[blckchns]

I'm sure most of us have wore them at some point in our lives, but do you still wear them?

I've got my bowel management under control and I usually catch my condom cath before it slips off. Just when I think about not wearing them anymore, something happens. Like today when I had an freakish accident at work, I can only imagine how big of a mess it could've been if I wasn't wearing them. Anyway, I'm just looking for suggestions. Thanks.

[Apparelyzed]

I've never worn them, and have never known anyone at my Spinal Unit who wears them either.

As long as the correct convene is worn, this shouldn't be a problem, although blowouts do happen due to "kinking" of the convene.

Simon

[juls]

If i have a uti i'll wear a pad (to much info??) because your bladder seems to be all over the place when you have an infection but otherwise i wear nothing. It does take time for everything to get into a trained routine though and unfortunately having 'accidents' are part of having a sci.

[Damaged Goods]

Hey. I have to admit that, second to the nightmare chronic pain issue that a lot of us suffer due to an SCI, I HATE the side-effect of incontinents. No matter how much or how little fluid I drink, my bladder will spasm or whatever, whenever it feels like it. There is no rhyme or reason to it. As well, no matter if I self-cath every 2, 4 or 6 hours, there is no guarantee I will stay dry. ... again, even if I try self-cathing every 2 hrs. and have not had a drop to drink, I've still suffered 'accidents.' I've tried all bladder incontinent RXs and NOTHING works. I refuse to have the surgery where there ends up being a 'collection' bag tied to my leg, for I am too active and to 'vain'? to have to add that to my list of depressing issues. Sorry to rant, but it's so Friggen frustrating. If it's not apparent in this post, I'm a female ( 30 yrs young )... fyi. So, until they find something actually useful that can guarantee I'm not going to have an 'accident,' I'm stuck w/ wearing maxi-pads & making the not-so-healthy choice of drinking very little water. I'm too embarrassed to even type what I have to wear at night or during a long flight...... grrrrrrr.

I've read they are doing some research studies where they inject the bladder w/ botox, to help reduce the spasms... I wish I could sign up for this study. I'm so desperate at this point..... ugh! It really pisses me off! "lol"

[cvelusc]

Damaged Goods, on Oct 2 2006, 12:45 AM, said:

[snip]
I've read they are doing some research studies where they inject the bladder w/ botox, to help reduce the spasms... I wish I could sign up for this study. I'm so desperate at this point..... ugh! It really pisses me off! "lol"

Hi DG. I wish I could help you some way. I decided to check out the Clinical Trials government and searched by "bladder spinal cord injury" for you. I'm not sure there's anything that will be of use, but please take a look if you haven't already.

I don't know exactly where you live (i.e., I know of many forests/mountains ) so the Clinical Trials site may/may not be useful for you.

[coolparaguy]

I've never worn it before. I don't think I ever want to. Even the leg bag thing and the condom cath is already a big ebarrasment for me, I don't think I could handle the embarrasment associated with wearing diapers. I just cath myself ever few hours or so and take Detrol La to stop the bladder spasm, no more leg bags and condom cath, yay!. So far, I'm very pleased with the results.

[juls]

coolparaguy, on Oct 2 2006, 09:41 AM, said:

I've never worn it before. I don't think I ever want to. Even the leg bag thing and the condom cath is already a big ebarrasment for me, I don't think I could handle the embarrasment associated with wearing diapers. I just cath myself ever few hours or so and take Detrol La to stop the bladder spasm, no more leg bags and condom cath, yay!. So far, I'm very pleased with the results.

Hi coolparaguy,

Would you mind telling me what Detrol La is? my internet is playing up and i can't seem to google anything, otherwise i would look it up!!

[coolparaguy]

juls, on Oct 1 2006, 07:56 PM, said:

coolparaguy, on Oct 2 2006, 09:41 AM, said:

I've never worn it before. I don't think I ever want to. Even the leg bag thing and the condom cath is already a big ebarrasment for me, I don't think I could handle the embarrasment associated with wearing diapers. I just cath myself ever few hours or so and take Detrol La to stop the bladder spasm, no more leg bags and condom cath, yay!. So far, I'm very pleased with the results.

Hi coolparaguy,

Would you mind telling me what Detrol La is? my internet is playing up and i can't seem to google anything, otherwise i would look it up!!

