www.incontinentsupport.org

I see this on Facebook a lot so I thought I’d share a little and I hope you all will copy/paste and share a little about yourself WITHOUT personal identity information.
I have shared more with members here than with my family over the past few years and you all have helped me through many difficult times. I want to thank you all!

1. Is your incontinence urinary, bowel, both, or neither?
Urinary

2. Are your diapers disposables (tab) , cloth, pull-ups, pads, combination (with percentage), or none?
Cloth 80%, disposable 15%, pull-ups with pads 5%

3. Is your incontinence due to an accident, illness, birth defect, child birth, other?
Birth defect, child birth

4. Have you been treated by medical doctors for your incontinence? Tests, drugs, surgery, etc? Status?
Many tests. Many drugs. Stopped all drugs. Side effects.

5. Does your incontinence (only) limit you from living a full and happy life?
Nope

6. Are you single, married, engaged, sharing your life with a partner? Children?
Married with children

7. Do your immediate family members and close friends aware of your incontinence? Generally accepting?
Yes and yes

8. What part of the world do you reside?
USA- Texas

9. Do you find that this forum helps you deal with or manage your incontinence?
YES!

10. I can’t think of anything else to ask. What else would you like to add?
I was once asked if I “enjoyed” wearing diapers in a PM. I have been incontinent most of my life. I don’t have the luxury of choice. I try REAL HARD to normalize diapers in my life, else I get depressed.

1. Is your incontinence urinary, bowel, both, or neither?
both
Bowel accidents are rare (thankfully) due to timed voiding and dietary management

2. Are your diapers disposables (tab) , cloth, pull-ups, pads, combination (with percentage), or none?
99.9% disposable tabbed style plastic-backed briefs

3. Is your incontinence due to an accident, illness, birth defect, child birth, other?
A birth defect for bladder issues, illness/ disease for bowel issues

4. Have you been treated by medical doctors for your incontinence? Tests, drugs, surgery, etc? Status?
Many tests. Many drugs stopped due to side effects, two surgical unsuccessful "repairs" stemming from birth defect

5. Does your incontinence (only) limit you from living a full and happy life?
not at all

6. Are you single, married, engaged, sharing your life with a partner? Children?
recently divorced

7. Do your immediate family members and close friends aware of your incontinence? Generally accepting?
Yes and yes

8. What part of the world do you reside?
USA- Florida

9. Do you find that this forum helps you deal with or manage your incontinence?
YES!

10. I can’t think of anything else to ask. What else would you like to add?
I learned long ago that diapers allow me to live an active life and have not prevented me from doing anything and they are just tools.

_________________
Incontinence does not Define NOR limit you!
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Interesting thread. I'll play



1. Is your incontinence urinary, bowel, both, or neither?
Urinary however I have had very rare bowel accidents. I'm thinking it is from a weakening of the pelvic floor muscles.

2. Are your diapers disposables (tab) , cloth, pull-ups, pads, combination (with percentage), or none?
A combination of cloth, tab style and pull ups. I try to wear cloth as much as possible for cost savings but there are times where they are just not practical. Tab style with plastic backing all the time at work and pull ups only when I'm going to vigorously work for an hour or two for comfort and if I am in between changes for a short time.

3. Is your incontinence due to an accident, illness, birth defect, child birth, other?
Illness for me. That and the fact my diagnosis was delayed because they thought it was due to something else.

4. Have you been treated by medical doctors for your incontinence? Tests, drugs, surgery, etc? Status?
Yes, several doctors and specialist. Many test and drugs. Not surgeries other than an procedure called a hydrodistention where they filled the bladder to expose any damage and get a diagnosis. Still on several medications including two that have to be directly administered into the bladder every night.

5. Does your incontinence (only) limit you from living a full and happy life?
In some ways yes. Sex has been an issue. Also it has stopped other activities I used to enjoy. Things like long hikes, remote camping and and activities involving a climbing harness.

6. Are you single, married, engaged, sharing your life with a partner? Children?
Married for 18 years. Two children, 13 and 14.

