I hope its ok if I ask this group for some input......regarding a permenant ostomy

pjs62

Good morning!

Well since my cancer is anal, I usually communicate with that 'group'. But a few suggested I ask for some input from you all because I do have a few questions about an upcoming surgery....& a major 'life change'.
In July 2010 I was diagnosed with stage 3 anal cancer. I went thru the 'traditional treatment' & in Oct. 2010 I was in remission. But Aug. 2011 I was very sick & after a week in the hospital going thru tests & biops.....they said the cancer was 'recurrent'. My drs at that time said only thing they can do is APR. I couldn't wrap my brain around this! So my husband & I did alot of research, asked many questions, & found another cancer center (about an hr from home) for a 2nd opinion. Well yes the cancer is there but stage 2 now. So they did remove the tumor & was going to do brachy therepy. But initial pathology showed cancer was gone. There's some dysplasia cells to watch. But my oncology dr brought my case to the board because he's concerned with some 'questionable cells' showing on the report. (this is the 3rd time he discussed my case) The result is for me to have the APR surgery with permanent ostomy. (or continue going every 3 months for biops, dx, etc)
I know I went to a different dr because not wanting this surgery. But let me also say this about my 'old drs'.....I haven't heard from any of them since Sept. to see if I'm ok or what decision I made. My 'new drs' call me direct to see how I'm doing, they take time to answer all our questions & address our concerns. They even arranged for me to meet with the ostomy nurse & a lady who's had one for 8 years now.
So although I do feel more confident going forward with this surgery, I'm still very anxious & nervous. I'd welcome any advice from those of you who've had this surgery & am living with an ostomy. I do have a few good websites but sometimes personal experiences help answer questions better.
Thanks so much in advance. Blessings & hugs to you.

taraHK

me
I had APR surgery for a very low rectal tumour -- almost 9 years ago.

Now of course a permanent colostomy is not something anyone wishes for. But I can tell you it can be OK. I lead an active life (hiking, swimming, jacuzzi:)), I work full-time, I can wear almost anything I want and -- excuse me for bringing up something so sensitive -- still have an active "intimate life". It does take some time and adjustment -- some of it practical, a lot of it psychological. I should also add that I am able to do "irrigation", which not everyone can do after permanent colostomy. Worth looking into.

If you end up going this route, my #1 piece of advise is to ensure that you can meet with a good stoma nurse before the surgery -- and who can help you out a little after the surgery too. Extremely valuable -- for ensuring best possible placement of the stoma prior to surgry and for helping with management after (including, in my case, giving me samples of various products so I could sort out what would be the best option for me).

you may already be aware of the American Ostomy Association website (sorry I don't have the URL to hand) which is also a great source of information. Also a website run by Roz out of Australia (chemobrain sinking in here....)

Good luck!
Tara

John23

PJS62


You might want to read and ask questions here also:
UOAA Discussion Board

Prior to surgery, you should make sure you have the spot for
the ostomy marked. Usually, the best spot is about 4" to the side
of the navel, and about 4" below your belt line.

Many WOCN (ostomy/wound care nurses) take the time to
have you wear a pouch (semi-filled with applesauce, etc) at
the location for the stoma, to give you an idea of how it will
feel having one.

It's important to take the time prior to surgery to insure that
the stoma will be in the best spot for -you-. Life can be hell
if it's placed in a spot that interferes with your normal life.

You should also demand that the stoma is placed on a flat
area, free of normal creases and folds of the skin. Doing so
will allow for better and easier servicing of the appliance.

Also.... and one thing that's too often overlooked by surgeons,
is that the stoma should protrude from your body by 3/4 to 1 inch.
That will provide what is called a "spout", and make your life with
an ostomy 1,000,000 times better! The "spout" will allow the waste
to enter into the appliance easily and keep seepage under the
appliance to a minimum.

It will take about 6 months for the new stoma to "settle in",
and during that time you will experience problems of leakage.

It takes some time to experiment with various makes and models
of appliances before you finally settle with one specific type
and brand. And that, too, is subject to change over time!

I used Coloplast Assura and Sensura appliances since 2006,
but in 2011 an operation that removed 1/2 my small intestine
changed my body chemistry. The Coloplast brand will not
stick to my body anymore! I changed to Convetec (Durahesive)
and that has resolved the problem.

So expect problems, and when you don't have any, have a beer.

There are many things the surgeon and nurses neglect to tell
patients regarding an ostomy. A real simple one, and included in
every manufacturer's literature, is to empty the pouch when it is
no more than 1/3 full. Simple, but overlooked.

Rather than write a book here, click on my name and go to the
"blog" section of my page. There's some information there regarding
ostomies that may be of help to you.

Ask questions anytime! This is a life-changing event, and doing it
right the first time can make your life a world better!

Good luck; stay healthy!

John

VickiCO

Ditto
PJS62, I too have a permanent ostomy. I was DX'd with rectal cancer, with my tumor being only 2cm inside the anus. I did the chemo, radiation, surgery, more chemo, even more chemo routine, added a few minor stretching and correction surgeries, and it was finally determined that I needed the ostomy. I armed myself with knowledge and a very good ostomy nurse (not to mention the best surgeon available) and off we went.

I agree with everything that John and Tara say about it. You can lead a normal life. I run my own business, travel constantly, and am very active in all aspects of life. I will add that my stoma is flat, or even inverted somewhat. My ostomy products supplier (Edgepark in my case) worked with me to find a solution and they did - convex wafers. I have virtually no problems any more.

