www.incontinentsupport.org

Hi 2lyle,
With both my GP and Urologist,its a sin.NO constipation,I take daily dosages and like today had a moderate bowel movement.So I will have to use a enema probably tomorrow if it doesnt get better.So sorry you have the issue of either it swings one way of the other.I never have that.Yes,I eat veggies and fruits and try to eat what helps me go.

Wow,yes you will be really going with all the fluid going through you! I also take Hydrochlorothiazide 25 mg per day,so understand what it can do,but with the foley it doesnt matter as much as it did without it.

I see you have been a loyal customer to a Gastrologist,and my Dr is encouraging me to see one,but I have stalled on it,I know in time he will get his way,but I know once I start going to one,then they will have their hooks in me,and will have to go like you do.

Yes,I have been very lucky not having infections.Guess I have great resistence and that is a good thing

Not sure what to tell you on the blood thing,I have only ran into that once,and it was because the Nurse inflated a foley outside my bladder neck!She felt awful,and so did I! Yes,its hurt like crazy,and I bled till that evening some,but was fine the next day.
Can you be without a Foley any length of time? A friend likes to leave one out for a couple days trying to empty out stones,but he stays home,as he now is fully incontinent.He doesnt have retention.So I would have to self cath,and that would be rough,as I suppose my bladder is so small now
Lynnan

Hi Lynnan:

When I first came down with CIDP diarrhea was my first symptom and it was running ramped. That along with urinary incontinence it was not only terrible to go through but embarrassing.
I went to many doctors and hospitals trying to find a cure but none was found.
Finally I went to a neurologist who ran a test EMG EEG which showed I had sever nerve damage.
From there my new Gastrologists did his third barium enema test then a colonoscopy and found red blotches in my colon and said I had colitis but the biopsy said no but it could be crones which thank heaven it was not. So here again no diagnose except nerve damage official diagnose I have IBS.
It was agreed on to live with the constipation which I have for the most part but like I said I eat a lot of fruit now and since my hemorrhoid operation and all the laxatives I had to take before and after the operation lately I been maybe 99% OK.

Today I had my first IV and it went well three more to go. My blood pressure use to go way up but since I been using a Foley it’s been good the Foley helped a lot. But on occasion it will still go up so I am on Lasix and Hydrochlorothiazide and did I pee.
My doctor thinks I retaining to much fluids so we will see.

As for going without a Foley I can’t answer that. In a year and half I have never had one out long not more than 10 minutes or so.
Last month was the first time I changed my own catheter and I did leave it out for several hours but I got so much pressure I put in the new one. I have a hard time urinating on my own.
I suspect I could leave the Foley out if my hands would corporate I could self cath but then if I could self cath I would still be doing it.
I don’t mind using a Foley it makes urinary incontinence somewhat easier it is the long term side effects that can occur they scare me.

2lyle

Hi 2lyle,
I dont envy you having what you have had with your colon,I dont like what is going on with me but,least I dont have the risk of contamination you have or had of your catheter.
I'm currently fighting a bout now,and its a struggle when you take all this oral stuff they want you to take and it doesnt work,and they want you to take stronger doses! I feel I will need to deal again with this rectally.

I can see according to you what is facing one when going to the gastroentrologist,but I wonder if they still use the Barium Enema?
I'm also trying to eat right,and its not always easy,but keep trying to do the right thing.
I guess you just got to keep trying,and yes,they will keep doing tests I'm sure,that will never stop!
When I talked about the Foley and taking it out,a friend I know would leave out for a afternoon or day,and let his bladder clear itself of stones and debris.Not sure if I could do that,I think risky,and I did ask my GP when I was there yesterday,and he said the best for you is to take one out,and insert another,just like were doing,,and comeback to me in a month!
Glad your blood pressure didnt spike with all those fluids.
I have also accepted my longterm use of the Foley catheter,it is to me much better then self cathing,even my GP said yesterday,you are much better with the Foley.
Lynnan

Hi Lynnan:

Like I said my bowel problems are 99% under control and I don’t know why.
I do eat lots of fruit which helps with constipation and I use softeners and laxatives plus enemas when needed and I say that because it is a crapshoot (excuse the pun) which way to go.
This is my way of doing things doctors didn’t help much.

With going to so many different doctors I get a wide verity of opinions of why. I believe my neurologist is correct bowel problems are caused by my disease neuropathy. When I had my last Barium Enema test (and yes they are still used) they saw my large bowel spasming like they never seen before or so they said.
This is a very complicate involved diagnoses but it comes down to nerve damage.

Be glad you don’t have bowel problems and yes I do worry about contaminating the catheter.
I did ask my urologist what if and he said clean with water he didn’t seem to be alarmed at all which surprised me. So far in a year and half it only happened once I am not going into details.

I think with going to doctors the best is to have a good Family Doctor first one you trust.
He should keep track of things so one dose not get over tested. That is the way it should work but it doesn’t.
My Family Doctor did send me to the first Gastrologists he kept running test after test then wanted to do them all over again so I found another one and made my own appointment. He did some test that were not done but could not give me a good diagnosis.
I also went on my own to a neurologist several years later he reviewed all the previous test then ran his own and that is when things started to come together diagnosed neuropathy.

Yes it was worth going to so many different doctors and through all the tests in the long run helped one doctor tied everything together the neurologist.

