www.incontinentsupport.org

Sorry to hear things are getting along so well. I have a tip for you for when you next have an appointment - write a list the day before of all the things you want to mention or ask, with the help of your wife. Then, at the appointment, go through the list a line at a time and you can't forget anything.

Saturday August 23: that's what I bring her for, Wheels!! She's so organized and thus she doesn't need to write things down plus being a nurse....she knows all the right questions.....I'm just a guy who runs into burning buildings.....so I haven't written in a while. I even made it nearly 2 weeks without being catheterized!! The longest stretch in the summer of the Foley catheter......I had a few to drink at an annual event I like to enjoy and had quite a night with many friends I don't see often.....the wife drove me home and put me to bed, when I woke up in the morning I found that she had placed a foley while I was feeling no pain......that was pretty nice of her, so I wasn't up all night. That was the first foley I had in nearly 2 weeks. We were going in vaca a couple days later so she just left it in so I would be comfortable for the 2 hour car ride. She took it out at the hotel so I could swim in the pool. That turned out to be a mistake. I was miserable for the 2 day trip and the 2 1/2 hour rode home. Her grandmother fell ill while we were in vaca so we had to cut out trip a bit short and head for her hometown to see her grandma in the hospital. We had to make multiple stops along the way for me, additional I was having a real hard time with being incontinent....many small accidents.....we were at the hospital for several hours (3 hours I think) I peed like 9 times while we were there.......
Yesterday I had the first 2 of 4 MRI's scanning everything from my brain to the base of my lumbar spine. I had to have a foley for that because I can't lie there for 2 hours without having to pee, I'd be miserable........so I still have the foley but it's coming out either tonight or tomorrow because I have to go back to work.....vacation season is over for me now.....no more vaca till next summer.....Monday when I get back home, she is going to cath me again for the next MRI session, then that comes out because I'm going to work again for 34 hours on Tuesday......so it'll be back to pull-ups and pads for work. I've been in diapers 24/7 if I'm not in a diaper I'm in a pull-up with a pad for reinforcement. I can't tell you the last time I left the house without protection on.....I don't dare....my confidence is shaken going anywhere without protection......anyway....still no word about going to Mass General. I had to cancel the appointment because of a lack of child care. I don't know if I'm going to reschedule it. I'm frustrated and sick of having a rigid schedule of doctors appointments always looming over me. I guess we'll see what these MRI's show before we revisit making a pilgrimage to Boston.....that's what's up lately.....

Monday August 25: sitting around at home waiting for the second round of MRI's today it is the Thoracic spine and Lumbar spine, with and without contrast. It'll be another 2 hours in the machine. I don't have the foley in right now but am waiting for the wife to come place the catheter as I can't sit still for 2 hours without being seriously uncomfortable. Had a 24 hour shift at work yesterday and was good all day. I only went about 6-7 times during the day but after dinner into the night I was peeing every 10 minutes. My final number was 22 times for the 24 hour time period........today since 0800 I've gone about 10-11 times and it's barely 1400......been very active despite mowing the lawn and sweating some of it out......so looking forward to having this MRI over and hopefully having some answers. This is all getting pretty old......but I'm trying to make peace with the fact that I may be living with this for a while....

Have you and your Uro ruled out a possible prostate issue? I know for myself, when I get a flare-up, my urge and frequency go through the roof, something to look at? Hope you get some answers! Puffy

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Puffy
BC, Canada
Fighting the "Bladder Battle" since 1995

Tuesday August 26: Puffy, thanks for writing, I've had 4 rectal exams and 2 cystoscopy's they seemed to think my prostate is "small" and "unremarkable"
Today I am very stressed, the wife and I aren't getting along too good. Seems like she's always got something more important than me......except,when I need a foley, then she comes running, I never have to wait for a catheter when I am miserable. I'm grateful for that. She's told me that the diapers are a turn off....I can't help that really and coupled with the fact that I'm having a hard time with this whole condition and the lack of answers......diapers and catheters are my "GO TO" solution. I am feeling very alone, unimportant and unattractive......the MRI went ok yesterday, looks like all is pretty near normal from my brain down to my tail bone......so, that's good, that I don't have a brain tumor or any masses on my spine but, I was kind of hoping for some answers......I'm at work on a 34 hour shift and my heart just isn't really in it today........ Seriously wonder if this is all "in my head" there seems to be no medical reason for it......but there's a wet spot in my pad that says I'm leaking........ok.....I guess I'm incontinent.......I don't like that word......by the way, I put out 1000ml into the foley in a 2 1/2 hour session......I had (2) 8 oz glasses,of water before I went because I was thirsty.....she was like WOW this thing is heavy. She would hang it off the bed/table for me when she came in the room to help it to drain so it wouldn't back up.....very nice of her. I took the foley out this morning before I came to work.....did it all by myself even though I don't like to do anything with it.......anyway, that's what I've got for today

Have the two of you thought of going to a marriage counselor? Not that you are heading for divorce, but both of you are dealing with very life changing issues.

