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 Post subject: Quality of life?
PostPosted: Thu Feb 03, 2011 9:41 am 
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Joined: Thu Jan 27, 2011 7:06 am
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I am a student at De Montfort University in England. I have also been a carer for over two and a half years. I am doing a research study into how incontinence affects quality of life for sufferers.

Would anybody be willing to answer a few questions about how the condition has affected you?


Please post or contact me


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 Post subject:
PostPosted: Thu Feb 03, 2011 3:25 pm 
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Your best bet is to post the questions. Anyone who is willing can answer the ones they are comfortable with.

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 Post subject: Quality of Life
PostPosted: Fri Feb 04, 2011 4:52 am 
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Thankyou.

These are my questions:

1. Do you feel incontinence is freely spoken about? Or would you consider it a taboo?

2. What are the main physical side effects you suffer, from the condition, products, drugs etc?

3. How does it affect you socially?

4. Would you say your body image changed/distorted?

5. Has being incontinent affected your self esteem? If yes in what way?

6. What products do you use? Does effective management of the condition increase your self esteem?

Thanks :)


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PostPosted: Fri Feb 04, 2011 11:09 pm 
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Hello KT, I will post my feelings on your questions.

1 – It is definitely not spoken freely of, for me anyhow. Even my doctor has not really plunged into an in depth conversation on the subject with me, he just knows I have urgency issues, and that I use protection to avoid wetting my pants, that is about it. There are not too many people I know in the general public that even mention it in conversation, even if discussing a medical problem that could be tied in to incontinence. Embarrassment, maybe? Lack of real, truthful knowledge on the subject? Possibly.

2 – I am fortunate that I really do not suffer from any side effects, besides the rare rash, that is about it. Being pro-active on staying clean, and using protective creams/barrier ointment is essential to avoid rash problems. I have never taken any medication for bladder urgency or over-activity, but that could be down the road. I am shying away from them due to the reports on all the side effects they produce, with little or no real benefit from taking them. I am fortunate that I only have bladder issues to deal with, bowels are not a problem area for myself. That whole area is MUCH tougher to manage, for sure.

3 – Socially, it definitely does impact me in what I do and where I go. I use an external collection system if I am going out all day and am with people, that way I do not have to worry about changing, leaks, or odors. When I use that system, I can pretty well do whatever I could before I had to worry about my bladder. With disposable products, be it pull ups, pads, or diapers, there is always pre-planning to do it you are going out for the day, and I know people will avoid certain social situations because of their incontinence. I do not go out as often as I did, but am not housebound because of it, I just need to know ahead of time and use the right product for what I am going to be doing for the day.

4 – No, for me I am secure in the body I have, and the image I have of it. I do not like the fact of needing to wear a diaper, or how I look when in one, but it is a fact of life for me, and I have gotten over it. Now, it is just considered “going out underwear. ;-)

5 – Has it effected your self esteem? I have to say yes to this one, but it does get better as life goes on. Not being able to manage your own body functions can be so frustrating; it could drive you mad if you let it. I don’t feel good about myself, at 43 and needing a diaper or peeing into a leg bag to avoid wetting my pants, but I have enough of a medical history to point to as ample reason for needing to wear something, so with that in mind I don’t get too down on myself for my inability to hold a full bladder until I get to a bathroom. It can definitely wear you down if you let it, some people have a much easier time with accepting it and not beating themselves down over the fact, others take much longer to get over it, and some never do.

6 – Products for myself vary on situation. Full days out of the house I use an external catheter system, it works best for me for an entire day away from the house, and I can rely on it in just about any situation, never had a failure that left me wet or embarrassed. Daytrips out to town for a few hours (up to 4) I use a Tena Super disposable diaper, enough absorbancy to deal with my output when I can’t make the bathroom, and it allows me to not have to stress out on always being on the lookout for where the next restroom is located. A coverpant overtop just in case I get a leak spot, it keeps it from showing on clothing. I used the Tena diaper at night for many years, but I don’t have night wetting issues every night, it is hit & miss and I found I was wasting quite a bit of money on supplies that were not utilized, so I recently changed over to cloth and coverpants for night time, easier on the wallet, and not much more laundry to deal with. If they do not get used, no wasted money, and for me they actually work better then a disposable diaper did when I do need it. I also feel better about myself having to go to bed in a cloth diaper, then a disposable. It does not seem as infantile to me, just a really thick pair of underwear with a waterproof cover over top. The image that the media has created about the modern diaper only being needed by infants or the elderly/infirm takes a bit to break down in your head, that YES, people in their youth, mid-life or senior years need and use diapers for incontinence day and night. It has been more accurately portrayed in the last decade as affecting all ages.
Self-esteem is much better when I am confident in my protection, and I can go about my day without worrying about it failing. I have taken holidays in the summer, travelled 5000+ kilometers on a motorcycle, and slept in a tent every night with the external catheter system in use 24/7, and I felt like there was NOTHING I could not do when I got home from that trip, almost like I never had a bladder problem at all, it was never an issue that had any effect on my days/nights events. When you live with incontinence for so long, for myself it feels strange to not have “something” on when I went out, even for a short trip, and I am much more nervous and unsure of myself. Whatever you wear or use soon becomes part of you if your problems do not get better or medically repaired, that is for sure, but you have to remind yourself that what you use “is not you, it is just what you wear to manage your problem”.

