7 replies to this topic

[scott73]

I'm 23 years post injury. I'm a C6-7 incomplete quad. I always have been active and my left hand works pretty good. Good enough to have been doing my own bowel program all these years. I take two perdiem pills at lunch, insert one magic bullet around 8pm and do digital stimulation as needed until I feel I am finished. I do this every third day. I have to admit that I was fortunate not to have toooooo much trouble and accidents are not frequent. It does however, sort of rule my life. I ALWAYS have to plan events around my schedule. I do have to miss things because I don't want to "adjust" my schedule cause it gets off track. My hemmoroids are bad at times and bleed. I miss so much being able to just up and go without worrying about having an accessible damn bathroom, carrying around a toilet seat, and having privacy for a couple of hours. Then worrying about accidents away from home. My little boy is almost 5 and I want to beable to do things like go on hunting or fishing trips just me and him. Maybe go on a camping trip together. This will almost be impossible having a bowel program. My top concerns are:

1. Does it make noise alot? I'm a home designer and have meetings with clients.
2. Does it have noticable smells? and can that be prevented?
3. I wear jeans and have to pull my pants up alot. Will jeans interfere with it?
4. How do you take a shower with it?
5. Does laying in bed cause it to leak and can you sleep on your side or only on your back?

I know I could change the bags myself so this would give me so much more freedom. Could you guys offer advice, thoughts, or answer some of my concerns? Thank you so much!

[Ohiokitten4]

Hi Scott,

I have been in a chair now for 26 years. OMG I wish I had this colostomy done many years ago. This operation has changed my life a ton! I can go now and not even think twice about the worry of what if I have an accident. I had my surgery on September 8th of this year, and I havent really had any problems. However, when I did the prep the night before, because my system was so out of whack, apparently I was not completely cleaned out according to the doctor. So just last week 5 weeks after surgery I did have a major blow out from the regular way. i called the doctor and he told me that he doesnt expect that to happen any more, and yes it was possible for that to be there and eventually it came out. I have been trying to do my work outs on my stomach alot since surgery and I think all that movement is what finally brought it all down. It was unfortunate to have it happen, thank goodness I was at home at the time. But for me, I have been very happy with the decision I made to get this done.

OK to answer your questions. Does the shower bother it, for me no, however I was given some samples of some barrier rings and wafers, and the one sample one I had I didnt care for as after I showered the water had made it very slimy and it did start to peel up, so I wll not use that kind anymore. I have an allergy to adhesive tape so I have to watch what kind of wafer I use. I have found that the one I am using now is working very well.., I change my bags about evey 2 or 3 days depending on how they look. I rinse my bags after I go, by pouring in a cup of luke warm water, kinda shake the bag a little bit then pour it out and when it is all clean, I add a odor liquid to it and have not had any smells at all.

As for sleeping, I am a back sleeper, and I sleep in a watebed so I dont have to worry about sores. I dont think that laying on the side would bother is much, maybe put a pillow or a rolled up towel in between yourself and the bed to kind of prop the bag so you arent directly on it, but then too... after you have your system knowing when to go, you usually dont go too much during the night time.

As far as noises go, well..lol... that all depends on what you eat. I noticed that after eating something like chili, it did tend to constipate me quite a bit, so I will watch when eating things of a high fiber content. I wouldnt worry too much about the noises, everyone poops and everyone passes gas, only ours will be in a bag. and yes the bag does inflate with air. They do have bags with a charcoal filter on them, but I found that when I would rinse the bags out, that when water hits the filter, it makes it useless. So I have gone to the bags without the filter, and when it fills with air, I just go and let it out, and carry on with life.

I wear jeans and dont have a problem with the bag, I like to wear my bag to the side so it is horizontal across my stomach, otherwise where they put my stoma, it would make the bag hang between my crotch and I dont like how that looks, just my personal preference.

