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Colostomy questions

Chemo_Princess's picture
Chemo_Princess
Posts: 105
Joined: Aug 2009

Hello all.  I was diagnosed with stage 3c Ovarian Cancer in April 2009.  I had surgery(hysterectomy, splenectomy) and 6 cycles of chemo--Cisplatin, Taxotere and Taxol.  After all that the Pet scan showed a tumor that survived.
The tumor is located on my rectum. I've been on Avastin for 6 months and while it is shrinking the tumor my doctor said it will not completely shrink it. She says my only chance of being cancer free is a colostomy. 
I am hoping to find someone who has been thru a colostomy. I'd like to know about healing time, if it stinks all the time, if you can hide the bag under clothes. Also I am 31 so if anyone my age can offer advise that would be greatly appreciated.
Blessings to all of you!
Natalie

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

Hi Natalie

Colostomy? Well, you have come to the right place! There are many of us who have dealt with this and many who still are. We are always sorry to have someone join our little group- but happy you found us, so glad you did :)

My colostomy was temporary- due to my colon resection was an emergency- no time to prep the colon so ended up with a colostomy. Had it for 6 months while I went through chemo, then it was reversed. (just wrote about that below!)

First, if there is anyway you can meet with a stoma nurse BEFORE the surgery- actually the sooner the better. They are creatures of a different stripe and this world is blessed to have them. Each and everyone of them. They are fountains of information, nothing is off topic or out of bounds, they deal with it all. Surely God has a special place for such dynamic, wonderful beings! Truly, you will feel so much better after talking to them-

I approached mine as being along these lines: Each of us poops, and accept for those with strange fetishes, it is in private. Nothing anyone talks about, but we all do it. Some of us poop through a hole in the butt while sitting down, others into a bag through a hole in the front. I learned a lot about it from the stoma nurses at Mayo after the surgery- and they were the ones I called when I had a problem. Even went down several times just to have them check it and have them give me additional guidance.

Does it stink? yes, if the seal is not good, it will smell. One of the trips I made to Mayo was specifically for this- I could not get enough of a good seal to entrap the smell. They finally got me using a different appliance, where the seal was better- and then no more problems. Does it hide under clothes? Yes- I would fold mine over and tuck it in my undies.

The actual changing of it- I changed mine several times a day- kept a bunch of plastic bags in the bathroom- would light a few candles, use some room spray and then take it off. Yes, it does stink- I think most of us would agree with this. Not sure exactly why, but for me it was way worse than what was coming out of butt into the toliet smell wise. I would drop the bag (I wore one pieces that I didn't have to clean out or dump out, I just took them off and threw the whole thing away) into a plastic bag and tie up the bag so ALL smell was enclosed, then pitch it.

Bunch more will chime in with their experiences. Best of luck!

coloCan
Posts: 1956
Joined: Oct 2009

how soon you're up and trying to walk while still in hospital waiting for them to let you eat some solid food. However long op takes, you'll be out of it (mine had problems, lasted 6 1/2 hours, spent 8 days in hosp cos of setback 4th day-but that was my experience only), You'll have some tubes and such sticking out of you when you wake up (drainage cups,etc)and be in pain so always ask for more pain meds both in hosp and for when you go home, after 5 or so days if all goes well.
As for living with bag:no one knows I have it. I've only recently been able to really start walking around(Op was sept 2, still doing postop chemo)and tho I use a cane now, I always wera long shirts; drawstring pants (no more belts or jeans jet-you might dress a bit differently,as a woman but you can hide the bag (Idon't fold minbe, or use a belt,etc).
For now, worry about getting thru and recovering from surgery while you get accustomed to removing/replacing /emptying bag and learn to look at the new you in the mirror.
I was 26 days short of 59 when I had my colostomy. If you trust your surgeon and other docs and have someone to help you out till you can do for yourself, with a postitive attitude you'll do fine.
You can learn on this site about adjusting to life after/during recovery after your op
Hoping for a smooth operation with minimal pain and a swift recovery...STEVE

PS:AS for the "Stink".....Thats you, you're alive if you make it and smell it. I've learned to savor it in a way.

geotina's picture
geotina
Posts: 2118
Joined: Oct 2009

I am so sorry you are experiencing yet another cancer. My hubby does not have a colostomy but I have learned from this board that placement is important. On ostomy nurse can help you with this, they will go over clothing, underwear, etc. and many times can mark your tummy for the surgeon where the stoma should go.

Welcome to the board but I am so sorry you have to be here, especially at such a young age.