I hope I didn't ramble on too much in my replies! :-)
I do hope this gives you a bit of insight, and that a few more members post how they feel about it all… Best of wishes for you education, Puffy


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 Post subject: Survey
PostPosted: Sat Feb 05, 2011 8:14 am 
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Location: New England
Great job, Puffy,

I can't really add anything to what you've said!

Ditto all for my input!

JoeK


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 Post subject:
PostPosted: Sat Feb 05, 2011 3:47 pm 
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Location: "Wet Coast" B.C., Canada
Thanks Joe, I do hope others will add to this post, it would be interesting to get other views on what their thoughts are and how they cope with it all compared to myself... sometimes I wonder if I do things differently from the general incontinent population out there, but most likely very similar... still be interesting to read though, :) Puffy


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 Post subject: Quality of Life
PostPosted: Mon Feb 07, 2011 5:35 am 
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Joined: Thu Jan 27, 2011 7:06 am
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Thanyou so much for your reply. It has given me a very valuable insight. It is so difficult to encourage people to talk about it and I appreciate you sharing your experiences.
Thanks again :D


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 Post subject: Re: Quality of Life
PostPosted: Wed Feb 09, 2011 7:17 pm 
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Joined: Sun Feb 06, 2011 12:18 am
Posts: 21
Location: Victorville, CA
kt wrote:
Thankyou.

These are my questions:

1. Do you feel incontinence is freely spoken about? Or would you consider it a taboo?

2. What are the main physical side effects you suffer, from the condition, products, drugs etc?

3. How does it affect you socially?

4. Would you say your body image changed/distorted?

5. Has being incontinent affected your self esteem? If yes in what way?

6. What products do you use? Does effective management of the condition increase your self esteem?

Thanks :)


Here are my answers.

1) It's mostly taboo. It is only openly discussed in a forum such as this, where we all have the same issues, and along with some friendly banter, we pose theories, ideas, worries, concerns, and solutions which help each other. I believe that if there were meetings, face-to-face and in person like AA or other groups - it would fail, and no one would attend.

2) The physical side effects I suffer from are occasional embarrassment, heightened sense of caution when doing things, and being in quieter than normal places, where my underwear may be heard more easily. Drugs - well, I have to say I've tried several. None have worked, and one almost killed me. The best side effect was dry mouth - the worst was almost walking off the balcony at 2am when I was sleepwalking. Sleepwalking became more and more common on one of the drugs, which - was one I had to be weaned back off of. So - with the concern of sleepwalking, I made it a point to put bells on all upstairs doors leading outside, as well as closing the bedroom door so I didn't tumble down the stairs leading up to our room.

3) Socially - I'm not too affected, with the exception of the aforementioned occasional embarrassment and hightened sense of caution. I figure no one knows what I wear, so I need to focus on my "acting as if I was not wearing them". In the beginning, though - this answer would be totally different than it is today.

4) my body image has not changed due to being incontinent. Sure, i may have a bit more padding in my underwear than the guy next to me in line - but with the shirts i wear - I doubt anyone looks at my butt or crotch looking for a bulge.

5) Self Esteem - Again - Not really. Several years ago again - would have garnered a very different answer than today. I don't base this on society being more "accepting" of the condition, rather - I'm more accepting of myself. i feel no reason for "society" to need to become accepting, because I don't talk about what underwear I use with "society". It's not a visual aid such as glasses, hearing aid, walker, or wheelchair.

