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to do or not to do? colostomy

AveriRN's picture
AveriRN
Posts: 61
Joined: Aug 2004

Hi to everyone on the board. I have responded to several post on the board in the past but now I need some advice. For those of you who don't know me, I'm a stage 4 with liver mets survivor. I was dx in Nov 03, had colon resection in Dec 03 and first liver resection in Jan 04. Here's my problem (I wonder if I should even be complaining about this as I am ALIVE) with the colon surgery they removed almost entire rectum, all of descending, and most of transverse except what they made a "pouch" out of as a makeshift rectum. I did not have a colostomy at any point. My problem since surgery has been, of course, diarrhea. I have tried everything from diet, to all diff medications w/o relief. I am like a prisoner to a toilet or the house at least. I can't make plans to go eat with my family,go grocery shopping, visit with others, or even start making plans to go back to work for fear I may have an "accident" or something. This has dictated my daily life for over 3 yrs now and I am at the point of considering a colostomy. My doc says that he can do a Loop (temporary) one to see if "resting" the bowel will help. My question is, Have any of you come out of surgery w/o a colostomy and then decided that it was the best option and had one placed afterwards? Alot of people are trying to discourage me (not medical team). All I know is I am tired of being a "prisoner" to this and I want my life back. Thanks for all your help. Sorry for the long post.

Averi

lynn1222
Posts: 105
Joined: Nov 2006

hello my friend, i am so sorry to hear that you are going through this kind of decision, im not sure how much help i can be though, i came out of surgery with a permenant colostomy, they had talked about reattachement for me, however they did warn that i may have bowel incontinence, due to the muscle not being as strong as it once was. i am a stage 4 rectal cancer survivor, had surgery in june of 2005, went into remission in march of 2006. i feel blessed to be one of the ones who have made it. i cant help with the decision you must make, however, i can tell you some of the downfalls to a colostomy and some of the benefits. the supplies are costly, there is no control over your bowel movements, clothes dont fit how you want them to due to having to buy a size bigger to accomidate the colostomy, you have no control over the smell,as the products out there just dont work like they say they do. a huge benifit though is that you are not a prisoner to the toilet, and you can still go out and do things with your friends and family. as much as i didnt want it, i think i made the right decision because i can do just about everything i was doing before this nightmare all started. you also can bowel train yourself so that you can choose when your bowels move each day. i hope i have helped even if just a little. take care and ill be praying for you

lynn

nanuk's picture
nanuk
Posts: 1363
Joined: Dec 2003

I have to answer no to your questions, and so far as Averi's negative aspects, I've never encountered those problems, and know several semi-colons who have opted for the colostomy and are thankful they did. So far as cost are concerned, insurance usually covers the cost of appliances, and mine has been virtually trouble free for 5 years. Bud

taraHK
Posts: 1961
Joined: Aug 2003

I am in a different situation than you -- I had a permanent colostomy at the time of my initial surgery. I do know of a few others who were in your situation, decided to have a colostomy, and were happy with the decision. But I shd let them speak for themselves. It is a very individual decision, and not an easy one. I'll just say that I have found having a colostomy to be "no big deal", at least after the initial adjustment. I am certainly not a slave to the toilet. I work, swim, hike, jacuzzi -- anything I want. Unlike Lynn, I haven't needed clothes a size larger (although I do have to avoid very 'slinky' fabrics on my belly -- not a big sacrifice at 48!) and have had no problem whatsoever with smell (and my family promised not to lie!). It did take me a while to try out different products to find the one(s) that worked best for me. I'm also very fortunate in that I am able to 'irrigate' (even after radiation for rectal cancer). That means I have no output other than when I irrigate, and am able to wear a very small, unobtrusive appliance. Happy to answer any questions you might have (feel free to email me directly via this site). I wish you all the best with the decision you face.

Moesimo's picture
Moesimo
Posts: 1080
Joined: Aug 2003

I have two words to say. DO IT!!!

I had stage 3 rectal cancer diagnosed on 3/17/03. I had chemoradiation followed by a low anterior resection with a temporary ileostomy. I had all fo my rectal tissue removed. Eight weeks later I had the ileostomy reversed because I couldn't wait to get rid of the BAG. I remember saying I don't care if I have to go to the bathroom 100 times a day. Well that got old quick. I was going 30 - 50 times a day. My bottom was alweays in pain. I spent about 3 hours a day in the tub. I had to take narcotic pain meds ti be able to function. I worked full time as nurse but had occasional accidents at work and spent way too much time in the bathroom. As a nurse that has always been my biggest fear. One of my first patients had a colostomy. I had nightmares for months.

18 months after my reversal I had a colostomy done. I haven't looked back. I am happy with my decision. It has been an adjustment, but I have my life back. My surgeon told me there was a piece of bowel that looked like it wasn'r getting good blood flow and maybe that is why I had so many problems. Her even asked me if I wanted to try a reversal again. I have opted to keep the ostomy because there is no guarantee that I will have control over the bowel movents.

Supplies are costly, but my insurance pays 100% with no deductable. I order on line and they are delivered to my door. I am irrigating now, I still have to empty sometimes, but I decide where and when. And my bottom no longer hurts and I no longer need pain meds.

I am going to NYC this w/e with girlfriends to celebrate my 50th birthday. They all know I have the ostomy, so that shouldn't be an issue.

I am also happy to be alive and remain NED since my first surgery.

Please feel free to email me through this site.

Maureen

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

Dx in July 06 and have a temp colostomy which should be reversed sometime in Feb 07. It took awhile to get used to, but after the initial shock, it does not bother me, except that the the supplies are costly. I pay upfront and my insurance company reimburses me. Usually takes a month.

Have you tried the BRAT diet for your loose bowels? B=Bananna, R=Rice, A=Applesauce and T=White Toast. Also chicken noodle soup.

Monicaemilia's picture
Monicaemilia
Posts: 455
Joined: Nov 2006

Hi Averi: I've had an iliestomy since Jan. 06 (with possibility of reversal). I'll be honest with you, at the beginning I was upset, but now, when I thought of the possibility of reversal after hearing the many stories of how you do become a slave to your toilet (been there, done that prior to dx), I am debating whether to even reverse. I think I have gotten attached to my bag (LOL). I have had no problems, and as far as my GI tract is concerned, have never felt better. Don't listen to anyone, including me. Weigh the pros and cons for you, and decide what is best for you. You have beat the beast into submission, now it is time to live. Maybe a temp loop can help you make the decision. Monica

AveriRN's picture
AveriRN
Posts: 61
Joined: Aug 2004

Thank you all for the input. I will keep you all posted on my decision. I am due to go Thursday for flex sig. and anal ultrasound to see if there is anything physical causing the problems. I, too, have had issues with control. And I guess that has been my biggest issue more than the # of times I am going but as moesimo said I have been so many times in a day and the skin just becomes so raw it's unbearable. I am a nurse also and the issues of "control" have to be resolved before I can even begin to think of going back to work. Take care all and thanks again.

Averi

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