Take care and let us know how things go.

Tina

zenmonk
Posts: 198
Joined: Nov 2009

Its not bad. Its a managment thing. I know my fears of getting one were much worse than actually having one. I was pretty depressed about the whole thing in the begining but I got over it. Now its just part of my life (and most definatly the reason I am alive). If it smells all the time then you are doing something wrong. I forget I even have it most of the time. You have to learn to take care of it really good or you will have problems. You can hide them under clothes but some bags have a skinnier profile than others. It takes some time to figure out which products work best for you. I can pretty much do what I did before and I am very active. I think the only thing that bugs me sometimes is when I am in a meeting or some public place and it makes noise. Its only happened about 3 times in 2 1/2 years so I can complain. I hope this helps you in some way. Take Care

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

I have a temporary colostomy, and was in the hospital for about 10 days with it, before I was released home. It was a painful recovery, I won't lie, but it saved my life. I had to have it done as an emergency colostomy, since I got to the ER with a perforated colon. My bowels were going into my belly, and the surgery itself took about 5-6 hours, and they washed my belly out with like 11 liters of seawater, as they said, but they got it all, alot of the tumors, etc...

I was sent home with a wound vac, which they used instead of the wet/dry dressing, as this cut down on the risk of infections, and would heal it quicker. The black sponges they put in the wound (which was VERY DEEP) hurt like heck changing, I had to have 3 home health nurses that came 3 times a week to change it, and hook me back up to the vac, which sealed like those meats you see getting vacuum sealed in commercials lol..but these nurses were awesome, and it took about 5-6 weeks till I didn't need the wound vac anymore, and I never had any infections, it got better each week, so it does hurt till the end, but my wound is from an inch past my belly button all the way up to my chest..

It's really ok with me, I was not traumatized about getting one, and to this day, still scared to even get it taken down, and don't want to go through the pain of another surgery, and more scar tissue, and risk of blockages, which I got alot in the beginning, and all that.

I don't stink, I use paste and seal it up really good. I change my appliance every 3-4 days, I have a two-piece Convatec appliance, and stoma powder, skin prep to put a barrier between your skin and the appliance and then paste will help, you can't change it too much, or you will break down your skin, I have never had any problems with my skin or anything. Now, I will say accidents can happen with it, and have had it bust open, and crap everywhere in my bed, all over me, and that's the worse that can happen, OR you can also be in a nice public place and all of a sudden, get really gassy, and start making noises that you can't control, it's embarrassing yet funny at times with me, you have to have a good sense of humor, I must say and learn to take control of a situation.

But, I watched a DVD that the stoma nurses also shared with me first on how exactly to change it, and wash it and you should request that as well. The stoma nurses are a huge help! Any other questions, we're here to help ya!

Hugsss!
~Donna

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

Make sure you spend some time well before the operation date,
to find the exact spot for placement of the stoma. You want to
insist on the "spout", the amount the stoma sticks out from your
body, is sufficient. With an ileostomy, it's 3/4 to 1 inch.

The placement of the stoma is very important, especially if you
plan to be sexually active. Most experienced colorectal surgeons
are aware of the situation, but as many aren't. It's amazing how
many surgeons have absolutely no knowledge of the care required,
much less the interference with daily duties, of an improperly
placed stoma.

There are also many colostomates that can tell you about
irrigation, and how it enables them to empty every couple days,
and how they can go without wearing a complete pouch for
extended periods.

The website "http://WWW.UOAA.COM" if great for information
gathering, regarding stoma issues. Weigh the data well, since it's all
opinions, and can vary as far as fact.. Also beware of privacy
infringements by the web site. I've been made aware of some serious
problems lately by former members. I don't know the validity of the
complaints, but trying to stay anonymous should be the rule on the
web anyway..

As far as the colostomy being absolutely needed? A second and
third opinion is needed, and you are entitled to at least that. Get
other opinions from qualified colorectal surgeons and gastrointestinal
specialists that are not of the same group or organization. They have
experience with cancer operations, and the quality of life expectations
one should expect afterward, and can give you their opinion regarding
the necessity.

You'll do fine regardless of the need for a pouch or not !

Think healthy!

