One patient with glioblastoma still alive nine years later
by Super01Mom on Sun Jan 10, 2010 10:04 AM
I had my LAR in June 2008, did not need a colostomy or an ilostomy at that point until 10 days post op with complications my entire surgery came apart, so I was rushed back into surgery which ended with a rectal/vaginal fistula and a colostomy. I am finally having repair surgery on the fistula but I have been told that the colostomy cannot be reversed because of a surgeon gone a muck, that is mildly explaining it. Anyway....I just can't get use to this bag. I don't go out of the house more than 2 hours at a time, because of severe diarrhea, which I have been on countless amount of meds and diets to control but another lovely side effect of my botched up surgery. I have leaks with my colostomy wafers, the seal around the bag, I have tried different ones but none seem to work because of the diarrhea, I have 8 to 10 bag changes a day, way too many. I feel like a prisoner to my bathroom, thought the colostomy would take care of that, right? I have to carry a diaper bag with me when I am gone because of leaks. I don't do the things I use to enjoy, like going to a movie with my girls, or dinner with my hubby, because of the leaks, and not to mention the noises that come out of my stoma, that well you just can't control, I feel like a freak. I am always self consience about the smells, and wonder if people know I have a bag. I know it is stupid, I'm alive right, why does this darn bag rule my life, or why more importantly do I allow it to. I am a young person still, only 46, I shouldn't have to feel trapped in my house. I go to therapy to try to help me cope, take anti-depressants but I just want me back. Don't feel sexy anymore, poor hubby, he is so understanding and supportive. I know this is the new me but how do you get use to the new you. Have others had the same feelings like me or am I just being a big baby. I can handle almost anything, dealt with the cancer better than I am with the colostomy. Would love to talk to others and find out what they did to cope. I've gotten use to the maintance part it is just the emotions that go along that I am having a hard time with. Any suggestions would be great, thanks.
by wvdavidleroy on Sun Jan 10, 2010 03:53 PM
takes awhile, i have only an ostomy and that took some getting used to, i know yours would be harder, my dad had one, from my personal experience about all this , it seems you get limited information about the best and different products available that would help, I did alot of research and found supplies that have made all this easier. Holister is really helpful , 888-740-8999 give them a call, also search thru the products on the best buy ostomy site, what i did was look thru all their supplies, then call Holister and ask questions about them, they will send you free samples of most products they have to see if they work right for you, new stuff every day comes out, hang in there, lots worse things in life to deal with Dave
by wvdavidleroy on Mon Jan 11, 2010 01:22 AM
thought a little more about this all, they really do not fit you with the best supplies to start you with,they did not me anyhow, seems they give you equipment like hospital gowns, one size fits all, and not much information or training, i had hell with leakage at first also, one reason was from buying supplies at local medical companies, supplies where old, buying on line solved that, also different kinds of paste and barrier rings did away with my leakage problems. One example of what i experienced was they started me out with 4 inch skin barriers with 2 and 1/2 inch flange, that is because that would fit any kind of stoma or type of urostomy problem a patient would have, little research i found i could use a 2 inch skin barrier ans a 1 and 1/2 inch flange, much more comfortable all the way around. So don't give up, research some, call Hollister as i posted before, i would give you a hug if i could, know you must be having hell, i hope this helps you in some way
by Super01Mom on Mon Jan 11, 2010 01:46 AM
Thanks for the info, I will give them a call and see if we can come up with some kind of product that best suits my needs. I know a lot of us have the same problem with products, looks like in this day and age they could come up with better solutions. I have talked to people in different countries that have far worse problems than we do. Some folks can't even get products in the low income areas of the world , don't know what they do, so I should be grateful, which I am just frustrated. Thanks for the kind words and I felt the hug. Take care .
by nvrimgnd on Mon Jan 11, 2010 02:23 AM
Sent you a p/m
by gbmwife on Thu Jan 14, 2010 02:02 AM
Not only call Hollister or any other manufacturer and at the medical supply stores they sometimes have ostomy specialists. The hospital may have one too. You just have to find the products that work for you and bring extras when you go out along with baby wipes for cleanup. Do you have dainable bags? Seems to me that your cholostomy is acting more like an illeostomy, so look at those supplies.
