....will let you know if it holds.

About the paste, use it liberally, and it will clear away prob within an hour.  I apply my bag etc right after I get out of the shower, have everything ready, paste on the barrier, and skin powder and spray, and usually, lol, it works....but you never know.  This is a costly adventure!  What kind and stage of cancer does your Mom have.  Mine was stage 3, but will be stage 2 after this chemo stops in 4 months....all my scans and nodes were negative.....thank God, and Bless you both!  Fran

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

by ajp1228 on Wed May 09, 2012 09:27 PM

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They first said it was stage 3 because the encoscopic ultrasound showed it was in the local lymph nodes, but she had chemo and radiation before surgery, so the pathology report said it was stage 2C - they found nothing in the lymph nodes.  She's been having a rough time since the surgery because she had a thrush infection and couldn't eat much at all for the first month.  Along with that came more hospitalizations for dehydration.  She was finally improving over the past 4 weeks, but she had her first post-surgery chemo last week and didn't do so well.  She had diarrhea the first night which got better after we called the doctor's office and they said to increase her Imodium, but she never replaced the fluid she had lost.  Then she kept eating less and less all week and got sick at her stomach over the weekend.  So she's been back in the hospital for dehydration once again.  They don't know if she had a virus or got sick from the chemo.  The oncologist said she might be finished with the chemo; we'll know more after we see him at his office next week.  I'm torn - I don't want the cancer to come back, but I want her to eat better and get her strength back and to have the ileostomy reversed as soon as possible.  The surgeon said he could reverse it after 4 months, so we're hoping we won't have to deal with the leaky bag situation too much longer.  If she was still on chemo, her oncologist had mentioned taking a break from it and getting the reversal; but we don't have another followup with her surgeon until the end of this month. 

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

by Super01Mom on Thu May 10, 2012 06:34 AM

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I wish you all well, I hope your experience isn't as bad as mine was with leaking bags, bags that would fall off, skin rashes, I even got a staff infection around the stoma, that I got courtesy of Balboa Military Hospital. I tried all kinds of diets to try to ease the diarrhea issues, no dairy and gluten- free helped some, immodium wouldn't do anything for me took the max per day, switched to lomotil a prescribed medication that helped a little better but maxed out on that too. I was told also in around 4 months they would reverse my colostomy but I ended up being attached to the bag for over 2 1/2 years. My issues with leaking bags got so bad I told my doctor the next time he saw me I was going to have a black trash bag around my waist attached with duct tape around my stomach, gotta laugh but it was so frustrating, humiliating, ruined my clothing. You know they really need to figure this out too many of us have this issue, my surgeron seems to think it is because of the smaller colon, well at least for me they took several feet of my colon when I had my lower anterior resection. Even after my reversal I go several times a day , still a prisoner of my bathroom, don't know what is worse the bag or sitting in the bathroom all day, and for me my spinkter muscle was damaged so when I have leaky stools I have no control, sometimes I think why did I ever have it reversed, the surgeron wants me to consider going back but I just don't know what to do anymore. I hope you ladies have better luck. At least we have each other for support on this forum, it's nice to know we are not alone and someone else understands exactly what you are going through. God Bless ladies, and you are in my prayers.

Sheryl

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

by ajp1228 on Tue May 29, 2012 04:02 AM

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We are having more leaky bag problems again...what we had been doing for the past few weeks seems to have stopped working.  It's been over a week now since we've had a bag stay on as long as 24 hours.  I've tried a few different things but nothing has helped.  Today was awful - at 6:00 this morning she kept having output for quite awhile before I could get a chance to put the bag on.  Early morning before breakfast is when everyone says is the best time to change it - not for us.  But this afternoon after lunch was even worse!  I finally resorted to the ice cube trick which I had read about somewhere.  (Put an ice cube over a towel and hold it on the stoma for several seconds.)  I had to do this twice and finally she slowed down - not sure it it was from the ice cube, though.  lol  And those aren't the only two times I had to change it today.

I hope the one I fixed at 9:30/10:00 tonight will hold for awhile - not only so we can sleep through the night, but also because she has a doctor's appointment tomorrow.  We are hoping her surgeon will be able to schedule her reversal surgery.  He has said 4 months all along, and that will be another 3-4 weeks.  So we don't need any leaky bags messing up our appointment.

Since I posted last, the oncologist did cancel the rest of her chemo; he said she wasn't able to handle it.  She wasn't eating much of anything except Rice Krispies cereal for a couple of weeks.  After 2 trips to the ER, a doctor there got home health IVs set up for her, and that has helped a lot.  I think the fluids have helped flush some of the chemo from her body, and she's been able to start eating more again.  She feels a lot better and is getting stronger, although she still has times when she doesn't feel well.