John

coloCan
Posts: 1956
Joined: Oct 2009

by calling ConvaTec (1-800-422-8811) or Hollister (don't have # nearby), both of which make ostomy supplies. You can also request free samples of their products to test out....steve

Fight for my love
Posts: 1530
Joined: Jun 2009

Having a colostomy is not as bad as your imagination.My husband has a colostomy,he learned to take care of it very quickly,only after a couple of weeks out of surgery,he started to practice changing the bag by himself.Don't worry about the smell,if you have the right supply and you take good care of it,it is not stinky.My husband can hide the bag with colostomy belt which is sold by ebay,this is working very well for him.Also there is a company called"ostomysecrets",you can google it,the information will show up.This company is owned by a lady,she has an ileostomy,she makes all kinds of things to help women with the same problem.Wish you the best.Take care.

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

Hi Natalie.. It looks like you have everything coverd on how to take care of it and what to do if you cant. I have what's called a iliostomy. One thing that you need to remember is not to have it get you down. It's a lot to take in when looking at it but remember it's just part of life and now part of your new life. Have fun with it. I named my stoma Leaky Saca Sheet. My 4 yo son calls it dad's poop bag and he thinks it's the coolest thing ever. LOL

Good Luck
Brooks

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

I have had a colostomy fora little over 1 1/2 years.First you should try and see an ostomy nurse,just like it was said,and then decide where you want it placed.I had mine placed as low as possible,so it fits below my belt line.I wear it under my clothes,and no one can tell I have one.The only problem is with gas,there is no way to control it,so I take inti-gas pills,several times a day,that helps.healing time is different for everyone I was allmost healed at 5 weeks when my stitches tore open,so it took another 4 months to completely heal,but there were alot of other problems also,eating,etc.It does not stink all the time,and there is a deoderizer that you can get to put in the bag.After awhile it just becomes part of your routine,and you don't think about it.In some ways it's convenient,because you don't have to run to the bathroom all the time.My ostomy nurse marked my spot just before the surgery,as low as she could get it.My surgery was 6 hrs.,and I needed 3 pints of blood.Good luck to you.I always keep extra supplies close by,just in case.WE are here if you have any other questions.

Crow71's picture
Crow71
Posts: 681
Joined: Jan 2010

Hey Natalie -Did you come to the right place or what? You've gotten lots of good advice here from my fellow semi colons. I'm 38. I've had my colostomy since August '09. Like Donna mentioned, the colostomy saved my life. It will take some getting use to, but I've been able to adjust, and you will too. Having it has not held me back from doing the things that I want to do. I coach my 2 daughters' soccer teams, I go to meetings etc. My kids still think it's hilarious when I make farting noises. I named my stoma Stewie. Tonight at dinner Stewie was very talkative. Finally my daughter said, "Stewie!! Will you please be quiet!!" It sucks sometimes, like when my bag blew out at a U2 concert, but I just laugh it off. If anyone has a problem with the life saving noises I can't control, they can totally kiss my stoma, or my non functioning butt - whichever.

You've been through a lot. Sorry you have to go through this too. Will the colostomy be temporary?

Take Care,
Roger

Chemo_Princess's picture
Chemo_Princess
Posts: 105
Joined: Aug 2009

Thanks for the information! I'm still not sure if I am going to proceed with the surgery but this info will definitely help me make a decision. My cancer is very agressive and may come back, that's why I'm not 100% sure about the colostomy. It would be permanent and I don't want to end up with a bag of poo and cancer! Blessings to all of you!!

Buzzard's picture
Buzzard
Posts: 3073
Joined: Aug 2008

The ostomy is a cakewalk...If you are 31 then sex becomes an issue, but if you die because of not wanting an ostomy then sex isn't an issue in the first place. Seriously, the ostomy is easy and very very livable with. The mind game it may play on you is simply that, a mind game, and one that anyone can get through. It doesn't stink , unless you just neglect it. It does like to fart when it wants to but a simple hand over takes care of that, but most don't hear it to begin with. Do the bag and get the clear margins that you want. I was in Tuesday and out Friday with surgery. Colostomy, and all and it took me about 4 weeks to get back to my "new normal"..But it is a lot better than the alternative I had.........Love and Hope to you , Buzz

dirtyshirt
Posts: 10
Joined: Feb 2010

Some very good advice here. I can't say enough about choosing the products that work best for you. I don't want to be a commercial, but I eventually found some ostomy care products that enabled me to live with my stoma quite well. It was temporary, but I lived with it for more than a year, and was never sure when it would be reversed for a bunch of reasons.

I highly recommend rings over paste - the skin will heal and stay healthy under rings. Find a bag system that you like - at your age, I imagine one with throw away bags of different sizes for different occasions and clothes would be best. If you need more info about companies or websites, please reply. Like I said, I don't want to be anyone's commercial, but I do have some suggestions.

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