Detrol LA is a medication for people with overactive bladders, but it works for people with SCI too. What it does is reduce bladder spasms so you can stay dry longer. Without Detrol LA, my bladder empties itself (not completely) every 1.5 hour or so. With Detrol, I can stay dry up t0 3-5 hours. However, it doesn't work for everyone. Talk to your doc and try it out. If it works, it will improve your quality of life alot. It did for me

[juls]

Thanks very much it's actually not for me, my bladder is really good and i'm able to go 7hrs without a wee which is how they trained it to be at rehab..unless i have a uti
My friend who is a little higher then me has a really sensative bladder and the smallest bumps or pressure on her lower tummy sets her off, she has tried botox but i'll give her a ring and tell her about this stuff as well

[hondat]

Yer i still wear diapers. I am still trying condom caths an so far have found they leek/blow out an the bag only hold 500ml. Tena slip holds heaps more an it real doent bother me wearing diapers when i dont have to worry about wetting myself/find a loo in time.

[Gary Anderson]

I've suffered from spinal nerve damage for 18 years and have worn a condom cath ever since. My bladder control is quite good and I really only use the condom cath for extra security. Can't say I have had any problems with accidents.

[kennyren]

juls, on Oct 2 2006, 07:13 AM, said:

Thanks very much it's actually not for me, my bladder is really good and i'm able to go 7hrs without a wee which is how they trained it to be at rehab..unless i have a uti
My friend who is a little higher then me has a really sensative bladder and the smallest bumps or pressure on her lower tummy sets her off, she has tried botox but i'll give her a ring and tell her about this stuff as well

hi do you use nappies when you do your bowels

[juls]

Idon't use nappies, so i'm not quite sure what you mean when i 'use my bowels' i sit over a toilet.
Can you give us a little more info??

[kennyren]

juls, on Oct 11 2006, 03:30 AM, said:

Idon't use nappies, so i'm not quite sure what you mean when i 'use my bowels' i sit over a toilet.
Can you give us a little more info??

Hi you say dippers English word for them is nappies

[hondat]

Gary Anderson, on Oct 9 2006, 08:24 AM, said:

I've suffered from spinal nerve damage for 18 years and have worn a condom cath ever since. My bladder control is quite good and I really only use the condom cath for extra security. Can't say I have had any problems with accidents.

Yer i use Nappies for security cos i am less moblie an i have about 5 min warning before its to late. I dont use em when i am around a loo but if i am traverling i use them. Tried condom caths and i would like to get them to work for me but no sucsses yet

[juls]

kennyren, on Oct 11 2006, 10:08 PM, said:

juls, on Oct 11 2006, 03:30 AM, said:

Idon't use nappies, so i'm not quite sure what you mean when i 'use my bowels' i sit over a toilet.
Can you give us a little more info??

Hi you say dippers English word for them is nappies

In Australia we call them a kimby or a nappy and no i've never used them and didn't realise that people did, so hopefully someone else can help you out

[gm137]

'kimby', that sounds great.

I still use nappies because,as a high quad, it's the only really secure way of getting out and about without disasters. Like several of the other posters, I've tried condom caths with limited sucess, but if your injuries don't allow much control over bowels or bladder, nappies are probably the safest option. Having said that, most physios / continence nurses will advise on the options open to you as an individual patient.

[kyle19]

I dont have any problems worrying about having any bladder accidents, because I no longer can urinate without a catheter. But stool accidents do happen frequently; I have to wear adult diapers, because I have no sensation back there, the nerves which are located in my rectum are pretty much destroyed, so I choose to wear a adult diaper to prevent any accidents from occuring

[htwhlz97]

Damaged Goods, on Oct 1 2006, 02:45 PM, said:

. So, until they find something actually useful that can guarantee I'm not going to have an 'accident,' I'm stuck w/ wearing maxi-pads & making the not-so-healthy choice of drinking very little water. I'm too embarrassed to even type what I have to wear at night or during a long flight...... grrrrrrr.

I've read they are doing some research studies where they inject the bladder w/ botox, to help reduce the spasms... I wish I could sign up for this study. I'm so desperate at this point..... ugh! It really pisses me off! "lol"

Never feel to embarassed, if you cant share it hear you cant share it no where. WE all have pretty much expr all that. I too used to have to drink only limited amt of water to prevent leakage until I got bladder surgery. They just lifted it and slung it up to my abdomen because it was falling and made it leak alot. I never had to use a leg bag.

I didnt want to wear a diaper, man I wouldve saved myself alot of embar moments I should have just bit the bullet and wore them, I was being so STUBBORN I made myself so depressed because of the leaking, they wouldve eliminated all that until my surgery. So I give you credit, and I'm sure one day it will get better.

[Santa Cruz Soul Surfer (LRO)]

My injury is still fairly new (9 months) however, I make due durring the day for the most part, using a cath every 5-7 hours.