I thing I would have to agree with your GP from my limited experience with changing catheters. Like I told you when I changed my catheter I did leave it out but in a couple of hours I had to put in the new one I was starting to hurt. When I got the catheter in and set up I did have a lot of pain I never had before.
I don’t know how to explain but here goes I believe a catheter makes its own path and when left out for a time this path starts to heal then the new catheter has to do it all over again.
My urologist told me when changing the catheter to get it all set up ready to insert then pull out the old one and insert the new one.

When you were at your GP did he put in the all silicone coted catheter and how does it feel?
Now that I have the all silicone coted catheter I like it, it is very comfortable.

I didn’t find self cathing to be that bad and if I could I probably still be doing it.
If we need a catheter one has to except it like it or not.

2lyle

I kinda dropped out of site,guess all this kinda overwhelmed me,lots of changes here,incontinence is worse,I'm back to selfcathing,I like that,but worried about it too.Also having trouble with prostatitis and its ongoing,currently I'm diagnosed with a Flaccid Bladder,with incontinence.Where do we go from here.

Lynnam

Glad to see you back but not because your incontinent is getting worse.

Your diagnosis is the same as mine a flaccid bladder.
I wish I could give you good news of where to go from here you are already self cathing.
As I put it in previous post I now use a Foley catheter 24/7 going on three years now.

From what I understand there is no cure for flaccid bladder catheters is about the only way we have to go.

Good to hear from you again
2lyle

Hi Lyle,
I ache today again,Dr thinks I have ongoing prostatitis, plus my other issues,its a dull headache I have in my bladder today.So more blood work next week,then into the urologist the next week! I'm sure you understand
Lynn

Hi Lynnan and Lyle

I am new to this group and have been reading your post we all seem very similar. I have been having problems since I was 9 years old had a blockage at c3 the dr operated and moved the bone putting pressure on nerves in that area. A little over a year later it happend again this time when they went in the removes some of the bone. Both times I was paralized from the neck down but did recover. After this is when I started having bladeer problems and wet the bed. As I entered my late teens I started to get some dry nights some times lasting for several months then would have problems every night for weeks and this continued up untill about 10 years ago. I started wetting every night and about two weeks latter started having day accidents as well. By the third week I lost all control and diaperd 24/7. This continued for the next 5 years as the doctors were unable to find anything just described it as nerogenic bladder. Then I started to have numbness in my left hand and noticed that my left side seemed to be getting weaker and I started to limp. Went to a nerogolist and he did many test but did not find any thing after three years going to him my nunbness got worse and so did my limp so he ran the test again this time it showed something in my spinal colm c-3. It ended up being a blod clot inside the spinal colm. It ws removed but had damaged the spinal colm. the damage done could not be fixed which has left me with weakness on my left side. The damage aslo caused additional damage to the nerves controlling the bladder I had no feeling when I was full and then lead to retention and I could only let out a little at a time having to go every 15 min. I self cath for about two years but and hour ot 45 mins I would have to go aging and would go every 15 mins till I self cat again. Talked to the dr about a foley cath he was very reluntant to let me try it. But he was also not in favor of diapers. I told him I want to try a foley and see if it would help. It did I did not need diapers with the foley. And when I decided I was going to stay with it the dr recommened that I have a Super pubic done. I waited three or four months then decided to have it done and it was one of the best things I did. I have not had any problems with it and it has been 9 mos since I had it done.

Hi catman

Sorry to hear you have so many problems for so long.

You have had a rough time of it especially at that young age. My incontinence started in my 30s it just came out of the blue.
At first my wife and I just blew it off only going to my family doctor. But then a few things started to happen I had numbness in my legs and terrific pains in my upper legs putting me right down on the floor in a mall I was also having bowel problems.
I went to a neurologist ho fond nothing so I lived with it for a while.
I am going to make this short but I had knee surgery which I did not come out of well and in a couple of years I had another one on my other leg just made thing worse. In therapy I was not doing well and could not get my strength back.
Back to the neurologist he ran test again EMG EEG and found I had CIDP. Google it there is so much on it.
I am numb all over feet to hips hands to upper body my face is also numb even the inside of my mouth.

But things went bad from there. For my CIDP I been having IVIg it is an IV treatment supper way out of sight in cost. But during this IV my blood pressure would shoot up my neurologist ordered a Foley catheter for a week of my IV he felt I was not getting rid of the excess fluids from the IV.
The nurse inserted the Foley and drained some 1800 to 2000ml of urine I was sent to an urologist. He started me self cathing.
I also was self cath for two years not having a lot of luck. My urologist does not like Foley catheters but he gave me the option of using one and I took it. The first year was the pits I had infections one after another. I then started to put in my own catheter at home taking antibiotics after cathing for three days and I have been infection free until now. This was my urologist idea he said I have less germs at home so cathing in my own home less chance of infection. It has helped no infections in a year then I got one and just getting over it now.

It is not much fun using a Foley but I do like it much better than other options.

How do you like a suprapubic catheter?
If I understand my urologist in time I will need one here again he is not a fan of a suprapubic unless called for.

If you want to talk more e-mail me
I have a lot of questions about a suprapubic.

2lyle

Hello Lyle and Catman,
Glad your both here,and we can learn from eachother,I know I have learn so much about my condition from both of you,and that makes me feel much better.One thing is for certain,as Catman told me once,you will be going to the urologist for a long long time! And was he right!
lynn