Introductions - New Members Start Here

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Hello! Welcome to the NAFC Message Boards. We are so glad you're here.

If you're new here (or even if you're not) take some time to introduce yourself to the group! Tell us what brings you here, what you're going through, and your experience - chances are that someone here has experienced something similar and may be able to provide some advice, or at the very least, a kind ear.

Thank you for joining us! We look forward to chatting with you!
NAFC
 
Good Afternoon all!
My name is Ken Edmunds and I have been working (and studying) in the incontinence field for 20 years. My mission in this work is to advocate and provide person centered incontinence care for our elders wherever they may be living.
I joined to not only support the NAFC, but also to be in touch with people either living with some level of incontinence or perhaps caring for someone that is experiencing this. I've seen care provided in homes and in long term care communities of various care levels.
I also sit on the OH Person Centered Care Coalition board and the Career Nurse Assistants board where I am proud to believe our efforts make a difference.
If ever I can be of help to anyone, I would be proud to contribute to all of the voices within the NAFC that really do care about both treating and overcoming incontinence wherever possible.
Look forward to talking with you here!
 
Hey Ben,
Hope you are having a good day :)
If there is an aspect of dealing with UI that is causing you any unexpected issues (or you think could be improved upon), I think this is a pretty educated and empathetic forum to seek answers.
Ken
 
Gotta go give some very reluctant bathers their nightly showers. You should be able to hear us from wherever you live :)
Night
 
My urinary incontinence is caused by Marfan Syndrome, a genetic disease in which the body makes defective fibrillin, a structural protein necessary to bones, cartilage, tendons, spinal discs, cardiac valves, the walls of blood vessels, and corneas. Because of Marfan, I have two fractured vertebrae and three compressed discs, which cause me intermittent sciatica and incontinence. I have had some six urological surgeries over the years and currently manage with diapers and plastic pants. Also, my stomach is paralyzed, (gastroparesis), which makes bowel control difficult.
 
I'm a mom of an older child you still wets the bed nightly. If anyone is looking for a mattress/sheet protection solution, take the time and checkout peapodmats. www.peapodmats.com The mat has worked wonderfully for us!:)
 
Ken My daughter is 18 and is incontinent at night, so far. She has high pressure and a spastic bladder. About 3 months ago, she had a bladder pacemaker put in. It worked great for about 3 weeks. We think the leads have moved. She is very thin and has little fat to hold them in place. So she's trying some meds, and then we're going to ask the doctor to re-do the leads? We'll see. She's graduating and wanting to do mission work somewhere int he world, so buy diapers may not be an option!!! We'll just have to wait and see.

Dede
 
Dede
It sounds like you have an outstanding child and I can imagine (being a father myself) just how proud you must be. Also, as a father, I can imagine how concerned you must be regarding your daughter's medical situation.
Well, I am not a fan of using disposable incontinence products unless all other options have been exhausted. It sounds like there are some medical treatment possibilities that have not yet been fully explored (meds/realigning the leads). I would continue to work with her doctor to fully explore whether those methods could successfully overcome her incontinence.
If these methods cannot successfully deal with her incontinence, then we have to start looking at other options...such as disposable incontinence products. There are many companies that sell these types of products. I am not certain of their policies on shipping to countries outside of the U.S. I suspect that there are several companies that would actually do this, although the freight charges would probably be very high. Your other option is, assuming you live in the states currently, to take advantage of a sellers free freight policy and have them shipped to you Dede. Then you could ship the products via USPS (Postal) to your daughter wherever she is. Those types of freight charges are likely to be much less. Let me know if you need help finding a company to work with to provide you with the products if you have to go down that path.
Good Luck!! :)
 
Thanks so much for your reply! Yes, we're hoping that something will work before our daughter takes off in the fall! She wants this problem fixed, but we ,she, might need to realize her issue may not be able to be fixed , at least at this point. We're in the US now, in NC, so there is always a possibility of going to Duke, where the doctor there has had many more cases of doing the implantation, or UNC. We'll just have to wait and see.

Thanks again

Dede
 
Dede,
I'd be very happy to believe I helped you! I think you've probably already done this, but just in case...
It's recommended that your daughter always try to empty her bladder completely just before bedtime. On nights where she can't do this, it may be wise to use some type of underpad that would eliminate or cut down on soiled linens. Also, (and this is especially true from the afternoon on) avoiding things like caffeine, refined sugars, citrus, and even some dairy products can be helpful. These types of foods/drinks tend to stimulate the bladder.
It really sounds like the true issue is only at night and only because the need to empty her bladder is not waking her up to toilet.
Good Luck...and let me know if you need more info.
 
Because of the high pressure in her bladder and the spasms....her badder doesn't empty completely, every time she goes. The doctor was sweet enough to explain to her that this is not her fault. Then she falls asleep, and the left over urine from all day, comes out. So it's crazy. We know that the pacemaker did work for 3 weeks, so were so hoping it can work again. It sad, because she's hardly done sleep overs, or been able to go to summer camps,etc. It's really shaped her personality to not have too many friends, except for adult teachers. She has one great friend who knows about her condition. Sometimes she will not drink at all during the day to avoid wetting, which isn't good. She really need to gain a little weight, and maybe the leads would stay in place, so we'e pushing the burgers and fries and shakes. She really doesn't like food! We're setting a goal of 5 lbs to gain....it's all a vicious circle!!!! But thanks for all of your ideas.....I'm sharing them with her.
 
I'm 34 developed extreme urinary frequency/urgency/hesitation/leakage/incontinence. Problems developed during a very stressful time in my life. Things eventually got better, however I'm stuck with all the bladder woes. Urinary frequency is in the 20-30 range daily now. Incontinence is relatively light, but still wearing diapers or pullups 24/7 for the last two years now. I'm also a regular Foley catheter user, These have been a lifesaverit has been the only thing to help me. No pills have worked and 13 doctors have told me next to nothing for information. I believe it to be Interstital Cystitis with coexisting Overactive Bladder.
 
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