This post has been edited by Santa Cruz Soul Surfer (LRO): 17 December 2006 - 03:06 AM

[wheelygirll]

[color=#FF0000]I have alot of problems with my bladder and do wear attendant undergarments when i go out they are not a full diaper they are more like a pad but more absorbant i read a few post and envy those of you who do not have any prob with your bladder since ive been in my chair which has been 20 yrs sept i have always had a lot of problems and for those of you out there that are embarresed about putting on a pad wouldnt you rather wear a pad then pee yourself plus who sees it we are sitting down i would rather be in my pad then my pants and its all with what goes with being in a chair so all of you out there who say i would never wear one get use to it cause one day you prob will have to no big deal they are lifesavers

[scasey]

Not anymore!!! . For eleven years I had virtually no bladder control. Detrol LA helped, but I still had to wear the "undergarments". Five months ago I had the Botox treatment on my bladder. It was a breeze - no pain, in and out of the day surgery place in less than three hours. Within two days, I had no leaking or bladder spasms at all. I just need to self cath regularly. And it needs to be repeated after about six months. But, for me, this was a GREAT thing!

[Radar]

scasey, on Jan 10 2007, 10:29 AM, said:

Not anymore!!! . For eleven years I had virtually no bladder control. Detrol LA helped, but I still had to wear the "undergarments". Five months ago I had the Botox treatment on my bladder. It was a breeze - no pain, in and out of the day surgery place in less than three hours. Within two days, I had no leaking or bladder spasms at all. I just need to self cath regularly. And it needs to be repeated after about six months. But, for me, this was a GREAT thing!

Hi, I wear a Depends for safety (a brand name by J&J) as I like to call them. That way I do not get reminded by the word diaper. I do not have much of a problem with BM as long as I watch what I eat and evacuate daily. My bladder on the other hand is another story. Sometimes I wear a guard which is just a pad with two elastic holders. I laugh because they look like feminine napkins (do they still call them that?) with 70’s vintage elastcs!

I used to have to change them several times a day and have too know where all the restrooms were while trying to predict how much was in my bladder. Every time I bent over, exert myself or put pressure on my bladder I would leak or even empty my bladder completely. Even shortly after straight cathing. I have measured as much a 600cc of pee retention. What a mess it would be if I did not wear depends! Then my bladder sphincter (the valve) was damaged when a nurse blew up a Foley in the wrong place. Now I cannot retain much in my bladder most of the time so I had to switch to a condom catheter. Ironically I am now dry 99% of the time. It is great! I hate being wet and its affect on the skin. Ok, so I am a baby. At least I am a dry baby. Here is how I stay dry.

I use adhesive wide band CCs. Some are obvious. The tricks I have found to prevent blowouts are:
1) Route the tubing to prevent kinking. Can’t say enough about this!
2) I have gotten so used to this I sometimes find myself doing it in places I should probably not but you have to constantly check for kinks in the routing and for the beginnings of a blow out or loss of adhesion. I try to make it look like I am scratching (just barely more acceptable for a guy!) If it bothers others, too bad as they are not the ones getting all wet. I think most people realize we have to do what we have to do! The well adjusted ones do not think much about it. Of course, you need to wash afterward if you are cooking… So to the vain ones, grow up already.
2) Don’t let the pressure build up or press on the bag. ALWAYS and ALWAYS keep it lower than your bladder. It is not an IV!I If you do raise the bag high enough, the catheter blows up and starts to detach or you get a blowout worst case. This is not good for UTIs either as any pee that flows back into the bladder is no longer sterile. That is just my theory. Yes, there are valves but these cause problems with back pressure sometimes.
3) Use soap that leaves no oily residue or lanolin. No dry skin soap with lotion. Liquid soap works best I have found.I use lots of paper towels and warm water to thoroughly clean dry the area and remove all traces of soap. Cant say enough about that this.
4) I check the urethra opening to make sure there are no drops about drip out immediately before putting on the CC. If there is, I dry and dry and then dry some more. You must be completely dry!
4) This one is even more obvious but I use a wide band catheter. Its wider adhesive bad holds on much better and in a larger area. It is more forgiving.
5) Certain medications may attack the adhesive. Not sure about this one but it kind of makes sense. I am almost sure I have seen this.
6) Change the CC regularly every 12-24 hours depending on the batch. Yes there is variability in the stickiness of the adhesive. Some date codes hold better than others. This was admitted by the manufacturer of the brand I use. I called about bleeding caused by strong adhesive during removal and yes, some batches stick more than others. I had to stop using and throw out a box of 100 CC once for being to sticky. Fortunately I get my supplies free from the VA so no bigida. They are good about problems like that.
7) Attention to details is a must. You need to be as anal as possible or it will leak sooner or later!
8) Never but never pull on the hose or you will get hosed! Use a catheter holder. I found that Dale Foley Catheter Holders work the best for me. No adhesives, just Velcro and elastic with a soft covering.
9) I need to make it to 10 so… check your tubing every time you bend over or exert yourself a lot. If there is a pressure buildup, knowing you are about to detach gives you some warning. You should be planning where and when you will be changing soon!
10) Finally, be careful when you remove it. There is a very small margin between too sticky and not sticky enough! Removing it too early may . peel off the outer layer of skin. (TMI warning) Your weenie now starts to bleed a little or ooze a slightly thru the skin. If it does, the catheter will not stick well in that area. Obviously in this case not having sensation is a plus. Who would have thunk it! Any oozing or bleeding with proper cleaning is not much of a problem infection wise. I have Cellulitis and have never gotten a winky infections.

