www.incontinentsupport.org

So here is an update on my story as of today......some of you have been following my story but I will start sort of from the beginning. I am a 32 year old male. I have no health problems other than some anxiety to speak of. About 4 months ago I started going to the bathroom what I perceived to be a lot of times....so I started keeping track. At the time it was 12 times in a 24 hour period. My research indicated that 4-8 was normal. So I went to the primary care doctor and he was shocked at 12 times per day. He referred me to a urologist, in the meantime I started having small incontinence/wetting accidents after I urinated (post-micturation dribble) it was anywhere from quarter sized to grapefruit/lemon sized but could rarely be seen on my outer clothing. The wife always noticed it, though. I started wearing diapers/pads/pullups. I bought stuff online, in stores, wherever just trying to stockpile protection. I was wearing once in a while when things got so they seemed bad....around early March, I pretty much started wearing full-time some sort of protection. Even to my job as a firefighter, which is a very active, physically demanding job. The frequency gradually got worse and now I was in the 15-18x per day range. I was having accidents multiple times per day. All the while I was getting up at night multiple times to pee, distrupting my sleep and the sleep of my wife. My first urologist was an asshole and I didn't like him from the start. When he saw my Depend pullup he was like "Why are you wearing that??" very pointedly..... and Then he was very to the point that he thought this was all anxiety related. I didn't appreciate that. So he ordered the cystoscopy and then he did the uroflow test and wouldn't share the results with me. He was an asshole.....he prescribed me vesicare, which worked for a short time then stopped working abruptly. So then I went to see the new urologist a month later after dealing with all this and the return of what I and they thought might be Overactive Bladder. the new uro was older and real nice, he prescribed Myrbetriq which didn't work after taking it for 8-9 days. They also drew countless labs, did countless urine specimens, 4 rectal exams. my PSA is .577 (remember I am 32) So on Saturday, Sunday, Monday, the incontinence got pretty severe for me, I started to be able to smell the urine (smelled like a nursing home....yuck!!!) Monday along with the incontinence I had really severe urinary frequency I went 15x in the 10 hours between 0800 and 1800.... I was calling the uro office to tell them that the Myrbetriq wasn't working as they had told me to do if it didn't begin to work. I explained to them that the problems had taken a turn for the worse and that I was quite uncomfortable. She phoned the on call urologist and got back to me. They told me to go to the hospital ER and have a foley catheter inserted. When my wife got home from the ER she works in (shes an ER nurse 45 minutes away) I told her that we needed to go down to the ER to get a foley.....she took me down there (she used to work there years ago) We went in and got evaluated by the ER physician who had worked with my wife. He asked me if I wanted a catheter, I chuckled and said, do I want one?? not really but the uro office wanted me to come down here and get one....and I'd be alot more comfortable if my wife could insert it!! He said he was ok with that and the nurse in the room said "I'll go get the supplies!!" so she dropped the stuff off, my wife said give us 5 minutes and the whole thing was over.....I am glad it was her and not some stranger that did it. Very uncomfortable no doubt. Today, I had a follow up appointment with a urologist, now the third different doctor, but in the same practice as the second doctor. He said he was very concerned and that "this is bad" He wants me to see a neurologist asap, he also wants me to do a urodyamics test and repeat the cystoscopy I had in April. He also saw me with a tape on diaper for the first time. I usually go to appointments in pullups but the tape ons work better over the foley....of course, I got the rectal exam.....again......He also was like leave the catheter in for a month, but I told him I am not wearing it to work. So they gave us catheter supplies to take home so my wife can cath me when I get home from work.....sounds like he wanted me to have that in for comfort.....so I came home with the foley....I am feeling alot of stress about this...more stress, more waiting.....thats my story....sorry its so long.....If I get out of this with any shred of dignity left it'll be a minor miricle.....

Hang in there.. I really don't know what else to say. You do have someone at home that can help you with this.

Scott

Thank God for my wife, Joanne....I have no fucking idea where I would be without her....she is an ER nurse, but she is a beautiful woman as well, inside and out. I am very fortunate to have her.....this has been a rough day....I am glad she is here by my side....there is nobody else I would want here with me while I deal with this.....

You seem to be suggesting that you are wearing diaper with a Foley catheter. Usually, Foleys are worn with a collection bag that can be strapped to your leg. I've read several places that placing the outlet of the tube from a Foley in a diaper instead of connecting it to a collection bag heightens the danger of getting a urinary tract infection.

BE CAREFUL! Follow exactly the instructions that you receive about how to use your Foley catheter. Urinary tract infections can be very dangerous.

