Researchers still found 'excellent' survival rates for both primary, secondary disease
by DinaZ on Thu Aug 07, 2008 12:00 AM
Does anyone have any tips on this that I can pass along to my Dad? We are going on a little family vacation inbetween his short treatment and his long treatment to a lake in upper Michigan. I know that he would love to get in the water, but I know that he does not feel comfortable because first off, he thinks that the water will loosen the seal around his colostomy bag and secondly, he is self conscience about exposing that bag to the world.
Any information at all would be appreciated! We leave Wednesday!
by BarbInTexas on Thu Aug 07, 2008 12:00 AM
Just this min. finished writing this on another post, so will copy and add to it for your dad . . . great timing!
YES, there IS life after a colostomy! No need to forgo a great swim on vacation unless you dislike water and that is your only excuse.
I swim laps, walk, used to sail but can't tolerate heat now.(and lastweekend was 107 here!) but do pretty much anything I want given lack ofenergy now from CFS, Chronic Fatigue Syndrome. I do reinforce the pouchwith picture-framing (using tape to make a box around the flange of thepouch where it meets the skin) when swimming or hot tubbing (tepid tub in summer), and thathelps keep things tight.
Use waterproof tape on clean dry skin. I use 2", and overlap all edges, bending back about 1/4" on itself to make what i call a 'courtesy tab' at the end to facilitate removal later. Skin MUST BE clean and dry to adhere well. I've been known to stay in the hot tub set at 102 for 2 hours, with a glass of wine and a friend, but I don't like stroke range of 104-106 like some do. 10-15 min. is max for that, I don't do it.
I've also ridden bikes, chased the dog, jogged,etc. etc. No problem as long as the seal is tight. Everyone hasa funny story of what happens when you don't check this, we've allneglected to double-check in the first months and got a surprise, so dowhat I say, not what I did! ;-)
I dislike the velcro roll fasteners on some pouches and always back them up with a hard curved clip provided by suppliers. The peace of mind is well worth it. I've had gas pop open the velcro before, (!!) so vent regularly if that's a problem and never allow the pouch to get more than 1/3-1/2 full.
Save those clips, they are $3-5 if purchased separately. A rip-off.
Modern pouches are a far cryfrom years ago, quiet, odorless, mostly comfortable, invisible under clothing.I travel occasionally and the main issue is finding clean restrooms. I carrysupplies but use cheaper disposables when on the road, much easier thancleaning and re-using. I wear double cotton or micro fiber underwear, one under, one over, tokeep the plastic from my skin, esp. in hot weather.
Your Dad might want to contain his pouch under swim trunks with a pr. of easy-dry micro undies for comfort so it's not flapping about. Today's baggier longer swim shorts are IDEAL for him. Speedos are prob. not a good idea, but at his age, that prob. could go unsaid. Sorry.
Water forcleaning the pouch must be potable, the same safe level as you'redrinking. Yes, it's a pain dealing with it, but it beat the alternativein my case, anyway. I was given 6 wks. if I did nothing.
He might want to avoid gas-producing foods on swim days, and maybe the night before, and don't go too long without eating, as that, too, produces gas! (was news to me) I don'toverdo on salads or fiber, but enough to keep things regular. Drinking water isMOST important, that and not lifting too much. One can get a herniafrom slinging furniture around (as in the olden days, ask me how Iknow!) but common sense is good to have in this case. I just alwayspush and try to do too much in the mistaken belief that I can get myformer energy back.
I've gone on to have two other kinds ofcancer, skin and breast, but the colostomy is mine to keep forever andso far I'm doing well with it at age 63, so there is hope for your Dad.
Enjoy your vacation!
by Debbie2 on Fri Aug 08, 2008 12:00 AM
try Pink Tape (that is is name) you can get it at your ostomy supply place. My husband used it and it really worked.
have a fun vacation- make lots of good memories
by DinaZ on Fri Aug 08, 2008 12:00 AM
by bellaG on Tue Aug 12, 2008 12:00 AM
Wear a nylon swim shirt (rash guard). Can find at sporting goods stores.
by Heather70 on Thu Sep 04, 2008 12:00 AM
I’m a journalist and I’m writing an article for Curemagazine on colorectal cancer. Part of the article deals with changes in diet,bowel function (including life with a colostomy bag) after surgery and how thesechanges impact your life and that of your family (spouse, children, etc). I sawyour posting and thought you had some really fantastic advice! – I think yourstory would really benefit the Cure readers. I am writing to ask you whetheryou would be willing to chat with me for the article and reflect on some ofthese issues. The only catch is that Cure’s policy is to use patient’s fullnames so it would be best if we could chat by phone (I would send you a releaseform later). Please let me know if you would be interested in participating (I’mhoping you will check this site as my deadline is in 2 days!) – I’m happy toanswer any questions you might have before you decide. You can reach me byemail at
and we can set up a time to talk (tomorrow, 9/5, would be best).
Thanks in advance!
by BarbInTexas on Fri Sep 05, 2008 12:00 AM
I just responded to Heather in private but do want you all to know I'm ALWAYS willing to ans. any questions, just wish I'd had someone my age to ans. things when I had my surgery. I was 42, divorced, dating, and scared spitless at the time. The Ostomy Club at the hospital was composed of people in their mid-60's thru 80's at that time, and I was really really really uncomfortable discussing dating and other issues there, so pretty much 'went it alone' for several years. They were all long-married and not of my generation.
And did I say I was uncomfortalbe discussing dating with them?!?! haha
Now I'm 63, remarried for 9 years now after having 3 rather long-term relationships during my 18 years of single-by-choice/post-divorce life, and will do anything to prevent others from feeling like they are alone in this. I am here to say there IS life after children (I had two boys, now grown) and there IS life after divorce, (that happened several years before any cancer) and there is plenty of life after both colo-rectal cancer/colostomy and also after breast cancer.
I was raised by an R.N. and do not embarrass easily (didn't I say I raised two boys?!?!) so if I can help, let me know. I'm not an expert by any means, only know what I personally know or have learned from others, but it took awhile to get used to this life and actually learn to thrive. One does not have to be depressed or as restricted as much as you would think.
I once SWORE I'd never have a colostomy, but came about after a week or so of thinking of all I would have to say goodbye to, changed my mind, and have had 20 years of ups and downs that I would have never known otherwise.
Oh, and Pink Tape will show thru some clothing, so I usually use clear. I'm also thinking my skin might have reacted to it, in the past, but I use paper tape or none if planning to stay dry and TRUST that company's products, or use clear waterproof if swimming or hot tubbing or have some company where the stick-um can't stand up to our heat in Texas or my activity causes a 'parting-of-the-ways'. (not a good thing, Martha)
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