www.incontinentsupport.org

Lyle, I was on 2400mg of neurontin but my nephrologist wanted me to cut back so I cut it in half. Instead of 600mg 4x, I now only do it twice a day. I didn't notice a big difference when I cut back, but I've been experiencing more pain lately in my ankles, but mostly at night. I've gone through various pain meds but right now, I'm only on gabapentin and cymbalta. It doesn't eliminate the pain, but makes it livable. My incontinence started when I was 4 yo, but it was very infrequent. During school years, I might have an accident once or twice a year. I managed to hide it from everyone, including my parents. It wasn't until I was 30 or so that it became worse and it has been getting worse ever since. Now I have frequent bladder releases and some bowel releases that happen without any warning. I think the fact that I can be continent for periods of time makes the diagnosis hard to nail down. I've had urological tests performed when I'm not experiencing any issues and all come out normal. All the Drs. believe there is a neurological problem but they haven't found a test to prove it. Mostly they just say it is diabetic neuropathy and it ends there. I'm going back to my neurologist next month to see if there are other tests that might be done that would confirm that diagnosis. I haven't had diabetes for 50 years so I feel there must be some explanation that would explain my progressive loss of continence over the years. I am pretty sure I don't have OAB, none of the drugs helped at all. I don't think I have a neurogenic bladder because my bladder does seem to empty mostly. My belief is my sphincters (both ureteral and rectal) are failing. I don't feel anything down there so I don't know when it is time to go. But there seems to be some short circuit or something that changes from time to time. Sometimes I get a slight "feeling" that something needs to happen very soon. If I'm near a bathroom, I'm ok, if not I leak. That is on good days. Other times, it just comes out and hopefully, I'm wearing a diaper or there will be a puddle. It is definitely getting worse. In years past, I rarely leaked. Now I'm having a great day if I stay dry all day long. I don't know why I'm having such difficulty deciding what to do. Do I just give up and wear diapers all the time and just let it happen? To me that feels like a loser. I don't like having big accidents especially in public, but I really like the time I don't wear diapers. You all have to agree that diapers are a big inconvenience, except cleaning up after an accident is much worse. That is my dilemma. Give up or keep seeking dry days? Has anyone else faced this question? Maybe most just became incontinent and there was no choice. That hasn't been my situation, but it is getting to the point where I can't keep control.

I gave up on bladder control when I was trying to time going every 2 hours and I would still have accidents. No matter how often I went my bladder would empty more frequently than the timing cycle. The only time it didn't is when I was retaining urine and needed to self-cath. Diapers can be an inconvenience and embarrassment, but I found it much more embarrassing to lose 500-700 ml of urine while walking through the food court of a mall trying to get to a bathroom. The public humiliation was enough to know that a diaper was my best option to manage.

I have been poked and prodded so many times, had to disrobe in front of doctors on many occasions, that it doesn't bother me anymore for a doctor to see my wearing a diaper. They only ask why once. This week I had to get an x-ray on my knees. The tech told me I could either take my pants off and get on the table of he could get me a robe. I told him I won't get embarrassed if he doesn't. He said he has seen it all. I took my jeans off and he got the images of my knees. He said nothing about my diaper. I said nothing about it either. I was not treated any different. The tech was professional and even joked a bit to lighten things up.

Don't get me wrong. I am not an exhibitionist. I just have bigger things to worry about than what others think of my underwear.

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When life hands you a lemon, make lemonade.

Don:
Sometimes doctors can’t find a problem maybe because it hasn’t matured yet. That was something my neurologist told me when he found I have CIDP. Just because you have a test now and it showed negative in five years the same test can show positive.

My neuropathy at first came on fast I woke one day with bowel incontinence no warning.
I went through many doctors just to get diagnosed with IBS. IBS back then was given when doctors can’t what is wrong. Today it is recognized as a disease.
Then bladder started so back to the doctors.
When I was at my neurologist the first time I think he helped me because he asked if I had tingling and pain in my feet and hands and I said yes I do. He said why I didn’t tell him that first. I said I always thought it was caused by racing motorcycles. Well form there is history.

But is my understanding if and you become incontinent do to neuropathy then it becomes autonomic neuropathy which is serious.

First please don’t take this wrong

But I read about all the people on here that say they have incontinences and don’t take it serious.
More people die from Incontinence especially retention incontinent and related diseases than neuropathy by itself it is a serious disorder. But people with neuropathy that die sometimes die from renal failure don’t figure.
Diaper users can come down with cancer from pressure sores get infections and skin problems. Foley catheter users can get UTI blood problems and ulcers in the bladder and urethra.

One note
Catheters have a much more chance of having problems than diapers but still?

Dangoch:

2400mg of Neurontin is a normal dose. Neurontin is one drug that is supposed to work for nerve pain. I was on it for several years I kept telling my neurologist I don’t think it is helping. We agreed to stop it we had to wean off slowly. When I stopped it all together man the withdrawals were bad and lasted for about two weeks.

From my experiences any drug used to treat pain has some withdrawals.
Last Tuesday I had a small operation in the hospital at 5:00am and back home at 12:00pm. The only problem I had was stopping Celebrex doctor orders I had sever withdrawals though I was dying but I made it.
The only other drug I stopped for a while is fentanyl. Fentanyl is many times stronger than morphine getting of it was just about as bad as it’s gets but here again I still here.

I was off it for several months and the pain kept increasing so my doctors though I should go back on it which I did some 10yrs or so. I have to say it does help.

Neuropathy takes on many faces and doctors just don’t know enough about it. But there are things your doctor can do or try one being what I receive IVIg (intervenes immune globulin). Second is Plasmapheresis third is drug therapy I been on all at one time or another and they do help slow it down.