I think I beat it to death but it does work. In summary, no pressure buildup, cleanliness, dryness and being anal are the key to staying dry for you guys. You gals, sorry but you are SOL. Talking about penis invy for I am not aware of the equivalent for your whowhos. Come up with one and you will have it made in the shade! Actually, there is a type I never used cause it is sold only in 100s that might work if they make it for gals???? I doubt that it will due to the smaller area to adhere to. I better quit beefore I get sensored or get worked up.

You choose whether you want to be safe or not to and be vain out of contol. I personally freak out everytime I have a near leak situation. Yes I know you gals have it rougher. I cannot see a guy worying about a protective under garment unless at a beach.

I can't belive I just wrote this.
Gooday & Good Luck

Radar

This post has been edited by Radar: 10 January 2007 - 09:55 PM

[scasey]

Wow, Radar, that reminds me of what a hassle the bladder control thing is.......I had heard about this procedure, and did some research on the internet on it. I brought it with me on a visit to my urologist. At the time, my HMO wouldn't pay for it. But he kept after them, and they finally gave him the green light. I was his first patient for this, but he's a surgeon and had gotten himself trained on it. I had told him I didn't mind being the "guinie pig", and he was welcome to have other docs observe if he wanted. They did that "short term sedation" thing where you're only out for the procedure itself. (Frankly, I think they could do it with just local anasthesia once they get used to doing more of them). I had no adverse side effects from any of it.

Yeah, maybe it's more of a gal thing. But it restored some of the privacy and dignity that the injury had taken from me. I can wear things now, that I couldn't have then.

Anyway, I'm new here and I thought you all might be interested to hear of my experiences with it. If you think it's for you, don't hesitate to ask your urologist, neurologist or primary doctor. I'm real glad I did!

[Radar]

Sorry but…. Someone has to write about this stuff
Yes it might be but it might help some of those that are about to give up a workable low tech non prescription alternative to being constantly wet or super embarrassed. .After all, the topic started out with adult diapers (depends might be more PC). Right?

One key issue I did not address are UTIs. After several bouts of UTIs and the felling like crap for a week or more, I seem to have found a solution that works for me. I was told that vinegar kills the bacteria in the urinary tubing and bag. What good is to cleanup and put on a new CC if the rest of the equipment is full of bacteria. Using new stuff is practical and is wasteful. The one shot throw away stuff is not rugged enough fore me in any event. Once pee leaves the body, it immediately starts growing bacteria. Now this is key!!! You must flush and clean the insides of the bag and tubing dayly with vinegar. Being slightly acidic, bacteria do not like it. There is science behind this and not hocus pocus or magnets. Sorry!.

I use a quart or liter bottle with vinegar, attach it to the equipment via a connector, and fill up the tubing at the CC conection. Now I wait about a minute. Drain the tubing into the bag and repeat the process. I now have about 12-16 ounces of vinegar in the bag. I let it sit a while I continue doing my thing or at least a couple of minutes more while occasionally turning the bag. The very last thing I do before dressing is drain the vinegar. It helps keep the loo, as some of you say, clean too. I am now all set to go for up to another 24 hours.

The vinegar, the clear kind and not cider type vinegar, is cheap in gallons and also kills any odor. It works better than the commercially available flush products I used to use (Bard etc). In the last 4 years I have probably avoided up to a dozen UTIs so all this trouble is really worth it to me. Particularly since I am running out of antibiotics I can use. That probably is the key most important sentence and all of you on it regularly might want to rethink techniques that sooner or later result in UTIs. I rarely get one once a year now.

Finally, for real, pay attention to the color of the pee and stay hydrated. It is your second best tool to avoid UTIs. Too yellow or opaque and you need to drink lots of your fav liquid. You might just avoid yet another UTI.

Stay Hydrated!

Radar

Like I said, someone has to write about this stuff.

Radar

[keeptrukin]

I still wear diapers, kimbys, nappies, or nappers. I don't really have as many accidents as I did in the beginning, but accidents happen and I have had one in my pants without a diaper and I'd much rather wear one then clean that mess up.

I don't let it depress me I just laugh at the whole thing. I tell people who know me that I once worked with the elderly, now I am just like them. LOL I am always asking people if my diaper is hangin out. I don't let my pride get in the way. I figure it could be worse.

KT