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Advice on colostomy

Goldie1's picture
Goldie1
Posts: 264
Joined: Sep 2011

My husband had his LAR surgery on 1/30. We were hoping for an ileostomy but there was too much damage from the tumor and radiation so he needed a colostomy which is most likely permanent. One of the nurses gave me a crash course in the care of the stoma and they told me someone will go into more depth with me soon. I just wanted some personal opinions from the good people on this board. Anything from care, products, adjusting to a colostomy, I'm all ears!

Thanks so much,

Ellen

sfan428's picture
sfan428
Posts: 32
Joined: Jun 2010

Hi Ellen, it looks like your husbands treatment has been very simalar to my own. I was dx'd stage iv on 5/28/2010 with mets to to the liver. I have had "the bag" (affectionatley named stinky) since 9/8/2010 and while it did take some getting used to, I think that we have established a mutual respect for one another. Considering, I don't know where I would be without him.

All kidding aside, it certainly hasn't negatively impacted any part of my life to the extent that I am unable to deal with it. I am still able to go to the gym, my wife and I are still intimate, and traveling for work (which honestly, had me the most worried) has been no problem at all. I think he will find that it will only take a month or two to become completely acclimated to it.

As far as tips on care and products, I use a holister closed ended two piece device, which allows me to easily remove the old pouch and apply a new one without having to apply something new to the skin each time. I usually use two to three pouches per day and change the wafer every 3 days. I have found that this works the best, especially when you're out and about. There was nothing worse than trying to emply an open ended pouch while at a restaurant or in the airport. You may also want to check out the United Ostomy Association of America's website (www.ostomy.org), lots of great tips on there. It was a huge help for me in the beginning.

This board is great too. If there is anything you have a question about, you can bet that someone on here has been through it. I wish you and your husband all the best and please feel free to PM me if there is anything I can help with.

Shane

Goldie1's picture
Goldie1
Posts: 264
Joined: Sep 2011

The nurse at the hospital gave me similar advice. Change bag as needed and change the wafer every 3 days. A bit intimidated but ready to help my husband adjust. Can I ask you if you use any type of colostomy belt? And do you order your supplies through a website? Could you let me know a little bit more about the holster device you use. Thanks so much!

Ellen

karguy's picture
karguy
Posts: 1024
Joined: Apr 2009

I have had a colostomy since 7/08,and it will become part of a routine after awhile,and you will pick up some tips along the way,like putting a little mouth wash in the bag to help with the smell.As long as the filter dosn't get soiled the bag can be used for several days.I use a two piece coloplast,open end bag,and what ever type you use,you will find what works good for you.When i'm out,and have to empty the bag,I just open my pants,lean over the toilet,open the bottom,and empty it,then clean out the bottom of the bag with wet towels,fold ot back up,and i'm good to go.You can go to the web site mentioned ,and you can find out how different food will effect your stoma,and waste product.Good luck.

Goldie1's picture
Goldie1
Posts: 264
Joined: Sep 2011

Today at the hospital, I mentioned your mouth wash tip to my husband. I am just wondering how to find what works best. Should my husband try a number of products to see what works for him?

John23's picture
John23
Posts: 2140
Joined: Jan 2007

Re:
"We were hoping for an ileostomy but there was too much damage
from the tumor and radiation so he needed a colostomy "

I'm trying to figure this one out..

A tumor or radiation damage to the colon, rectum, etc can
require either a colostomy or ileostomy. If the damage to the
colon is -extensive- and more than 3/4 needs to be removed,
an Ileostomy is usually required.

Your profile states that the problem was colon cancer, not
cancer of the small intestine...? It would be safe to assume,
that if -all- the damage was in the colon, the remedy would
be an ileostomy (as you say you wanted)....

So why the colostomy?

Just curious..

I have an Ileo since 2006. I have some help files on the
"blog" at my profile page (for whatever that's worth?).

There's worse things in life than an ostomy.

Be well!

John

coloCan
Posts: 1956
Joined: Oct 2009

likely the circumference will shrink a little, which means the hole in the wafer (if a two piece system is used)will change accordingly. I use ConvaTec two-piece where you have to cut hole to size (you can order wafers precut); i try to keep wafer on as long as possible to minimize wear and tear on skin and empty/change pouch as need arises. Make sure you get an adhesive remover wipe so you don't pull off wafer like you would a bandaid.....steve

coloCan
Posts: 1956
Joined: Oct 2009

inadverdent duplicate.......Walking as much as possible will help recovery tho at first it might be painful; sitting for me took some getting used to and i recall needing painkillers for several months but that was just me

Goldie1's picture
Goldie1
Posts: 264
Joined: Sep 2011

My husband is still in the hospital and he has been in a great deal of pain. When he is lying down, he is fine. Once he sits up or walks...he is in agony. We are trying to get him to walk as much as possible and we are hoping the pain lessens in time. He has been on pain meds for so many months and he would like to wean off of them gradually. Thanks for your reply!

