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Colostomy

kitten0385's picture
kitten0385
Posts: 278
Joined: Apr 2009

Hi everyone,

I post on the esophageal board, but had to have emergency surgery last night for a colon blockage, not sure from what, they're leaning towards a tumor, the blockage is outside the colon pushing on it. I ended up with a colostomy bad and was wondering if anyone could lend me some words of insight as to living with one. They say I may be able to have it reversed and get rid of it in a few months...that all depends on how my chemo is working. I am on taxotere and irinotecan, as the cancer is in the fluid (ascites) around my organs. Thanks for any info on the colostomy bag. I'm still in the ICU at Mayo actually, and am looking for answers before I go home with it.

Thanks in advance!

Cathy

tootsie1's picture
tootsie1
Posts: 5063
Joined: Feb 2008

Cathy,

I have not had a bag, so I'm sorry that I can't really give you any insight. Just wanted to say that I'm sorry you're going through this, and I will pray for you.

*hugs*
Gail

Patteee's picture
Patteee
Posts: 950
Joined: Jul 2009

Mayo, my home away from home!! You are in great hands.

I had emergency surgery at Mayo in June 08 for colon cancer and ended up with a colostomy. It was reversed Feb 09. Dr CHUA, the best surgeon!! Anyway- as soon as they can they will hook you up with their stoma nurses- who are truly remarkable, wonderful nurses who will work with you as much as possible on it. They have the best, most wonderful attitude, and you can't help but feel better about it after working with them. Really the best thing that I could do for myself confronting it was to learn everything I could about the care of it and what to expect. It is what it is. Really lean on the stoma nurses- they are absolutely the pros with this and will support you through it!

mommyof2kds's picture
mommyof2kds
Posts: 522
Joined: Mar 2009

I agree with Patteee, I have a ileostomy and it took alot to get used to. I worked with the ostomy nurses and they gave me their pager to call them once I was home with questions. A couple of times I had to g o in and see them in the hospital because I was frustrated with leaking or appliance not fitting right etc.. and they worked with me and changed appliances a few times till we found one that worked.. You can also visit www.hollister.com and they will send you free samples, the other big one is convetec I think.. Best of luck to you.. Petrina

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

I have a permanant colostomy,and it takes a little getting used to,but you get used to it after a few months.You will know about how long you can go before you have to change it ,or clean it out.Talk to a colostomy nurse as soon as you can,they are a big help,and can answer alot of questions about such things such as irrigation,etc.I myself use coloplast products,but there are other good brands.Check the colostomy site on this web site,that will give you a lot of information.Best of luck!!!

khayman1
Posts: 5
Joined: Oct 2009

have you had any problems with a constant mucous discharge rectally since your colostomy.I have had it for 6 months now as my surgery was in april.This was my second surgery ,the first was for the rectal cancer.My doctor has no answers for me.Thanks for any info

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

khayman1 -

This is probably the world's best website dealing with ostomies!

http://www.uoaa.org

(BTW, your discharge sounds normal)

nudgie's picture
nudgie
Posts: 1482
Joined: Sep 2006

colostomy which was reversed in Feb 07. It does take some getting use to, but you can quickly adapt. I had to purchase a few new pants that came up above the bag; couldn't sleep on my tummy and could not control gas :). Also, I would carry a small bag around with me that included extra bags, cleaning wipes, baggies for disposal, etc.,

My husband was my ostomy nurse :). He would replace it, clean it for me and guide me through the procedure.

I did continue to exercise and all other normal daily duties / routine. It becomes part of you so sometimes I would function and forget about it.

kitten0385's picture
kitten0385
Posts: 278
Joined: Apr 2009

Thank you so much everyone!! I am feeling a lot better about having it. Pattee, you're right about the stoma nurses, just talked to one a few minutes ago, what an amazing lady!!!! I really appreciate all the info!!!!

Patteee's picture
Patteee
Posts: 950
Joined: Jul 2009

See? I knew it!! You will be a pro at it by the time you get dc'd.

Annabelle41415's picture
Annabelle41415
Posts: 6692
Joined: Feb 2009

Your ostomy will become you in a few months. One thing I can say is don't resent it or having one. It has saved your life. 6 of my 8 kids don't even know I have one and that is just a personal choice (only because I was dealing with cancer, surgery and all, I didn't want them to worry about this too). My husband helps me now only because I am changing appliances (whole new appliance switch), but after a few times together I will do it on my own. You will learn how to adjust to it, but never fear it. People do everything with a pouch that they did without one. Good luck and hope for a speedy recovery.

Kim

just4Brooks's picture
just4Brooks
Posts: 988
Joined: Jun 2009

I had surgery Aug 14 to remove a tumor (Colorectal Cancer) I will have mine till next March. One thing I've learned is when I empty it is to sit on the toilet backwards (facing the tank) gives me more room to empty the bag. Oh ya NEVER NEVER empty the bag into the toilet standing up. What a mess!!! LOL. My 3 year old thinks it’s just the coolest thing. Yesterday when I picked him up at preschool he ran over to me and had to lift up my shirt to show all has friends. KIDS!!!

Patteee's picture
Patteee
Posts: 950
Joined: Jul 2009

I hope you are doing better today! :)
One of the things my mother suggested when emptying the bag- put toilet paper in the toilet, just enough to somewhat cover the top. Then when emptying from a standing position, no more of the mess!

