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colostomy looming (stage 3 rectal cancer-may 23-for hubby). looking for encouragement, again!

mamalea333's picture
mamalea333
Posts: 27
Joined: Feb 2012

you have all been so helpful so far, and as we get closer to the surgery date of may23, for APR Surgery & perm. colostomy. I am looking for more encouragement about living with a colostomy. so far you have all made us feel like it won't be so bad..my husband sailed through the chemo/rad. (6 weeks) & is not afraid of the surgery...but I am. I just want life to be "ok" again, and I'm afraid of what it will be like after. I know I sound coo-koo, but I just need to hear good things & I know there are so many of you out there who live w/ colostomies.my husband is a very young 46 year old, very young at heart, we enjoy swimming (at our own home) and I'm worried he will feel "funny" about his body afterwards. How do you wrap your mind around the changes in your life? We are very faith filled people, so we will make it through, but hearing from everyone sure helps alot..also curious about irrigation..how does this work out for some of you? can you switch from irrigation to wearing a pouch? or do you have to stick with one particular method? I'm just afraid & will appreciate anything you all have to say..thank you all in advance for responding..i will be reading (i'll stop my 'rant' now!)...also, how long did it take you to be comfortable with the process of everything? He has a great can do attitude about everything, i hope this doesn't throw him for a loop!
thanks,
mamalea333

Lovekitties's picture
Lovekitties
Posts: 3356
Joined: Jan 2010

I recommend the following book:

The Ostomy Book: Living Comfortably with Colostomies, Ileostomies, and Urostomies

Barbara Dorr Mullen and Kerry Anne McGinn RN BSN OCN

It was recommended by my ostomy nurse. It is an excellent source for the person just starting out. It was written by a mother who have an ostomy and her daughter who is an ostomy nurse. You may find it at your library, but definately on Amazon or perhaps at the local book store.

It covers types of ostomies, appliances, irrigation, and life style questions that may come up.

Living well with an ostomy is highly do-able. How long to get comfortable with it varies by person. I found that by the time I was recovered from surgery, I was managing very well.

The ostomy nurse who will do the marking for placement should also be a good resource for anything you or he may be concerned about.

Hope this helps,

Marie who loves kitties

dmj101's picture
dmj101
Posts: 527
Joined: Nov 2011

HI, I had mine done in April of 2011. I was 47.. I have a feeling the younger we are the easier it may be to get used to.. It did take a while to learn how the body works after the surgery.but once you get it down it is pretty easy.
I have a feeling irrigation is not to widely used today..it seems to have gone out of style. but yes you can switch between them from what I have read.. there are some great video on utube regarding the process. my nurse and dr.. don't seem so excited by it so I haven't investigated furter.
The appliances are so easy to use and work with there really should be no issue. And there are many to select from .. I use a Holister 2 piece system. and he will find what works best for him..
Jife will be fine.

dmj101's picture
dmj101
Posts: 527
Joined: Nov 2011

HI, I had mine done in April of 2011. I was 47.. I have a feeling the younger we are the easier it may be to get used to.. It did take a while to learn how the body works after the surgery.but once you get it down it is pretty easy.
I have a feeling irrigation is not to widely used today..it seems to have gone out of style. but yes you can switch between them from what I have read.. there are some great video on utube regarding the process. my nurse and dr.. don't seem so excited by it so I haven't investigated furter.
The appliances are so easy to use and work with there really should be no issue. And there are many to select from .. I use a Holister 2 piece system. and he will find what works best for him..
Jife will be fine.

dmj101's picture
dmj101
Posts: 527
Joined: Nov 2011

HI, I had mine done in April of 2011. I was 47.. I have a feeling the younger we are the easier it may be to get used to.. It did take a while to learn how the body works after the surgery.but once you get it down it is pretty easy.
I have a feeling irrigation is not to widely used today..it seems to have gone out of style. but yes you can switch between them from what I have read.. there are some great video on utube regarding the process. my nurse and dr.. don't seem so excited by it so I haven't investigated furter.
The appliances are so easy to use and work with there really should be no issue. And there are many to select from .. I use a Holister 2 piece system. and he will find what works best for him..
Jife will be fine.

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

My 53 year old husband is stage 4 and had colorectal resection surgery (LAR) last Jan. We knew there was the possibility of a temporary ileostomy before surgery but because of a complication, he had a colostomy. I remember telling him while he was recovering that he had a colostomy. I can't tell you how afraid I was and seeing the swollen stoma for the first time was a bit shocking for me too. I was so worried about how my husband would adjust...would he ever leave the house again and would he be self-conscious?

Well, I can't begin to tell you how smooth it has gone, for both of us. He had a wonderful ostomy nurse that helped us in every way. He tried a few products and found one that he is very happy with. He likes Hollister New Image closed pouch with filter. After a bowel movement, he just takes the pouch off, tosses it, and puts on a new pouch. He changes the wafer every 3-4 days. He has been out and about, gardening, driving, walking the dog, and he has no issue with the colostomy. His surgeon said that 6 months after the surgery, he will re-evaluate, and see if the colostomy can be reversed. My husband has said, that he does not know if he would want it reversed even if it is possible. His quality of life has improved so much after 7 months of living in the bathroom and afraid to leave the house for fear of not being close enough to a bathroom.

He hasn't gone swimming but I hear many people do. He also hasn't tried irrigation yet. I would like him to try but he says he is fine with the bag. He keeps a kit in his truck with his supplies just in case.

So, for us, it all happened so quickly that we really didn't have any time to think about it. Once we got the hang of cutting the wafer to fit the stoma, there has been no looking back. It became a part of life and we have both adjusted to with no qualms.

Take care,

Ellen

KathiM's picture
KathiM
Posts: 8077
Joined: Aug 2005

My first surgeon prepared me for a permanant ostomy...(stage III rectal).

Then, because I was uncomfortable with a man who had to have his nurse read my chart to him (he WAS a bit older *smile*), I checked around for a different gastric surgeon. I found a doctor who is known the world over for his 'low bowel resections'....

I talked with him, and his plan was to avoid an ostomy. Which he was successful at doing.

I had a J-pouch procedure, removal of my rectum and sigmoid colon, and my descending colon transformed into a pouch to act as my 'new' rectum.

I still have some of the same issues as I would have with an ostomy...but none are external, and it's more to do with what I eat and it's effects. I must be cautious of high fiber stuff (the bean family), and I must stay hydrated to 'keep things moving', since one of the main functions of my now-gone sigmoid colon was propulsion to 'push' the waste along.

You are right, tho...there are many others here with all the gear (external pouch) that are truly inspirational in continuing living their lives to the fullest!!!

Hugs, Kathi

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