Ellen

Goldie1's picture
Goldie1
Posts: 264
Joined: Sep 2011

My husband had 10 inches of colon removed. Originally, the surgeon told us that my husband would need a ileostomy for 6-8 weeks while he healed from the LAR surgery. After surgery, he said my husband was so blocked/packed with fecal matter that he was concerned about contamination and felt a colostomy was needed. I must admit, I am still quite naive about the right questions to ask, although I try my best. I did not ask the surgeon why a colostomy was done rather than a ileostomy, which I should have done. I will say, that after months of my husband living in the bathroom and in constant pain, I am hoping that he will be more comfortable once he adjusts to the colostomy. My family agrees that it could be worse so we are prepared to support this new way of life. I will check out you blog and thanks so much!

Ellen

Lovekitties's picture
Lovekitties
Posts: 3348
Joined: Jan 2010

You have mentioned several times that you and hubby were 'wishing' for the ilio but got the colostomy instead. Is that because you thought the ilio could be reversed?

I am on expert, but from what John23 has shared, if you got to have one or the other, a colostomy is the better choice as it allows for more absorption of fluids and nutrition. T

You asked about where to get supplies. If you go to the website for Hollister and ConvaTec you can get their phone numbers. Talk to their person and request a sample pack of their products. They will gladly send it at no charge. You could also ask the stoma nurse about supply availability locally.

I personally use the ConvaTec two piece drainable, but each person has to find what they are most comfortable with. I use the drainable as it reduces the out of pocket costs considerably (I don't have insurance).

You mention that your hubby is still in considerable pain even with meds. Has he had any bowel output since surgery? If not has the doctor checked to make sure there has been no twisting of the bowel? This sometimes happens and did to me. They had to go back in and straighten it out. After that everything was soooo much better.

Hope that your hubby is soon feeling better not only physically but emotionally and mentally about having a colostomy. I have found that life goes on very well with one. You just have to figure out how to add it to your routines.

Hugs,

Marie who loves kitties

Kenny H.'s picture
Kenny H.
Posts: 503
Joined: Aug 2010

Like the 2-piece system and use the closed in pouches while "on the road" or working and while at home I use the drainable ones.
Make sure you get a "travel kit" with extra wafers, bags, wipes ect to take with you when going somewhere in case a emergency where to happen. I rarely any but its good to have them with you in case you get a "blowout" or something.
I also apply a seal ring around stoma before installing wafer. I can usually get 6 days out of a wafer using them depending on output.

I get supplies from Liberator Medical Supply delivered to my door. (3 months worth at a time) they accept most insurance/medicare. 1-800-755-6531. Good luck and a ostomy is WAY easier to deal with than you think.

Goldie1's picture
Goldie1
Posts: 264
Joined: Sep 2011

The hospital sent us home with the two-piece by Hollister. I think we are going to stay with that brand as it seems to be working fine and is easy to apply. A travel kit will go with us everywhere! Thanks for the name of a medical supply company...wasn't sure where to start regarding that. Also, we were curious about a colostomy belt. Do you use one and if you do, what brand?

Ellen

Goldie1's picture
Goldie1
Posts: 264
Joined: Sep 2011

I think our thought process was that the ileo was going to be temporary but the colostomy would most likely permanent. But, since learning more about the colostomy, I believe it was the better outcome for my husband. He came home from the hospital today and we are feeling more confident. His bowel output has been good but very liquid. We were told in time that it should be more solid. The hospital sent us home with the two piece from Hollister and so far, so good.

Thank you for your good wishes and support!

Ellen (who loves Golden Retrievers)

Lovekitties's picture
Lovekitties
Posts: 3348
Joined: Jan 2010

Very glad to hear that hubby is home from hospital.

I was advised to eat lots of protien just after surgery to help with the healing process. While I wasn't really up for meat, I did do peanut butter, cheese and the like.

As to the output, white bread toast is one of the things which will help bulk things up, as will bananas and white rice. Just add a bit at a time to get the right amount as you don't want to over solidify.

Best wishes to you both and if you have any more questions about the colostomy or appliances just shout them out here and those of us who are in the know will try to help based on our own experiences.

Marie who loves kitties...Goldie is one sweet looking doggie

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