KEDASO
Active member
- Joined
- Mar 22, 2009
- Messages
- 42
- Reason
- Loved one DX
- Diagnosis
- 04/2001
- Country
- US
- State
- California
- City
- Oceanside
Hi all--I haven't posted in a long while.
I hope all can be as well as can be expected.
I am pleading to speak to someone here, a male as a female will not have this problem,
who has a foley catheter.
I am having problems with the damn thing, that I know other people must have faced who have progressing body deterioration with a degenerative disease. In my case, that being advanced CIDP--the ugly sister disease to ALS. There are only 5% of people with CIDP where the normal protocol of treatment doesn't help put it into remission, and I am in that 5%. My body is slowly progressing downhill, and I am trying to hold off some imminent things to come in my future. I cannot ask this question over at the CIDP/GBS chat room, because there are so few of us with CIDP that are degressing towards the end, and I cannot replies since no one can answer some problems I run into as I go downhill.
That being said, I need to speak to someone with a foley catheter. I have one, and I am having a major problem with the damn thing. I am trying to hold off getting a
supra-pubic catheter, since I am getting weekly aquatic therapy to try to keep my legs from contracting. I am sure others with a foley have run into this, and need imput as to how they were able to help the problem, or is the clear answer being that I now have no choice but to get a supra-pubic catheter.
The problem I am having is ulcerations of the urethra due to having the foley catheter itself. I have no feeling in the groin area at all, HOWEVER, I do seem to have feeling "inside" my body, as this is very painful. I am required to have the catheter in the first place, due to as mentioned, no feeling in that area; a neurogenic bladder with incontinence. I have had it now for over two years. Having it for that time, I have a small amount of urine that comes out around the catheter, through the urethra, out of the penis. With the tube inside the urethra, the constant pressure inside is causing ulcerations. I use ointments, ("triple-antibiotic ointment", or an actual prescribed anitbiotic ointment), to push down inside the urethra at the tip of the penis, then tape a 4 x 4 surrounding the penis end, to keep the ointment inside. Occasionally, I will get a UTI, as is usual and expected, for anyone with a foley cath. But when I do get the UTI, it just makes matters worse, as the small amount of urine that comes out from around the tube is infected with whatever bacteria is causing the UTI, which then infects the ulcerations, and makes it even MORE PAINFUL. By going on an antibiotic, eventually cures the UTI, but also heals the ulcerations. But as soon as I am off the antibiotic, a few weeks later, the ulcerations in the urethra return, and with it the pain returns. I am using Vicodin to try to lessen some of the pain.
I know this must happen with other males who have a foley cath., and want to hear from anyone who has run into the same problem, and how thay have tried or found a way to lessen the ulcerations. I clean and change the bandage with ointment daily or even a couple of times daily, As suggested by my doc, I have the tube come out from my underwear on the left side one day, and the right side the next day, to lessen the pressure on the sides of the urethra. But I am not having success. And I spoke with my PCP last week, and he said he cannot come up with any other ideas, with the ends result of having to get a supra-pubic catheter as the only thing left that can be done.
As I mentioned, I am trying to hold off getting that, as it would stop me going into a pool for the aquatic therapy, which I enjoy tremendously and look forward to it once weekly.
Can anyone here help me with this problem, and what they have done? Like I said, I know for sure this can't be just happening to me--other men must have run into this problem. It is extremely painful, and now the ulcerations are starting to bleed. And I know I cannot stay on an antibiotic, as it would eventually make my body or the drug be unable to fight off the UTIs becoming resistant to the antibiotics. I do not want the
supra-pubic catheter, but it is looking like I may have no choice.
Can anyone help me--I am at wits end, and told my doc, who I like very much and is always now trying to keep me as comfortable as possible as my body deteriorates, that I am ready to cut the damn thing, (my penis), off--LOL...
I will take all suggestions possible--I am willing to try ANYTHING! My doc has me taking Vitamin C and a high dose of Zinc to try to help my skin from breaking down, as well as to try to help the ulcerations--which doesn't seem to be helping.
