[Kelly]

Hi all,
I am currently experiencing a level of urine retention. I usually can't control when I go...Well I guess I still can't, except now I'm not going much at all. I am drinking a ton, so it's not like I'm dehydrated.That's the first thing my PCP asked me. I actually had a bottle of water with me so that I could show her how much of it I had drank. I also told her that for the last 3 mornings, I have awoken with my diaper completely dry, which is not normal for me, and she knows this. This sent up a red flag for her. I also told her that I am swelling and she looked at my legs. I have had an area that periodically collects extra fluid since I had surgery to remove my gall bladder. I have lost a considerable amount of weight recently and so the fluid sac has gone down considerably as well normally. It looks like it did when I weighed much more. She thought so too. When I went to the doctor today about it, she set me up with a local urologist (My usual uro is an hr. away.) I can't go there right now, but my PCP told me to call the clinic and set up an appointment for a follow up after my visit with the local uro, have him send notes etc. I have had to have a foley cath once before for 3 days. My doctor and I both feel that it is in my near future. My appointment with the local urologist is not for another 8 days. This was the soonest they could get me in. There is a foley in the storage closet at my PCP's office, so if needed, I do know that I can go there and have it placed before the appointment. My PCP will place it, and have it stay in until the appointment. I was just wondering if this was normal for people with a neurogenic bladder? I have had this diagnosis for awhile, but I have never really seen anyone who goes from one extreme to the other. Usually it is either retention, or incontinence, but not both. Am I just strange?? Just looking for anyone with this diagnosis who can shed some light on this for me, thanks.

[SeattleDoug]

Not sure what to tell you on this one. Good luck and I hope things get figured out.

[Kelly]

Well, I did end up having to have a cath placed. It is in now. Lumbar spine MRI Monday, as I have an injury to the area responsible for bowel/bladder functions and I am having trouble from my bowels too. I was given Miralax. Will let everyone know. Thanks.

[Darin]

Yuck. Foleys are never fun. Hope they figure it out.

-Darin

[Kelly]

Just posting a reply to let everyone know that the cath is still in place and that they are repeating the tests I had 3 years ago since it's been so long. A voiding cystourethrogram and a urodynamics study. Until then, I still have my buddy. Getting very tired of it. I would rather change a wet diaper at this point than empty a bag. At least diapers are more comfortable!

[Darin]

Make sure you drink lots of cranberry juice (or take the pills). Usually helps prevent UTIs that are a big risk with foleys.

-Darin

[Kelly]

The cath is out. I had an almost constant infection while it was in. It was removed yesterday. I was able to void enough for them to leave it out. (They had attempted to before 3 separate times.) It has left me with absolutely NO bladder control. I get about a millisecond warning that I have to go before I do. It is also really hard to sit on the toilet right now, because of not being able to move very well because of my back. So, even though I have a commode, it is just easier for someone to change diapers. It has been really hard having help changing my diapers, as that is something I usually do independently. But, I have had a really difficult time moving, so I need help right now. Just wanted to update.

[SeattleDoug]

Thanks for the update. Hand in there. Hopefully that will get it all figured out.

[Kelly]

Mike, on 23 March 2010 - 04:09 PM, said:

Hi Kelly,

I too have neurogenic bladder due to a motorcycle accident over 10 years ago. I feel for you as it can be very tough to live with!

I am unable to cath due to the constant infections so I use diapers to control the incontinence. It took awhile to adjust to "wearing protection" especially due to both bladder and partial bowel incontinence. The bladder control is very straight forward, but the bowel issues are the worse, but I always tell myself that life can always be worse.

Hang in there, and feel free to chat with me anytime. I added you on facebook!

Hi Mike,
I accepted your request on facebook. I usually have the incontinence side of things. Urges hit, and I can't make it about 80% of the time. My mother, who should be the most supportive, is ironically the least so. I think it is because even though I was dry completely for years after being completely trained at the age of 5. I was trained in the day at age 3, and night at 5. She just doesn't understand why they attribute it to my cerebral palsy if it was not a problem all my life. However, I did find out by chance that I have a mild form of spina bifida, so the home health physical therapist is saying that some people with spina bifida are asymptomatic until later in life. So, I am wondering if THAT in combo with the CP is what causes the neurogeinc bladder. Today, I had an appointment with a neurosurgeon, and soaked my diaper 3 times while I was at the hospital. She said "Don't you even try to go to the bathroom? Hello...I just got a catheter (foley) out a week ago today, and don't normally have that much control anyway, one can't expect miracles. I am not emptying completely right now so I leak almost continuously. I do sit on the toilet, but it is very hard right now, so mostly I just end up changing wet diapers. So? At least I don't have a tube right now! None of my doctors are surprised at the level of control I have right now, so why is she? She just doesn't get it. All of a sudden when I was 19, I started wetting the bed. Eventually, I had to start wearing protection 24/7 in 2005. I just started back on a preventative antibiotic when I saw my urologist recently. They are going to discuss CISC further at my next appointment in 5 weeks. However, I don't think I have the dexterity in my hands to do it myself. And certainly can't expect my mom to do it. She just doesn't like the idea. I prefer diapers myself, as I think I would end up with infections too. I am VERY prone to UTI's. Hope to chat further either here or on FB.

[Mike951]

Hey Kelly,

I feel bad that your mom isn't more understanding. I guess I have been lucky as I usually don't get anybody saying anything to me at all (must be all the tattoos....lol).
I did have one Urologist tell me to go and empty my bladder just before she did an ultra-sound, and I looked at her like she was crazy, if I could empty it on command I wouldn't be wearing diapers, and she acted annoyed when I told her that?!

I just wish the Doctors would just come out and say they are lost instead of putting some of us through so many tests to end up with nothing. I have seen so many "specialist" and I realized to stop getting false hope, and just enjoy life.

[Kelly]

Mike,
I hear you. It is not "socially acceptable" for a 27 year old intelligent adult woman to wear and use diapers. My PCP is actually more understanding of my desire not to live in the bathroom than what my urologist is. In her eyes, I need to be using the toilet whenever possible. But, that would mean being in there about every 30 minutes, and I just don't want to be doing that. I had a bladder scan done yesterday to check for post void residual. Thank God it wasn't that much only 71ccs...Their standards for self-cathing are any more than 125 ccs. Everyone is telling me that it will give me another tool to manage my bladder, but it would also mean nasty UTI's. So, I would have to agree with my urologist that if there isn't a need, why learn? Especially since I am so prone to UTI's. Sometimes, I can make it, but it is so uncomfortable trying that most times I just go when the urge first hits to avoid the spasms that go along with trying to hold it for a period of time. Maybe I'm wrong for doing that, but I hate bladder spasms. I am the one living with the incontinence, so it should be my choice how I manage it. I am ok with changing diapers (that wasn't always the case) but it's all the doctors that think it is the end of the world. If I am ok with it, they should be too.