7. Do your immediate family members and close friends aware of your incontinence? Generally accepting?
Immediate family, yes. Wife is very supportive and understanding. Kids know but we just don't talk about it every. My closely trusted co-workers know and a small handful of close friends. All but one have been very supportive.

8. What part of the world do you reside?
USA-North Carolina

9. Do you find that this forum helps you deal with or manage your incontinence?
Yes. More in my past and the beginning of this journey.

10. I can’t think of anything else to ask. What else would you like to add?
Probably my biggest challenge came from this happening mid-life. It hit me mid to late 30's and now almost 10 later has been life altering.

I’ll play too.

1. Is your incontinence urinary, bowel, both, or neither?
Urinary. But I have the occasional bowel accident. For some reason surgeries affect my bowels and I’ve had 8 of them. After my amputation I was very much bowel incontinent.

2. Are your diapers disposables (tab) , cloth, pull-ups, pads, combination (with percentage), or none?
95% disposable (tab) and 5% pull up. I wear pull-ups after I get up in the morning until I have my morning bowel movement because I don’t tend to leak then. I have my coffee then change into a tab diaper.

3. Is your incontinence due to an accident, illness, birth defect, child birth, other?
Accident. I fell down an escalator and paralyzed my bladder/nerves on impact.

4. Have you been treated by medical doctors for your incontinence? Tests, drugs, surgery, etc? Status?
At first it was drugs and a failed urodynamcs test (they couldn’t get the catheter in me). When I finally got over the trauma of that I let them do another one. There they realized I have a paralyzed neurogenic bladder. No surgery or drugs will fix it.

5. Does your incontinence (only) limit you from living a full and happy life?
Yes and no. I have been hesitant to get into a relationship. and it’s kind of a challenge to manage staying at other people’s houses.

6. Are you single, married, engaged, sharing your life with a partner? Children?
Single. No kids. One cat.

7. Do your immediate family members and close friends aware of your incontinence? Generally accepting?
My family knows (parents, sister and aunts cause my mom tells them everything. hah) friends know as well. All are accepting. I think because mine stemmed from an accident it’s easier to accept. And sometimes harder to hide.

8. What part of the world do you reside?
USA-Washington DC

9. Do you find that this forum helps you deal with or manage your incontinence?
Yes absolutely. It was certainly a lifesaver when all this started 5 years ago.

10. I can’t think of anything else to ask. What else would you like to add?
Nope.

1. Is your incontinence urinary, bowel, or both?
Mostly urinary; however, when I get my diet and meds wrong, I can have days of unpredictable bowel accidents.

2. What type of diapers do you use?
Mostly washables at home; disposables when out and about and traveling.

3. What caused your incontinence?
A genetic disease (Marfan Syndrome) led to a spinal injury to the nerves which control my bladder. My bowel issue is caused largely by a paralyzed
GI system, plus the nerve injury which affected my bladder has also affected my colon.

4. What treatment have you had for incontinence?
I have had several bladder surgeries, a bowel procedure, and several cycles of pelvic floor therapy and one cycle of occupational therapy.

5. How has incontinence limited you?
Not too much. When I'm out and about, I pack my gym bag and go about my business.

6. Are you single or married?
Married, with two children.

7. Do your family and friends know that you are incontinent?
My family know, and the neighbors see my diapers drying outside in warm weather.

8. Where do you live?
I live in a village in the Allegheny Plateau, 90 miles southeast of Pittsburgh.

9.Is the forum useful for you?
This forum offers me a community of support unavailable elsewhere in my life. Although incontinence is slowly emerging from its former taboo status, it remains a topic well outside polite conversation.

10. Do you have anything to add?
This past Monday, while I was shaving, I had an episode of double vision which did not resolve for 90 minutes. It was scary, and I could scarcely walk. My ophthalmologist told me to go to an emergency room if it happened again. I spent the rest of Monday, Tuesday, and Wednesday lying down. Incontinence was not an issue because I could not keep fluid, or food, down. Although my family are more concerned about my risk of falling, in my mind, incontinence largely defines me. It is who, and what, I am. Coming to terms with it in a supportive community means the world to me. Thank you.