Thanks for letting me vent here.  If you're so inclined, plesae say prayers for us so that the bags stick better, at least through the doctor's appointment, and also that she can have the reversal surgery very soon and that she has an easy recovery from it.  With all the things that have happened this year, it's time something went right.

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

by retirednurse111 on Tue May 29, 2012 03:51 PM

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On May 29, 2012 4:02 AM ajp1228 wrote:

We are having more leaky bag problems again...what we had been doing for the past few weeks seems to have stopped working.  It's been over a week now since we've had a bag stay on as long as 24 hours.  I've tried a few different things but nothing has helped.  Today was awful - at 6:00 this morning she kept having output for quite awhile before I could get a chance to put the bag on.  Early morning before breakfast is when everyone says is the best time to change it - not for us.  But this afternoon after lunch was even worse!  I finally resorted to the ice cube trick which I had read about somewhere.  (Put an ice cube over a towel and hold it on the stoma for several seconds.)  I had to do this twice and finally she slowed down - not sure it it was from the ice cube, though.  lol  And those aren't the only two times I had to change it today.

I hope the one I fixed at 9:30/10:00 tonight will hold for awhile - not only so we can sleep through the night, but also because she has a doctor's appointment tomorrow.  We are hoping her surgeon will be able to schedule her reversal surgery.  He has said 4 months all along, and that will be another 3-4 weeks.  So we don't need any leaky bags messing up our appointment.

Since I posted last, the oncologist did cancel the rest of her chemo; he said she wasn't able to handle it.  She wasn't eating much of anything except Rice Krispies cereal for a couple of weeks.  After 2 trips to the ER, a doctor there got home health IVs set up for her, and that has helped a lot.  I think the fluids have helped flush some of the chemo from her body, and she's been able to start eating more again.  She feels a lot better and is getting stronger, although she still has times when she doesn't feel well.

Thanks for letting me vent here.  If you're so inclined, plesae say prayers for us so that the bags stick better, at least through the doctor's appointment, and also that she can have the reversal surgery very soon and that she has an easy recovery from it.  With all the things that have happened this year, it's time something went right.

I am so sorry to hear this Sheryl, I do have similar probs, emptied my bag 15 times in the last 24 hrs.  IV fluids are a weekly thing for me.  Had lots of nausea and reflux too.

Why do you want her to quit chemo?  Doesnt she need that for a cure? 

I dont think I have an answer, but after I get up, I drink 1 cup of coffee and then into the shower......I put a Viva paper towel bunched up over the stoma, and quickly apply the bag....sometimes it takes 3-4 tries, sometimes once.

God Bless you and your Mom.......Love, Fran

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

by ajp1228 on Wed May 30, 2012 04:46 AM

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First, just to clarify, I'm not Sheryl; you probably have me confused with someone else who's also posted in this thread.

The chemo doctor is the one who is discontinuing the chemo.  She developed too many side effects after only one treatment cycle and was hospitalized for dehydration a week later.  I had doubts that she was strong enough to handle the chemo anyway, but I didn't expect her to get that bad after just one cycle. 

The chemo was supposed to help prevent the cancer from coming back; everything they could find was already gone after the surgery (and the pre-surgery radiation and chemo).  It's been a month now and she's still not back to where she was before the post-surgery chemo, so I'm becoming convinced that more chemo would have done more harm than good.

We made it fine through the doctor's appointment this morning and he's scheduled her reversal for June 27.  I'm really hoping she doesn't have a hard time after this is done.  With everything she's been through, it's time something finally went good.

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

by retirednurse111 on Thu May 31, 2012 07:46 PM

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On May 30, 2012 4:46 AM ajp1228 wrote:

First, just to clarify, I'm not Sheryl; you probably have me confused with someone else who's also posted in this thread.

The chemo doctor is the one who is discontinuing the chemo.  She developed too many side effects after only one treatment cycle and was hospitalized for dehydration a week later.  I had doubts that she was strong enough to handle the chemo anyway, but I didn't expect her to get that bad after just one cycle. 

The chemo was supposed to help prevent the cancer from coming back; everything they could find was already gone after the surgery (and the pre-surgery radiation and chemo).  It's been a month now and she's still not back to where she was before the post-surgery chemo, so I'm becoming convinced that more chemo would have done more harm than good.

We made it fine through the doctor's appointment this morning and he's scheduled her reversal for June 27.  I'm really hoping she doesn't have a hard time after this is done.  With everything she's been through, it's time something finally went good.

Best of luck to you ??? your name???? and your Mother.  I would add her to my prayer list but I dont know her name.

 

So sorry that I got confused.........but guess what all I am going thru thats easy to do:)

 

Fran

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