www.incontinentsupport.org

Hi everyone, I had my first appointment with my new incontinence nurse on Monday, and despite me and my partner both explaining my issues to her in detail, we don't think she understands the severity of my incontinence. Apparently the most absorbent product they supply is the iD expert slip, which is what I was using before I found the tena ultima last year. I remembered the issues I had with them back then, but I sacked it up and tried the samples. During the 1st voiding they leaked every single time, and twice I've ended up soaked, and in a Puddle, once stood and once sat. I told her during the appointment the issues I had with them last time, but she was convinced they'd work "because they did for everyone else". I don't think she has any experience with people with spinal injuries, and people whof have no bladder control or sensation, and who's bladders just suddenly expels a full bladder in just a few seconds.

She's put me on a different medication too,does anyone have any experiences with toviaz (fesoterodine fumarate)?

Last question, promise! Does anyone use zorb boosters? If so, how many at a time, I bought some by the meter and have cut to size some boosters, but not sure how many to start out using.
Hope everyone is well, Cheryl

Yeah I've taken it. If I recall correctly it took all of the water in my body and made it pool in my feet and legs. It's also what led me to develop gout as well (I believe). It did absolutely nothing for my urges though.

I totally understand your frustrations with those thinner diapers too. They couldn't contain my flooding either, yet it's what everyone with minor leaks or dribbling always recommends. You need more fluff material for flooding, and only the best premium diapers have worked for me. You've really got to get your nurse to understand that with any kind of flooding incontinence you absolutely need more fluff for the diaper to be able to absorb it all quickly enough.

Boosters never worked for me either too. Most of my pee would just flow around the booster before it could get absorbed. Heck, it seemed like at times a booster would only redirect my pee past most of the diaper so it would leak even faster. I did eventually learn though, that if I cup a baby diaper over my penis, then diaper up, that this will act as a sort of dam to slow down my flow enough for the adult diaper to absorb it better. Plus the baby diaper will very quickly absorb most of what you flood at first, better than any adult diaper can. It's like baby diapers have a whole different level of technology in them that is decades ahead of adult diapers. You may want to try this as well until you can get better diapers.

I understand your frustration with healthcare workers. They just don't seem to listen, it really pisses me off. I've had to become forceful when I deal with them. I still regard most doctors with contempt. Personally, I wouldn't take any medications. I don't know anybody who has had great success with any of the medications they prescribe. I just diaper up and get in with life.

PB&J32 You are spot on medication has side affects, I too just diaper up and live life to the full and I am happy now with my life I do get frustrated and have accepted that wearing diapers gives me control back.

Greenbank

After every thing I have been through I would were protection and been done with it, medication will just mess something else up while not fixing the issue. Far as boosting your diaper, yes when not using the bladder controller, I single boost in the day time and double at night. I use to double diaper while travelling, now Foley on trips of more than three hours.

Thank you guys so much for making me feel not so alone, when it comes to not wanting to take Meds. What annoys me the most, is that my old clinic had made me an appointment to see the urology team at the hospital and have a urodynamics test done. Original appointment was for October, but between then and now, the hospital has cancelled and rearranged that appointment EIGHT TIMES, and on every single occasion I've received the letter either the day before, or the morning of the appointment. To get back to that hospital, its value 6 hour round trip!! I asked this new continence nurse if she can refer me up here, and although she was shocked at how many times the HOSPITAL had cancelled my appointment, her exact reply was "wow, really?! We can get people in to see the uro/gynae clinic up here in 2 week." When I asked her to refer me she said "No, we try several medications first before referring people".

I'm so pissed off, what is so difficult to understand, about the fact that NO medication is going to help me!! No medication that's designed to give me "more warning time" is going to help, when I have NO bladder sensation to start with, thanks to a damaged spinal cord!!

She didn't even believe me when I told her that the 3 uti's I had late last, I didn't even know I had until they'd reached the upper urinary tract and was going into the bladder itself. I had NO burning when I peed, NO pain in the stomach. The first I know of it was when I woke up in the middle of the night with a fever, shivering and violent vomiting. I'm seeing the doctor who diagnosed all my uti's next week, so I'm thinking of asking her to write a letter, confirming that's what had happened. If the nurse won't believe me, at least she'd hopefully believe the doctor that saw me at the time and diagnosed it!!

I totally understand, I have nerve damage myself, it took a long time to get a great medical team together. I had copies of my file that I took with me to doctors visits to confirm what they would ask as question. Thank God I don't have to do it anymore, but to get all the doctors on the same page will drive you crazy if you don't have all the information with you. I know its a pain but have a copy of all info on your case and notes from doctors with you on your visits.