1. Is your incontinence urinary, bowel, both, or neither?
Urinary

2. Are your diapers disposables (tab) , cloth, pull-ups, pads, combination (with percentage), or none?
Disposable with booster pad 95%, pull-ups 5%

3. Is your incontinence due to an accident, illness, birth defect, child birth, other?
Illness, back surgeries, pregnancy

4. Have you been treated by medical doctors for your incontinence? Tests, drugs, surgery, etc? Status?
A few tests but no drugs, took me a while to get off the narcotics.

5. Does your incontinence (only) limit you from living a full and happy life?
Nothing other than the usual inconvenience associated with it.

6. Are you single, married, engaged, sharing your life with a partner? Children?
Single

7. Do your immediate family members and close friends aware of your incontinence? Generally accepting?
Yes and yes

8. What part of the world do you reside?
USA

9. Do you find that this forum helps you deal with or manage your incontinence?
Yes

10. I can’t think of anything else to ask. What else would you like to add?
I lived in Canada for a while

1. Urinary, though PMS definitely has me at risk for bowel issues. Excess prostaglandin levels are a pain in the literal butt.
2. We do not know why I have IC. I have PTSD which probably contributes (nightmares, and I struggle with dissociation/flashbacks during really tough times), and this manifested with an eating disorder with 13 years, so there has been suggestion made that an imbalance of hormones/atrophy has contributed. Likewise, I developed MCAS and POTs into recovery at 23 and POTs can cause urgency issues/ incontinence in itself as there is inappropriate communication between the nervous system occurring, and MCAS also seems to have clinically significant impact of bladder issues (PBS, frequent urination, and I know that I retain a crap load of water and antihistamines have be going every 20 minutes peeing that out, ugh). I personally think if my PTSD was addressed and if my other health issues were properly managed I would be 75% cured. May not be perfect, but not as significant.

3. I use disposable briefs, as a younger female who has had no children, adult pull-ups literally just don't fit me right. I also have heavy urge incontinence so I just end up having to change them every hour or so which is not feasible. I find using booster pads in cheaper briefs isn't effective, but in a good quality brief is very effective. I use cheaper supplies at home and good quality briefs when out or on very bad days due to finances.

4. I have been on 3 anticholinergics, but the last time I tried a medication I had a bad allergic reaction to it due to another health condition. They helped with daytime urgency but made nocturnal issues a bitch because I would drink even more than I already do. I've been to a urologist once (I'm pretty closeted about my condition due to my age and living situation, but I am definitely trying to work on that) and am going back recently, but trying PT in accordance with my general doc.

5. I think if I lived independently I would not have too many issues with my QOL. I am more afraid of my own family's disgust or embarrassment than the judgement of a stranger. They aren't supportive in multiple aspects of my life including other serious health issues, and I likewise expect that they would express more embarrassment than me in addition to not keeping that private conversation to themselves. Thus, if I haven't had to spend the last several years closeting my condition in my own damn house, I probably would have significantly less issues with acceptance and QOL. This is a huge goal in moving out is so that I feel more confident to manage my various health issues without judgement or shame and establish an unashamed, independent identity. At that point, I will probably only be a little concerned with leaks, cost, and the frustration of trying to squash a diaper under jeans targeted for hipster millennials.

6. I am single and have three children: two cats and a horse.

7. No, only my health care providers and a few incredibly close friends are aware. I would like to change this as secrecy perpetuates the stigma, but I physically need to be distant from my family before I consider telling them. Honestly they probably already know but I do not know for sure, and it continues to shock me how they seemingly still have no idea (it's been a while).

8. Trump nation

9. Yes

10. I sing, play a bit of violin (quit in high school and had to relearn, worst decision every), and various other instruments, compose music here and there and hopefully will be able to ride my horse again as we treat my other health issues!

8.