I have crohn's disease and I had iliostomy 32 years ago, 6 months after getting married. I had 2 kids and have camped and climbed mountains and worked a fulltime job and done many stupid things but have made it through.
I'm on Cancer Compass because my husband died of brain cancer.
Go and enjoy yourself. make the doctors staff help you find help.
by Farokh on Thu Jan 14, 2010 04:39 PM
You change how many bags? No wonder you are not happy. How come you have diarrhea? Not that it does not happen when you are taking chemo, but I was told to take something like Immodium that stops the diarrhea cold within 24 hours. Having to deal with that as long as you have to is unpleasant.
I had a colostomy about four months ago. The bag is the least of my issues. It leaked at first, but we solved that pretty quickly.
I use Hollister products. I tried some of the others but ran into issues. I also use something called Cavilon from 3M. It cleans the area around the stoma to prevent a rash from taking place. The thin layer that of whatever solution it places around the stoma seems to help create a better seal. I stopped using rings because they pushed the flange up too high creating leaks. Instead, I use something called Stomahesive from Convatec. Original name or what??? It takes a bit of getting used to. It is very sticky and difficult to spread properly. It sticks to anything it touches. Yuck.
I stopped using the bags that reseal, opting instead for the disposable ones. I wash them out. They last about four days.
At nights, I wear these things made for pregnant women. http://www.motherhoodcanada.ca/maternity/secret-fit-belly.as Secret-fit covers my bag and prevents it from coming off at nights. I had two of those accidents.
I tell people I have a bag. Most people are curious about the workings of it. I show them the bag. Takes all the unpleasantness out of it. I was also concerned about the abundant sound effects. Someone told me it sounded like a rude ringtone on a cell phone. Hah! My concerns vanished when a 12 year old nephew started laughing at the sound effects. I had no choice but to laugh with him. Really, it is funny. Who thought about this contraption anyways? Sheer genius.
I also keep a blog which reveals all. http://ihavecancer.ca
by wvdavidleroy on Thu Jan 14, 2010 10:47 PM
hey i just found the neatest thing, it is an Ostomy Belt, i didn't keep the site sorry, but just type that in the browser, is a company in California selling them, ahhhhh UOAA think thats all you type, i had been thinking about making my own and thought maybe i had come up with a great idea, womans husband beat me to it, they are 55 dollars but man, i cannot not wait to get this, take me a few months to come up with the money but be money well spent, i will be usefull and open up another window and post the site of it , http://www.ostomysolutions.com/HowItWorks.html there, this will make life so much better, and hey i am not a salesman, a cancer patient looking for better ways to live and this for sure has to help
by wvdavidleroy on Thu Jan 14, 2010 10:50 PM
http://www.ostomysolutions.com/HowItWorks.html maybe it will work, whats up with this site anyhow, let idiots post sites against chemo and stuff, you try and really do something it doesn't work, sick old ornery man and i complain alot, what can i say?
by wvdavidleroy on Thu Jan 14, 2010 10:51 PM
argggggg , just type Ostomy belt!!!! i gave up on putting the site here
When you track a discussion, you will get notified by e-mail if anyone else posts a new message on this discussion. Are you sure you want to track this discussion?
If you stop tracking this discussion, you will no longer get notified by e-mail if anyone else posts a new message on this discussion. Are you sure you want to stop tracking this discussion?
If you were considering traveling for cancer treatment, which headline would you find more interesting?
Destination: HOPE. Cancer care that is worth the trip.
Over 84% of our patients travel to our hospital from another state
Neither headline is interesting
We care about your feedback. Let us know how we can improve your CancerCompass experience.