Lyle

My issues have come on very slowly. It has taken about 3.5 yrs for my symptoms to develop. And it could still be my meds causing the issues. There is no way to find out. My incon so far is idiopathic. The doctors think it is my psych meds causing the issues but I need reassurance. I have to check out all avenues and rule out all possibilities. Please guys, don't be telling me about neuropathy's causing death. I have severe psychiatric issues and it is starting to get to me.

I really appreciate all the replies. Its valuable information. I just need positive stuff right now. Right now, I am afraid that I have an autonomic neuropathy and I'm terrified that it will be my end. I don't know how logical this is because I know very little about them. All i've read is that autonomic neuropathies are severe. But I don't know what is meant by severe. My mind is wandering though. And its not good!

Don:
sorry I did not mean to worry about death.

There are so many things that can cause incontinence and I don't know very many just what happen to me. It seams Evert thing I get is on the outer edge.
As I told you last Tuesday I had some hemroids removed.

I can say in my experience it hurts, it is the worst pain I ever had and I been living on pain meds.
Like I said things don't go well some times, I been on stool softeners and still no movement. I also still bleeding quit bad a lot more than I think I should have.

I also told you I have an iduelling catheter in me and today my bladder is spasmin. It feels like someone is pinch me inside my bladder. I am on meds for it but today it's not helping.
I know Foley catheters are needed sometimes I had one in for well over a year now by a doctors order. I hold so much urine it was starting to back up into my kidneys. Self catching is the way most people go and I did also at first. After a year of self catching my hands started to give me problems.
Talking to my urologists we decided to go to a Foley catch. He also told me how he hates them and all the problems that goes along with it.
I have a UTI every month so you can see what I mean everything I get is on the edge.

The only good part of using a foley for incontinence it's easy to hide it from friends I go out a lot more now than I did when I used diapers. It is so easy to use at night I don't wake up in a wet bed. My wife I think like it also she likes going out and the catheter is as close to being normal as it can be. With diapers I always felt like a baby. Before the Foley I used cloth diapers in order to keep the bed dry now she dose not need to wash them.

Don't take it wrong I feel that people that use diapers for incontinence are just tying to stay dry but I felt like a baby. I like being able to go out for dinner or move and not worry about leaking diapers or having someone see the budgets.

It is bad in today's world why people look down on people that need diapers. I would think with all the ads on TV people would learn.
Funny people on here say diapers are a bandage well with me leaking out my but I am using diapers just for that catching blood from the operation.

stay healthy
Lyle

I went to the neurologist this morning. I actually saw a PA-C and not a doc. The nurse ran some tests regarding blood pressure to my extremeties. That was normal as far as I know. She also did an ultrasound to check blood flow I think. She said that was normal too. Then I saw the PA-C. He did a nerve conduction study and EMG. Those tests revealed that I have a peripheral neuropathy. He didn't tell me much about it. I did some research on the National Institute of Health (NIH) and that revealed the peripheral neuropathies can effect continence. I spoke with Pfizer, the maker of Geodon (the drug I took for 1.5 years) and they confirmed that Geodon has been linked to Neuropathies. I asked my PA could my incontinence be linked to my neuropathy, he said he did not know. He is setting up an appointment for me to see the neurologist who is an MD and Ph.D. So he should be able to tell me if my incontinence is linked to my neuropathy. The PA says I definitely have one. Its just a question as to how bad and what systems is it affecting. My next appt. is on the 14th.

for me i had a cather for a while the leading hose got cauth an tug at that moment i saw god an cust the world out i take a diaper any day rather then a cather

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well ibs thats enought

I used to use cloth diapers, still have a bunch but I would never ask or allow my wife to wash them. It's my problem, not hers.

Don - I have peripheral neuropathy due to diabetes. I regularly go to a neurologist to help control the pain. I've been trying to get some closure on whether this is causing my incontinence, but am not getting very far. I've seen a urologist and he checked out everything down there and determined that I didn't have any abnormal things going on, but no indication of a cause of the incon. I went to the neurologist last week and my main issue was to figure out why my incon, but got a new pill instead. I'm trying to get a referral to Stanford University for more tests, but he wants to try this new drug, Lyrica. I don't think this will change anything, it is another pain med, which apparently caused 1 case of incon during the FDA approvals. My experience tells me that Drs don't understand incon very well, or at least not all causes. My urologist told me I'm on the edge of the Bell Curve so my case isn't usual. All the Drs tell me my incon is due to diabetes and they don't seem to want to try to go further. Not sure if that is because of insurance limitations or what. Nobody has even done any nerve conductivity studies of my bladder or sphincter, which would seem that might produce some answers. So I can feel for you. I want answers too but I get stonewalled. I'm trying, but it is a long process. I hope your neurologist can give you some answers, but I wouldn't get my expectations raised too high. Drs seem to either not understand incon or don't want to understand it. I get a feeling that Drs just want to sweep it under the table. I don't, even if there is no fixes, at least I will know why. Good luck.

Dangoch,
I have no nerve pain so far. I just have bladder and bowel incontinence and diarrhea. This could be caused by a neuropathy. There is no other excuse for my incontinence. I have had a urodynamics workup complete with CMG. A CMG is a nerve study for your bladder. Mine was normal. But my EMG of my legs and such was abnormal. Like I said, I don't have any pain. My doc is very curious about my case. The PA is stumped. He is consulting with the neurologist and I see him on the 14th. I think I mentioned before, the neurologist has a MD and Ph.D. So I'm hoping he can come up with something. I don't think the PA can help me anymore. I go to see him and he just asks has my incontinence changed. I tell him no. It is still severe. I don't know what else to do if this doesn't work. The PA said he is going to refer all of my results to the MD/Ph.D. so he can make a decision on my case.