What helped me was changing from the o-ring, bag attachment (where the bottom opens up to empty) to a one-piece appliance-smaller, changed totally several times a day-, just took the entire thing off, put used one in a plastic bag, tied it up, threw it away, attached a new bag. They are smaller, more comfortable and really really cut down on the "bathroom mess".

kitten0385's picture
kitten0385
Posts: 278
Joined: Apr 2009

I just wanted to send out many thank you's again for all the pointers, and the couple of laughs!!! :0) I really appreciate it. I'm feeling pretty good today. Still in some pain from the surgery. I'm still in ICU, but get to move to a regular surgical floor tomorrow!
Thanks again everyone!!!

Cathy

mommyof2kds's picture
mommyof2kds
Posts: 522
Joined: Mar 2009

you just never know what kids are gonna do. My kids age 4 and 5 think it is cool to. They call it moms poop pouch.. LOL

Shayenne's picture
Shayenne
Posts: 2370
Joined: Jan 2009

I don't know how my words can be wisdomful, but wanted to lend some words of support.

I have a temporary colostomy, and got used to it really quick, it saved my life, I had a perforation in my colon, and had to have emergency surgery done on it real quick, and woke up from surgery with it on.

The ostomy nurse I had was awesome! He first showed my a DVD of what to expect, how to empty and change the bag, then physically showed me how to clip it, and do it myself. It is something to get used too, but really isn't that bad, it's just a different way of "Moving things along" lol...hope you are able to be as accepting as I have gotten to it. You'll be fine. I even buy clothes now longer and bigger to just even hide the bag, where no one even sees it, I hope you are ok with it, just think of it as something extra to take care of in your body :)

Any questions you have about it, just ask :) Good Luck with it!

Hugsss!
~Donna

pamawi
Posts: 3
Joined: Sep 2009

Hopefully your ostomy nurse told you about any ostomy support groups in your area. If not ask about it and check the www.uoaa.org website to look for local chapters. Sometimes there are groups that aren't listed on the UOAA's website because they aren't affiliated with the national group.

The www.uoaa.org and c3life.com websites have alot of online support for ostomates.

If you have problems with your appliance ask for a home health care ostomy nurse (CWOCN). They generally have visiting programs and can have someone with a similar diagnosis and surgery visit with you by phone or in person.

I hope you are doing well!

Pam

WinneyPooh's picture
WinneyPooh
Posts: 318
Joined: Jul 2009

Welome to our group what a terrible way to join, I am still in recovery too, going on 9 days here in hospital, i want to go home so bad, I can hardly sleep and i am in pain, I am wating to pass solids into the bag, just had full liquids today and i can hardy believe it has been 21 days since i had real food, i am also wondering what to expect and not thrilled to death about it. I will have radiation as soon as i am able because appently tumor grew and blocked me off,
I am tring to hang in there, my advice to you is to get up and walk as much as possible and and stay positive, you will probally throw up once they let you go to liquid diet, broth is gross, ask nurses for strained chicken noodle soup, that a little better, drink what you can,
sleep when you can, and don't look the wounds yet, the bag will only make you sick at this point, looks like your bleeding to death, but trust me your not. By 4th or 5th day you'll be ready to plan your escape, but no they wont let you leave (everyone else on the floor goes home, not you!!, by day 5/6 they will start you on full liquids, go for it you can eat this, cream of chicken goes down, and stays down, ( had some exploratory stuff the first 2 days here, ). I hope you are ok, hang in there.
Hugs and prayers
Winney

kitten0385's picture
kitten0385
Posts: 278
Joined: Apr 2009

Hi everyone,
Thanks for all the responses!!
I am doing fine with the colostomy, but am in the hospital again because I have a blockage now in my stomach so my body isn't passing any bile, so I'm on an ng tube, and also have a chest tube draining fluid from around my lung, in which pneumonia finally just cleared up. I tell ya, if it's not one thing it's another! ha. All of you are right, the ostomy nurses were amazing! I also found the appliance, from Hollister, that works best for me. Now I just need to get these other things figured out here so I can start chemo again!! What a trip it's been the last month!
Cathy

Shayenne's picture
Shayenne
Posts: 2370
Joined: Jan 2009

....to hear that Cathy! I've had blockages before as well, with the ng tube and all, even had to have surgery for one, and they are so painful, I just got back from the hospital being there overnight last night because I thought I was having another one, but it passed, and I just got home today, thank god, it seems that after every other chemo I have, something goes wrong, and you're right, it always seems like it's one thing after another, I just want a month where I'm not in a hospital or at a Dr.'s office, and I may then jump for joy!!! These past 9 months has been very hard, but we're getting it now, we're getting used to it.

I hope you feel better soon, I know exactly what you're saying! lol

Hugsss!
~Donna

Qmarcus
Posts: 1
Joined: Oct 2009

To make your pouches last a lot longer check out a thing called Ostyclean, I have used mine for 2 years and can't imagine going back to cleaning my pouch by hand.

Good luck Cathy!

tiny one
Posts: 467
Joined: Jan 2009

I had an ileostomy for 10 months and then it was reversed. It spared me of the diarrhea many have when they have chemo. I could eat anything when I had my ostomy. There's not much you can't do when you have one. Find a good appliance, you may have to change more when it's hot out or when you're super active. A good book is The Ostomy Book to read. The only way someone knows that you have this is only if you tell them. Carry extra supplies with you, and maybe an emergency stash in your vehicle, just in case. I used to carry a plastic water bottle and used this to rinse out my bag. I did this each time I had to urinate. Don't get the water up around the appliance, it will stick better. Also you can use a warm blow dryer to make it adhere better to your skin. Don't use soap around your stoma area only use warm water. It's less irritating to your skin there. Remember your stoma has no feeling.

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