The reason I say this is because; while we all hope an answer will come, and with it a cure; there is a strong possibility that you will not get an answer as many with OAB wet do not have a tangible answer as to why. She might find the diapers a turn off, but a foley is not a good long term solution unless absolutely necessary due to the risks of UTI. I cannot remember if you mentioned trying a condom catheter. I personally could not stand it and my skin got irritated so I prefer diapers, but perhaps that is a less emasculating option for you.

She is good to you in that she is honest in saying the diapers are a turn off, but when you got married it was for better or worse. She needs to ask herself the very real question, "If my husband never finds a cure, and is stuck in diapers forever, will I ever find him attractive again?" One would hope the answer is yes because any one of us can be robbed of something physically and have to deal with it for the rest of our lives.

What have you been doing to help her with her new problems? What have you done to make her less stressed about her issues. Sometimes, we can lessen our own misery by focusing our attention on making someone else feel better.

Also, depression can be contagious. Your misery of not finding an answer or cure can and will rub off on other people, especially your wife. As hard as it might sound, try to cheer up and look on the bright side. So long as this does not turn out to be cancer or life threatening, this, while annoying, is a livable condition.

But I strongly suggest talking to a therapist together. Grief counseling specifically, as you are both grieving over the you you were before and need to overcome this pain and struggle together.

I hope your day goes better, and know that we are all pulling for you!

PB&J,

My suggestion about your wife is to keep the communication open. It will help get you on the same page and in the end, get you closer. If you put yourself in her shoes, you can kind of see where she is coming from and how it can make her feel. You need to talk to her so she will also we your point of view on the topic of diapers. I had this talk with my wife as well (although she never got overly vocal about it being a turnoff) and we made all the disisions together and chose the best option for us. We had catheters on the table and agreed it was not good for us because sex with a catheter was almost impossible. We also talked about the suprapubic catheter but we both did not like the idea of having a tube sticking out of my belly and the limitations it would cause was not worth it.
When we both agreed on diapers being the lesser of the evils we bout put our input on which type and brand. It was mostly my choice but I did get her input. This is the line of communication you guys need. Then she will see you are making the best move for both of you and she may feel like she has some control over this hopefully temporary point in you life.

Very well said, as usual, Rope.

PB&J, my husband's intolerance is the sole reason that I use pull-ups - I've tried to look as "normal" as possible in bed and in front of him. Now that I need the heavier protection of Abri-Flex during the night, I look a lot more like I'm diapered than I did with lighter-absorbency pull-ups. The bed is no longer getting wet, but he's still disgusted.

Wetters

Wednesday September 3: Well, sorry for the rant last post. I was having an incredibly bad day......the wife and I are getting along ok. We do have a happy marriage with only the normal marital ups and downs. She doesn't make a huge deal about the diapers being a turn off every day but has made it abundantly clear she'd be happier without me in diapers.....I think she likes cathing me better than she likes having me in diapers.......As far as the lines of communication we try to keep them open but with two boys 4 1/2 and 3 years old, it's nearly impossible to talk uninterrupted. Her main focus is usually on them. I tell her that the spouses need to out each other first for a happy marriage but it usually falls on deaf ears....anyway.....I was in the middle of a 34 hour shift at work when I spiked a high fever in the middle of the night. I felt so sick but I had 18 hours left in the shift. So I got through the rest of the shift with every minute feeling like days. Finally I got home and got the wife to take me to the emergency room. So I spent most of Saturday night in the ER. They took blood and urine and of course because of my history I got a really awesome rectal exam.....he said my prostate was mildly enlarged, otherwise they weren't able to find any problem so they told me it was viral. While all this was going on, it drove my symptoms crazy. My incontinence was worse, urinary frequency was through the roof at nearly 40 times per 24 hours and the urinary hesitancy was awful too......I had to go so bad but couldn't get the stream started. I was going about every 20 minutes and no more than an hour without a pee break.....while having a fever of 100.0 or so. I felt awful and I was at work!! She put my foley in when we got home. I didn't ask for one at the hospital because as uncomfortable as I was, I sure didn't want the male nurse doing it!!! The rectal exam was bad enough!!! So she put it in when we got home and I slept great that night. Sunday I awoke afebrile. I still felt a hey but did a few errands and chores. Fever came back at dinner time and so I went to bed and I was so tired I slept despite the fever. I've been fine ever since....the foley is still in 3 days later. We are leaving for the Berkshires in western Massachusetts because my wife's grandmother just passed away and we have to travel 3 hours for the funeral. I had to have a foley for the ride anyway so she just left this one in for the trip down......we'll see how it goes. Apparently were staying in a house that her family has rented down there so that'll be a bunch more people that will now know about my incontinence, it'll be close quarters I'm sure and catheters and diapers are hard to hide.....

I am so sorry to hear about her passing.
My prayers and sympathy go out to you and your family