I think it is just to catch the leaks. The fact that there are leaks suggests it might not be the appropriate size catheter. I tried the catheter route and could not stand it. The pain always made me remove it inside of two hours, and by pain, I mean my urethra constantly trying to expel the foreign entity from my body. It felt like it was internally pulling at the catheter and thus making me feel like I had to pee, but obviously I couldn't due to the catheter. I can see why you do not use a foley while working.

My skin seems to be too sensitive for condom catheter adhesive because I reacted badly.. Also, one popped off at a bad time.... This is why I stick with diapers.


But more on point, PB&J32, your dignity, self-esteem and value of a man seem to be constantly assaulted by this. You are a fireman, which makes you a hero in most men's eyes for what you do and what you risk. The emasculation of this condition might feel like it is ripping that from you, but it is not! You are still a hero. You are still the husband of your wife, and even if there is no cure and this gets worse that will not change. You are still you!

It is also likely that your mates in the firehouse may or may not ever discover this, even if it gets worse. But if they do, own your condition. You didn't choose it and you have been seeking treatment. Like as not, they will feel horrible for you and that's it. After a few weeks of you still doing everything you do, they will no longer give it much thought except to either worry for themselves or be grateful this is not something they deal with.

Thanks guys, much appreciated for all the kind words. So, it is Friday afternoon. I've had the foley in since Monday night. It's been a wonderful thing, I have slept through the night and I'm waking up feeling like I have some life left in my body......before, I would wake up and just feel dead.......I am wearing a diaper over it to catch minor discharge, mucous, etc....I don't believe I am leaking around the catheter except when I am having a bowel movement and I am straining. I have a 16F foley in.......I am washing my hands and equipment regularly as well as showering AT LEAST once per day (many days I'm showering 2x per day) and washing carefully with soap and water.....wife is being supportive and I'd really be screwed without her. She changed me from the bedside bag to a leg bag yesterday so I could go out. I was able to change back to the bedside bag at bedtime last night after my nighttime shower.....had some blood in the foley bag last night but was pretty active in the evening. I probably overdid it. I haven't seen anymore blood last night or today. Urine is nice and clear, since I'm not running to the toilet every 15-20 minutes I'm drinking a lot of fluids (water and Gatorade ONLY) though I did enjoy some beer the other night because I knew I wouldn't be up peeing all night. I am back to work on Sunday for a 34 hour shift (Sunday 0800 till Monday @1800) so the foley will have to come out for that and I will use pads or pad/pull-up combination depending how my incontinence is after the foley is removed.......anybody have worse incontinence after having a foley for a bunch of days???? I don't know if giving the muscles a break will cause problems when the bladder actually has to store urine.......

PB&J32

Having blood in small amounts is part of using a Foley catheter. You may also see small blood clots most of the time this is nothing to be concerned about and after you use a Foley the bladder will toughen up and you will see less.
But with you only using it for a couple of days than back I don’t know this for sure.

I have been using a Foley 24/7 for over four years and am doing very well with it I use an 18f.
When changing a catheter that is the number one way to get an infection great care should be used. With your wife being an ER nurse you are one up on most of us.
I change my own catheter every three weeks. I find it hard for me I have CIDP a type of neuropathy and my hands do things without command but I seem to get it done I been infection free for three plus years.

When you first take the Foley out you may experience some leakage but you have a small catheter so I drought it will be too bad and within a couple of hours it should subside.

I use a two balloon catheter one balloon covers the pointy tip of the catheter to protect the bladder I have not had any bleeding in many years.

Bleeding and catheters go together if you have a large blood loss or continues bleeding call your doctor.

Lyle

Well, the wife took the foley out tonight as I have to go to work in the morning. No more blood since the small amount seen on Thursday night (very small amount and cleared right up after drinking some water) everything went well. I had it in for 5 days. I'm actually a little scared to have it out because I am not sure how the next 2 days at work are going to go.......I guess I can always have her cath me Monday night when I get home. I will keep you all updated. I have urodynamics testing on. Friday and it sounds like they are going to put the catheter in my bladder and in my rectum......not too happy about that but.....looking forward to getting some answers.....

at work on a 34 hour shift, wearing a pad/pullup combination, frequency is on track to be the usual 15-18x per day, pretty much like clockwork.....some light dribbles and small accidents but nothing abnormal......Seems like some days I have a lot of accidents and some days I have just a few.....wish my body could make up its mind......tests on Friday are weighing on me.....

Don't let it worry you PB&J32, the tests are nothing worse then having the catheter put in, and you managed that fairly well from the sounds of it. I don't think I could have one in there for a day,let alone multiple days or weeks, no0 thanks! I hope you get some answers from the Uro and tests! Puffy

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