I especially want to point out the importance that John specified as to location of the stoma. You do not want it too high. Be sure you get to "test drive" a fake one before hand, and try on lots of clothes with it. I am a plus-size person, so I have to be a bit careful about tight-fitting pants (my tummy already protrudes enough!) but that's it.

Good luck to you and many hugs. Oh, and those 'first" doctors - forget them. Sounds like you have a good team now.

Vicki

tommycat

Hi, I've been following your
Hi, I've been following your story on the Anal Board. I, like TaraK, had a very low rectal tumor and was treated the same way and had many of the problems associated with treatment for anal cancer. However for a year I had a temporary ilestomy so that my rectum could heal from all the radiation, surgeries, etc.
I cried when I first got it and really felt that although my life was being saved, my femininity and sexuality were going out the window. Well, at first they did as I was clumsy with the device and very self conscious.
After having it for four months, I (almost) forgot about it! Seriously.
My ilestomy was reversed Oct. 2010, and this year has been a struggle as my body tries to adapt to missing parts and new routes.
It's not going to be easy--esp. at first--but you will find a way.
Will be thinking of you and following your journey....
Your Friend in California~

coloCan

tommycat said:

Hi, I've been following your
Hi, I've been following your story on the Anal Board. I, like TaraK, had a very low rectal tumor and was treated the same way and had many of the problems associated with treatment for anal cancer. However for a year I had a temporary ilestomy so that my rectum could heal from all the radiation, surgeries, etc.
I cried when I first got it and really felt that although my life was being saved, my femininity and sexuality were going out the window. Well, at first they did as I was clumsy with the device and very self conscious.
After having it for four months, I (almost) forgot about it! Seriously.
My ilestomy was reversed Oct. 2010, and this year has been a struggle as my body tries to adapt to missing parts and new routes.
It's not going to be easy--esp. at first--but you will find a way.
Will be thinking of you and following your journey....
Your Friend in California~

I Iook at it this way: Have Bag, Will Live......
As i don't think i had a choice in this matter, i did what was proposed......Most difficult of all was accepting the new me as me from here on out.....The alternative WAS NOT acceptable!!!!! Twenty-seven, almost twenty-eight, months since my rebirth as an ostamate and you leaern there are some advantages too......

You'll learn how to live with an ostomy here....steve

zirotra

my experience
I got permanent colostomy done due to urgency of cancer and given my age. its not the best thing in the world but obviously comes with practical issues to deal with. It doesn't suit people very well who are obese like me. you have to make sure the kind of bags you wear fits you well. there is always issue with gas passing and along with the cancer treatment the biggest trouble is getting diarrhea. And if you are not gas kind of person then you dont have to remain cautious about farting in front of people you are meeting at work or in home settings. You cant even say excuse me **** the stool and gas passing is not in your control anymore due to lack of sphincter muscle. Said that everyne is unique and it will take some time for you to develop a strategy that will work for you and ofcourse you can live with it and you hav to learn to manage it. Also make sure that your supplies keep coming and make some arrangements to have supplies available overseas if you travel on a regular basis. and yes my worst nightmare is bag leaking in an airplane. It happened once and i had to stay inside the toilet but i cant blame anyone i was going through chemo at that time and i shouldnt have travelled Good luck. Its going to be a life saver and its not a joke.

Lovekitties

Hi
I have had my colostomy since March 2010 and have been doing very well with it.

One of the things that helped me accept that life could still be good was a book my ostomy nurse loaned me. It is called "The Ostomy Book: Living Comfortably with Colostomies, Ileostomies, and Urostomies" by Barbara Dorr Mullen who underwent colostomy surgery and Kerry Anne McGinn, RN, BSN, OCN, is a certified oncology nurse at the California Pacific Medical Center.

The book is generally available.

It is a bit of a life change, but not as scarey as one might think. After a little while, it just becomes the new normal. It certainly doesn't have to impact your life style to any great extent.

As things progress, if you have any questions, shout them out here and we will help as we can.

Hugs and Merry Christmas to you and yours.

Marie who loves kitties

Kenny H.

Lovekitties said:

Hi
I have had my colostomy since March 2010 and have been doing very well with it.

One of the things that helped me accept that life could still be good was a book my ostomy nurse loaned me. It is called "The Ostomy Book: Living Comfortably with Colostomies, Ileostomies, and Urostomies" by Barbara Dorr Mullen who underwent colostomy surgery and Kerry Anne McGinn, RN, BSN, OCN, is a certified oncology nurse at the California Pacific Medical Center.

The book is generally available.

It is a bit of a life change, but not as scarey as one might think. After a little while, it just becomes the new normal. It certainly doesn't have to impact your life style to any great extent.

As things progress, if you have any questions, shout them out here and we will help as we can.

Hugs and Merry Christmas to you and yours.

Marie who loves kitties

Same here, perm ostomy since
Same here, perm ostomy since sept of last yr. You'll adapt to it fast, has major advantages besides saving your life. No more running to a toilet/accidents ect. Just try several different brands of supplies and you'll fine which is best for you. I'm sold on the Hollister 2-piece appliances. Closed end when at work (ez to change out)& drainable pouch when at home for a few days.

RickMurtagh

Colon
Loose a colon and poop in a bag. The way I look at it if that is all I have to deal with then things are not so bad. Well, that is not all I have had to deal with, but still things are not so bad. I was playing with my grandson last night and I hardly even worried about him knocking that silly bag off. No really - I can pretty much do all the things I could do before, just with a few more considerations, a bit more planning and some new hygiene routines.

I hope that you can accept your choices and learn to live with your ostomy. I have. It took a while, but I can honestly say I am pretty happy. An ostomy is not the end of the world, giving up is.

Peace,

Rick