So since I rinse my bags out, I just carry a backpack with me, and a large cup so I can pour water into it to rinse it out. I have bags that are disposable as well, in the event that I am out and cannot rinse, you just pop it off the wafer and pop on a new one and go on with life. I know some people hate having the stoma, but I have had one for years now for my urine so I actually wear 2 bags. But I look at it this way, I am living my life now and to hell with anyone who doesnt like the bag. I know you will wonder now about intimate moments, Ok well for that I just lay a towel over the top of the bag and not worry about it. If your partner knows about the bags and your condition, dont let anything get in your way. I hope that I was able to answer your questions, feel free to ask me anything if I can help I will surely try my best to do so. Good Luck!~

[Thedee29]

I am 38 years post injury. I had a colostomy done 2 years ago. My bowel program had gotten to the point where it completely dominated my life. There have been bumps in my colostomy journey, but my only regret is that I waited so long before finally doing it.

I wear a 2 piece colostomy appliance. That means I have a wafer attached to my skin and a bag attached to the wafer. I typically empty the bag once or twice a day (takes a couple of minutes at most) and put a new bag on daily which also takes a couple of minutes. I change my wafer every 4 days or so. That takes 5-10 minutes. That's it for my "new" bowel program.

Q1- my stoma can definitely make noise. In fact sometimes it appears to have a mind of it's own. It has always been manageable for me. In addition, the noise comes from your stomach area which typically confuses most folks. Plus, with the new bag filters there is no odor, unless you want to "vent" the bag.

Q2- the smells can be easily and effectively managed.

Q3- I don't think you will have any interference. You do want to take some care to ensure you don't pull the bag off, though.

Q4- I pay no attention to my wafer/bag when I take a shower. I dry it all off when I get out. I swim regularly and have been SCUBA diving as well since my colostomy.

Q5- sleeping on your back or side won't be a problem. I've heard mixed opinions on sleeping on your stomach.

United Ostomy Associations of America ( ostomy.org) has a very active forum where you can learn all sorts of information.

Good luck with your decision.

Linda

[Illinois Boy]

If you don't need it, don't get it.....

I hate mine.....

Jim

[scaldedcat]

Thank you to OhioKitten4 and Thedee29 for the useful information on colostomies. As another that is in the process of speaking with surgeon regarding the operation, it is very helpful to get as much information as possible.

It is a pity that people who ask for information on a particular topic and are then provided with it, don't even take the time to acknowledge the people who have assisted them. If you are going to ask for help, at least have the decency to reply to the person providing the information.

Edited by scaldedcat, 31 October 2011 - 04:15 AM.

[scott73]

Thanks guys for your replies. I was waiting for multiple answers b4 getting back. I talked to my Dr. today and I'm still in the decision process. I was on the toilet for 4 hours the other nite. I was tired and finally got off. Went take a shower and finally got to bed. Not 5 minutes later I had an accident. It's times like that, that makes me think a colostomy can't possibly be worse than that. Illinois boy, how long have you been paralyzed? How long did you do bowel programs B4 getting a colostomy? After doing bowel programs for 23 years, I may love it. Now if I had got one right after being hurt, I may have hated it, not knowing just how long bowel programs are and how messy accidents are. Another thing, it hurts me so much to see my wife have to help clean the mess up. She doesn't mind but I do. I'm really giving this some thought. Probably make a decision next year. Every football game, supper, vacation trip, outing, etc.... that I miss is making me lean toward doing it. Thanks guys!

[Illinois Boy]

scott73, on 03 November 2011 - 09:41 PM, said:

Thanks guys for your replies. I was waiting for multiple answers b4 getting back. I talked to my Dr. today and I'm still in the decision process. I was on the toilet for 4 hours the other nite. I was tired and finally got off. Went take a shower and finally got to bed. Not 5 minutes later I had an accident. It's times like that, that makes me think a colostomy can't possibly be worse than that. Illinois boy, how long have you been paralyzed? How long did you do bowel programs B4 getting a colostomy? After doing bowel programs for 23 years, I may love it. Now if I had got one right after being hurt, I may have hated it, not knowing just how long bowel programs are and how messy accidents are. Another thing, it hurts me so much to see my wife have to help clean the mess up. She doesn't mind but I do. I'm really giving this some thought. Probably make a decision next year. Every football game, supper, vacation trip, outing, etc.... that I miss is making me lean toward doing it. Thanks guys!

I was doing a bowel program from 1982 - 2001, I just don't like the hole in my tummy....
If you don't mind that and the damn thing filling up sometimes under a t-shirt when friends are around,
go for it.. Mine was only 3 tiny insisions.......

Jim

[allis53ca]

6 years w/colost...NEVER one minute sorry