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Abdominoperineal Resection

JJeanette
Posts: 2
Joined: May 2007

Hi,
I have a T2 rectal cancer that is being removed later this month. I'm having this rather radical procedure not only because the cancer is very low, but because, having HNPCC there is quite a good chance of it coming back. Well, it can't come back is there is nowhere for it to live. ( yes, I'm in denial about Mets )
I have no problems whatsoever with the idea of having a permenant stoma, it's a small price to pay for my life.
I'd like to hear about other peoples experiences with this procedure.
Particularly from a womans point of view.
Thanks,
Jeanette

nudgie's picture
nudgie
Posts: 1483
Joined: Sep 2006

I had a temporary colostomy which was reversed in Feb 07. It did bother me at first, but I got used to it. I was lucky that my insurance covered the cost of supplies, bags, flanges, etc. I had to purchase looser pants because my stoma was exactly where jeans and paints would come to. I enjoyed getting new clothes.

Remember to keep the area clean as possible. I had to use a Zinc-Oxcide (sp?) lotion around the skin area around the stoma becuase of getting little red bumps which were normal.

I hope this helps.

vinny3's picture
vinny3
Posts: 933
Joined: Jun 2006

Hi Jeanette, I can't give you a woman's view but did have the same surgery. Having been in medicine for many years I had always heard, and had a few patients-years ago- that it was a very severe and almost disabling operation. Thus I had alot of anxiety before the procedure 15 months ago. I found that the actual surgery and recovery from it were not that bad. They get you up to walk right away and while there is soreness it is a very important part of the recovery process. I like music with a beat so brought an Ipod to the hospital and walked up and down the halls to music. It helped alot and mentally made me feel better.

The initial response I had to the colostomy was "how am I going to deal with this the rest of my life?". At first, they use a clear pouch and that is sort of depressing. As soon as you can it is helpful to switch to an opaque pouch. Having a good ostomy nurse is very important as well. It didn't take long to adjust to taking care of the pouch and now it is just another thing like brushing and flossing. I have not changed the way I dress but have had to make a few adjustments. If you do much in the way of lifting it would pay to get a hernia belt as soon as your stoma is a stable size. Having a hole cut through the abdominal muscles makes you susceptible to getting a hernia at that spot. I found that being limited to lifting 10 lbs or so the rest of my life was not going to work and did develop the hernia. At some point I may have surgery for it but in the meantime I wear a belt to help lessen the effect. You will also want to always have an extra pouch and supplies with you. I think, at some point or another, most people will have an episode where you start to lose the seal and the pouch starts to come loose. It is very frightening the first time especially if you are not prepared for it. Some people do irrigation daily and are able not to have to wear a pouch but just have a cover. I'm sure you will get more information on that here and on the ostomy websites.

At this point I really do all the activities I did before. Stay positive. You will do well with your surgery.

Dick

colonstageIIIc's picture
colonstageIIIc
Posts: 17
Joined: Nov 2006

I had an ostomy surgery in Oct when they discovered cancer. I will be having a reconstruction surgery in November.

I am handling the stoma ok. I read the other responses and you may have to go to a larger size pants, as I did. I have gone back to work and have experiences with gas noises. By holding your hand over it, it quiets the noise somewhat. I have been honest with my co-workers and named the stoma Charlie and just say that it is Charlie making noises.

Good luck and my prayers are with you.

kathleenss's picture
kathleenss
Posts: 49
Joined: Nov 2006

I had an laporoscopic abdominoperineal resection the end of November. They loosened everything up laporoscopically, then removed it from the incision below. I was in the hospital for a week. I had the services of a home healthcare nurse twice a week for a little over a month to help me learn to take care of the colonostomy.

I went back to work part-time after a month and worked up to full time as I felt like it.

I lost the bag once at home during the Christmas holidays (cried like a baby) and twice after I went to work (where I handled it fine.) I live near home, so I just went home to change. If I didn't live near work, I might keep a change of clothes handy at work, just in case.

Now that I've learned to take care of things, it is just another form of normal. Sometimes it makes rude noises, and sometimes it makes rude odors, but nothing traumatic. I have already had 9 every-other-week chemo sessions out of the 12 the doctor wants to do. Chemo does stir things up a bit, so I swing from one extreme to the other in my toilet habits.

I was completely honest at work about what was going on, and they have been understanding and supportive. I was complaining about the odors to a coworker this week, and she confided that she had the same problem without a colonostomy!

The soreness on my bottom took a little while to go away, but go away it did. I haven't changed my clothing size, but finding underwear that doesn't cut across the stoma is difficult. You have to have some with the waistline at or above your waist level. I have found that some lycra or light stretchiness helps. My home healthcare nurse suggested taking very lightweight girdles and cutting an opening over the stoma large enough to pull the pouch through and using an overcast stitch to keep it from raveling would help support the abdominal muscles. It's comfy, but a pain in the bathroom, and the pouch could use a covering, because it isn't really pretty, but that's just the girly girl in me talking.

Follow all their instructions in the hospital, especially about diet, walking, and lifting. I'll remember you in my prayers. Let me know how you do.

vinny3's picture
vinny3
Posts: 933
Joined: Jun 2006

I started using the Adapt Lubricating Deodorant (which comes in packets) and some M9 odor eliminator drops (comes in 1 oz bottles for when you are out and 8 oz at home) with each emptying of the pouch and it has really taken care of the odor. In fact if I do notice any odor it is usually a sign that the pouch is coming loose-fortunately hasn't happened much EXCEPT 3 times while on vacation.

Dick

ladybugg
Posts: 20
Joined: Feb 2007

I have had a temporary ileostomy and now I have a permanent ileostomy I have had it for a year. It takes getting to know it mine stays pretty watery. I had my whole large intestine taken out in 1/05 and we made the ileostomy mine in 5/06. I want to name mine but the only name that seems to fit is "destiny". Because for me thats what it is. I hated getting rid of my jeans but the stoma is my waist. I don't mind it so much now because I wear capris and they are elastic waist. If you have anymore questions I would be glad to try and help. Just be thankful you are alive, I hear that everyday. I have had such a ride the past almost 3 years.
Jackie

taraHK
Posts: 1961
Joined: Aug 2003

I had an abdominalperineal resection in 2003 for a very low rectal tumour. As Vinny said, it is 'radical' surgery -- but I didn't find it too bad. Make sure you have good pain relief, and get up and walking as soon as you are able -- and I advise walking when you get home. I was home in 7 days, walking around the track the day I got home.

Yes, a permanent colostomy is a major life change. But, you will adjust and, as Vinny says, soon managing becomes something very routine. I have had mine for over 4 years now. I can wear virtually everything I wore before. I swim, hike, can go in a hot tub. There's a wonderful website called something like Shaz's ostomy site (sorry I don't have the URL to hand but you can probably google). also the united colosomy assocation. I am one of those people who chose to and am able to irrigate. It's great if you can do it but not everyone can esp if you have had radiation (mind you, I had radiation, and I can do it fine). Please feel free to email me directly (via this site) if I can answer any specific quesitons --. Thinking of you.

JJeanette
Posts: 2
Joined: May 2007

Thankyou everyone for sharing your experiences.
I've always said that I like to take life in great big chunks. While I won't say that I will enjoy this particular chunk, I will certainly embrace it and make the very most of this experience.
Cheers,
Jeanette

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