1. Is your incontinence urinary, bowel, both, or neither?
Urinary

2. Are your diapers disposables (tab) , cloth, pull-ups, pads, combination (with percentage), or none?
Home made cloth 85% disposables 15%

3. Is your incontinence due to an accident, illness, birth defect, child birth, other?
Enlarged prostate

4. Have you been treated by medical doctors for your incontinence? Tests, drugs, surgery, etc? Status?
Some tests, tried drugs a long time ago but stopped them due to side effects.

5. Does your incontinence (only) limit you from living a full and happy life?
No limits, I do what ever I want.

6. Are you single, married, engaged, sharing your life with a partner? Children?
Married (Dec 2020 will be 53 years)

7. Do your immediate family members and close friends aware of your incontinence? Generally accepting?
Yes

8. What part of the world do you reside?
USA FL

9. Do you find that this forum helps you deal with or manage your incontinence?
Yes

10. I can’t think of anything else to ask. What else would you like to add?
I make my cloth diapers, flannel and terry cloth. Cost is very low. I play cello and recorder. Compose a little music.

_________________
RetiredRN

1. Is your incontinence urinary, bowel, both, or neither?
Urinary

2. Are your diapers disposables (tab) , cloth, pull-ups, pads, combination (with percentage), or none?
Cloth 90% disposables 10%

3. Is your incontinence due to an accident, illness, birth defect, child birth, other?
Weakened pelvic floor muscles staring in my late 20s, followed by a surgery that completely destroyed my pelvic floor at 36. No children, but my urlogist tells me I have the pelvic floor of someone who's had 4+ children! Diapers are my only option at this point.

4. Have you been treated by medical doctors for your incontinence? Tests, drugs, surgery, etc? Status?
Usually tests and drugs until the urologist figured out it was my PF. No luck with therapy and I'm not a candidate for the surgeries.

5. Does your incontinence (only) limit you from living a full and happy life?
None, I live a very normal life.

6. Are you single, married, engaged, sharing your life with a partner? Children?
Twice divorced, lesbian, share my house with my girlfriend. Zero kids for me, but she has three half time. Also living in my house is one grumpy old pug, a cat that showed up at my front door two winter's ago from one of the farms around me, and a puppy mill mom I just rescued last week, she's a King Charles.

7. Do your immediate family members and close friends aware of your incontinence? Generally accepting?
Yes and yes. Having an in person support group was the best thing I did when becoming diaper dependant.

8. What part of the world do you reside?
Wisconsin

9. Do you find that this forum helps you deal with or manage your incontinence?
Yes.

10. I can’t think of anything else to ask. What else would you like to add?
I run an IT department by day, which I hate, so I teach scuba diving in my free time.

1. Is your incontinence urinary, bowel, both, or neither?
both

2. Are your diapers disposables (tab) , cloth, pull-ups, pads, combination (with percentage), or none?
disposable briefs

3. Is your incontinence due to an accident, illness, birth defect, child birth, other?
I had two massive strokes during My third pregnancy. Also having a very progressive form of MS left Me quadriplegic.

4. Have you been treated by medical doctors for your incontinence? Tests, drugs, surgery, etc? Status?
Yes I've been in and out of the hospital. DRs Specialist for so many different reasons over the last 28 years.
5. Does your incontinence (only) limit you from living a full and happy life?
I do not live a normal life by any means. But thanks to My husband , Children , family, friends caregivers etc. & My church. I do manage to still enjoy My life much of the time.

6. Are you single, married, engaged, sharing your life with a partner? Children?
Married with 3 daughters.

7. Do your immediate family members and close friends aware of your incontinence? Generally accepting?
Most of them I think. Its not something We talk about. But anybody that spends any length of time in our home. Around Me or My caregivers will eventually understand.
8. What part of the world do you reside?
USA

9. Do you find that this forum helps you deal with or manage your incontinence?
Yes. Just knowing there are others helps. I spend a lot of time on the internet. I'm on other forums for MS, quadriplegia disability etc

10. I can’t think of anything else to ask. What else would you like to add?
I Hope everybody is staying safe and healthy during this time. God bless. Happy Easter.