Do I have no other choice but to get the supra-pubic catheter? Please help me, and I thank anyone who responds.
Ken
(KEDASO)
I hope all can be as well as can be expected.
I am pleading to speak to someone here, a male as a female will not have this problem,
who has a foley catheter.
I am having problems with the damn thing, that I know other people must have faced who have progressing body deterioration with a degenerative disease. In my case, that being advanced CIDP--the ugly sister disease to ALS. There are only 5% of people with CIDP where the normal protocol of treatment doesn't help put it into remission, and I am in that 5%. My body is slowly progressing downhill, and I am trying to hold off some imminent things to come in my future. I cannot ask this question over at the CIDP/GBS chat room, because there are so few of us with CIDP that are degressing towards the end, and I cannot replies since no one can answer some problems I run into as I go downhill.
That being said, I need to speak to someone with a foley catheter. I have one, and I am having a major problem with the damn thing. I am trying to hold off getting a
supra-pubic catheter, since I am getting weekly aquatic therapy to try to keep my legs from contracting. I am sure others with a foley have run into this, and need imput as to how they were able to help the problem, or is the clear answer being that I now have no choice but to get a supra-pubic catheter.
The problem I am having is ulcerations of the urethra due to having the foley catheter itself. I have no feeling in the groin area at all, HOWEVER, I do seem to have feeling "inside" my body, as this is very painful. I am required to have the catheter in the first place, due to as mentioned, no feeling in that area; a neurogenic bladder with incontinence. I have had it now for over two years. Having it for that time, I have a small amount of urine that comes out around the catheter, through the urethra, out of the penis. With the tube inside the urethra, the constant pressure inside is causing ulcerations. I use ointments, ("triple-antibiotic ointment", or an actual prescribed anitbiotic ointment), to push down inside the urethra at the tip of the penis, then tape a 4 x 4 surrounding the penis end, to keep the ointment inside. Occasionally, I will get a UTI, as is usual and expected, for anyone with a foley cath. But when I do get the UTI, it just makes matters worse, as the small amount of urine that comes out from around the tube is infected with whatever bacteria is causing the UTI, which then infects the ulcerations, and makes it even MORE PAINFUL. By going on an antibiotic, eventually cures the UTI, but also heals the ulcerations. But as soon as I am off the antibiotic, a few weeks later, the ulcerations in the urethra return, and with it the pain returns. I am using Vicodin to try to lessen some of the pain.
I know this must happen with other males who have a foley cath., and want to hear from anyone who has run into the same problem, and how thay have tried or found a way to lessen the ulcerations. I clean and change the bandage with ointment daily or even a couple of times daily, As suggested by my doc, I have the tube come out from my underwear on the left side one day, and the right side the next day, to lessen the pressure on the sides of the urethra. But I am not having success. And I spoke with my PCP last week, and he said he cannot come up with any other ideas, with the ends result of having to get a supra-pubic catheter as the only thing left that can be done.
As I mentioned, I am trying to hold off getting that, as it would stop me going into a pool for the aquatic therapy, which I enjoy tremendously and look forward to it once weekly.
Can anyone here help me with this problem, and what they have done? Like I said, I know for sure this can't be just happening to me--other men must have run into this problem. It is extremely painful, and now the ulcerations are starting to bleed. And I know I cannot stay on an antibiotic, as it would eventually make my body or the drug be unable to fight off the UTIs becoming resistant to the antibiotics. I do not want the
supra-pubic catheter, but it is looking like I may have no choice.
Can anyone help me--I am at wits end, and told my doc, who I like very much and is always now trying to keep me as comfortable as possible as my body deteriorates, that I am ready to cut the damn thing, (my penis), off--LOL...
I will take all suggestions possible--I am willing to try ANYTHING! My doc has me taking Vitamin C and a high dose of Zinc to try to help my skin from breaking down, as well as to try to help the ulcerations--which doesn't seem to be helping.
Do I have no other choice but to get the supra-pubic catheter? Please help me, and I thank anyone who responds.
Ken
(KEDASO)