6) Products - I use disposables. Granted - in the summer - they hold in a bit of heat, causing more sweating, but the plastic outer liner does not chafe my legs as they begin to sag. Even without sagging, the cloth outer shell still causes a bit of a rub. The plastic doesn't do this. I do, however - wear a pair of tighty-whities over my diaper during winter months, mainly due to the "hang" factor. When they hang away from the body - and it's cold out - you can immediately feel the wet diaper being cold when you sit, or move. Having the cotton underwear over a diaper keeps an internal temp closer to that of one's body.

7) Although you didn't touch on this - here's my experience with my wife.
At first - she didn't know for a year and a half that I was using anything to control leaking, nor did she know about me leaking. This was a huge embarrassment for me. Finally, we were getting ready to go on a 2 week road trip vacation. I had no choice but to let her know, and giddy with relief at the awesome way she handled it. Being that we had (at the time) two young sons - I was extremely worried about changing in a one room (2 bed) hotel room. Several plastic grocery bags were brought along with us, in our suitcase, and in the morning, I'd grab a diaper and a bag for disposal of the soiled one. Drop it in the trash, and toss some toilet paper over it after blowing my nose. Kids didn't notice, and it worked out great. Now - on to sex life. Hmmm. That was a challenge. I learned to make sure that I went to the bathroom before anything happened. My biggest worry was obviously, peeing on her. Well, thanks to urge incontinence, and an erection, nothing leaks from me. However - as the erection subsides, I go to the bathroom, and then return. Today - we have a routine, if you will. Back then - it was learning the routine. There were a few small hit and misses, but all in all - things worked out well.

I hope this helps you in your data gathering exercise.

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 Post subject: Re: Quality of Life
PostPosted: Wed Feb 09, 2011 10:34 pm 
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Joined: Wed Nov 03, 2010 9:47 pm
Posts: 16
kt wrote:
Thankyou.

These are my questions:

1. Do you feel incontinence is freely spoken about? Or would you consider it a taboo?

2. What are the main physical side effects you suffer, from the condition, products, drugs etc?

3. How does it affect you socially?

4. Would you say your body image changed/distorted?

5. Has being incontinent affected your self esteem? If yes in what way?

6. What products do you use? Does effective management of the condition increase your self esteem?

Thanks :)



1. In the short time that I have been dealing with this, I have found the inability to discuss it with anyone else very difficult. I am a talker, and am used to being able to use friends/family for advice. This is a topic that simply would be too uncomfortable to talk about with anyone else. I can't imagine how folks dealt with this before the internet, it must have been tough.

2. I don't have any other physical side effects.

3. So far, it has not had a great impact on me socially. I have been able to go about day-to-day life pretty well. I think the only thing I deal with now is that I am constantly putting my hand behind my back and checking to see if my diaper is showing.

4. My body image is unchanged from before having to wear a diaper. Wearing a diaper hasn't changed the fact that I need to lose 30+ lbs :)

5. I would say that the most dramatic effect of incontinence has been to my self-esteem. I have been struggling a great deal with this. I am constantly struggling with denial issues regarding this. I am always 2nd guessing my self with frequent thoughts of: "Maybe I am not trying hard enough to make it to the bathroom"..."Maybe it's all in my head and I just need to concentrate more"...If I feel that I used my diaper when I maybe could have made it to the bathroom, I have feelings of guilt. I am getting better, but it still haunts me. I can't help but think that my wife is disappointed in me in some way, and is not happy being married to the 40 yr old guy in a diaper. She has been fantastic through out this whole thing and has been nothing but supportive, this is just in my head. So I guess for me, the emotional effects of incontinence is something that causes me great difficulty.

6. I have been using mostly diapers to manage this up to now. I have tried a leg beg but didn't care for it that much.


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 Post subject:
PostPosted: Thu Feb 10, 2011 3:28 am 
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Joined: Sun Feb 06, 2011 12:18 am
Posts: 21
Location: Victorville, CA
@ campingFool

Wow. I continue to be amazed. I thought I had said what I feel - and then you come along and post your answer to #5. It really hit home. I do feel somewhat the same way. Maybe I look at it differently, but basically - you hit that damn nail right on the head, and I believe, that although we feel comfortable "today" and have come from that place "when everything started" is so much different.

Your statement is awesome: ""Maybe I am not trying hard enough to make it to the bathroom"..."Maybe it's all in my head and I just need to concentrate more"...If I feel that I used my diaper when I maybe could have made it to the bathroom, I have feelings of guilt. I am getting better, but it still haunts me."


Good answer to #5, buddy! Kudo's to ya!

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Just my 2 cents, which ain't worth a penny in today's economy.....

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Michael


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