KEDASO
Active member
- Joined
- Mar 22, 2009
- Messages
- 42
- Reason
- Loved one DX
- Diagnosis
- 04/2001
- Country
- US
- State
- California
- City
- Oceanside
Good morning, everyone,
I have a neurogenic bladder, thus have a urinary catheter. I have had it for about 1 1/2 years now. And now have two problems:
I have had the hardest time with the damn thing.
If I was bedridden, I wouldn't be having that many problems. But I am not--I am still able to walk small distances, and have my electric wheelchair for long distances or on bad days. The extent of my walking, is from my bedroom, to my garage, (which is converted into where my office is).
When I first got the catheter, I was having painful bladder spasms, (from what I was told by my Urologist, if the bladder is empty and a spasm happens, that's what makes it painful). So, was told to drink more liquids, (of which I never was a good drinker of fluids, and now even less so with chance of choking or coughing on it), and was first put on a drug to help stop the bladder spasms, Enablex. After a couple of months, after it wasn't doing a great job, I was put on Detrol LA. After a few weeks, it seemed to mellow out the bladder spasms. Still was getting occasional UTI's, but was told that people with catheters usually do get UTI's. BUT, I was always under the impression, that once you are on a catheter, you wouldn't have to think of incontinence anymore.
Silly me--the leakage is a problem, especially when a spasm happens, and it could be a gusher. I tried having the size of the catheter increased--no help. And I tried putting a bandage at the tip of the penis, but that cause a bad infection at the tip, which end result was a larger opening now at the end of the penis.
DOES ANYONE HAVE ANY SUGGESTIONS IN HELPING STOP THE LEAKAGE? I find it very messy, and on occasion, very embarrassing when it happens in public, and you end up with wet pants. I have also now sleep with underwear and pajama bottoms, since I had wet the bed a few times, and now the underwear and pajamas can absorb the leakage. Though, I find the leakage less when lying in bed, which is why I mentioned that if I was bed-ridden, I don't think the problem would be as bad. While up, and in my own house, I just keep the regular catheter bag on, and when I go out in public, I use the leg bag under my pants. By the way, they changed the type of catheter to a teflon tube, which is supposed to cut down on UTI's, so that the bacteria doesn't stick to the tube.
---
Now we get to problem number TWO...
Because I am getting weaker, I have been sleeping twice per day. I get up in the morning, and can only make it to about 1pm, then must go to bed for sleep, wake up around 7pm, then go back to sleep around 10-11pm, then back up at 5am.
So, my neuro sent me to a neuro specialist who deals with sleep problems, with my own neuro having thoughts of trying meds to keep me awake during the day. So, first they did a test to make sure I didn't have Obstructive Sleep Apnea, which I don't. I have very shallow breathing now around the clock, and not just at night, so it is because I am getting weaker. So, she wanted to experiment with meds to try to keep me awake during the day. I first tried Provigil for two weeks, which didn't help, even with increased dosages. So--on to amphetamines... I am now on Methylphenidate. And I am supposed experiment with different dosages. I first started with 5mg--no help. I am now on 10mg, twice in the early, then later morning, which is having a little help. Next I will be trying 15mg, which I think will do the trick...ah--but a bad side effect has happened. The nasty bladder spasms have returned with a vengeance, so that now the VERY painful bladder spasms are happening about 3 or 4 every hour, though when in bed and my body is more relaxed, it only occasionally happens.
So, I have a very good pharmacist, and spoke to him about it. He is aware of my disease, and understands what the doctors are trying to do. He definitely said the Meth. could bring back the bladder spasms. When I asked him if I could increase the dose of the Detrol LA, he said no, that Detrol LA was made at one dose only, and only allowed to take it once daily. He suggested to try a plain amphetamine, (which I don't know one from the other), with one that came to his mind of Adderall or Adderall XR, or a new one out called Vyvanase. I also asked him if it was possible then, to have TWO anti-bladder spasm drugs, since I was on Enablex before, that what if I took both the Detrol LA AND the Enablex. He said he only had one customer on two, and didn't know the results with him. So, I first tried reaching my Urologist, and Friday was his day off, (this has all just happened within the past two weeks). So, I called the neuro sleep specialist, and detailed her with what the pharmacist said. She understands the problem, and said she would speak directly to the pharmacist on this, which she did, as the pharmacist told me that both of them would be investigating the use of a possible other amphetamine that might not have, or be lesser on the spasms. Meanwhile, on Monday, I will try my Urologist again--I like the guy, but he has a tough nurse that will many times answer the question herself, and not let you speak to the doctor. If that is the case, I have an appointment with my primary care doctor on Wednesday, who I have been keeping in the loop of what has been going on. He himself, told me to try taking the drugs at different times of the day, but that didn't help. I will suggest to him, to see if I can take both the Detrol LA AND the Enablex or other similar drug, to see if he can speak directly to my Urologist on this.
I wouldn't be bringing all this up, but the bladder spasms are VERY, VERY painful when they happen. I immediately stop what I am doing, clench my fists, grit my teeth, and try to bear down while the spasm happens, which lasts about two minutes. And I get them 3-4 per hour while I am up.
HAS ANYONE ELSE HERE BEEN FACED WITH THIS PROBLEM?
HAS ANYONE ELSE HERE HAD THEIR DOCTORS ATTEMPT AMPHETAMINES TO DEAL WITH THE GREAT FATIGUE?
HAS ANYONE ELSE HERE BEEN FACED WITH THE BLADDER SPASMS, AND WHAT THEY DID FOR IT?
IT IS TWO DIFFERENT PROBLEMS, WHERE A SIDE-EFFECT OF THE PILL FOR ONE PROBLEM EFFECTING THE OTHER PROBLEM--ANYONE ELSE BEEN FACED WITH THAT?
Please--if anyone has been in this situation-please let me know what was done, THANKS.
KEDASO
(Ken)
I have a neurogenic bladder, thus have a urinary catheter. I have had it for about 1 1/2 years now. And now have two problems:
I have had the hardest time with the damn thing.
If I was bedridden, I wouldn't be having that many problems. But I am not--I am still able to walk small distances, and have my electric wheelchair for long distances or on bad days. The extent of my walking, is from my bedroom, to my garage, (which is converted into where my office is).
When I first got the catheter, I was having painful bladder spasms, (from what I was told by my Urologist, if the bladder is empty and a spasm happens, that's what makes it painful). So, was told to drink more liquids, (of which I never was a good drinker of fluids, and now even less so with chance of choking or coughing on it), and was first put on a drug to help stop the bladder spasms, Enablex. After a couple of months, after it wasn't doing a great job, I was put on Detrol LA. After a few weeks, it seemed to mellow out the bladder spasms. Still was getting occasional UTI's, but was told that people with catheters usually do get UTI's. BUT, I was always under the impression, that once you are on a catheter, you wouldn't have to think of incontinence anymore.
Silly me--the leakage is a problem, especially when a spasm happens, and it could be a gusher. I tried having the size of the catheter increased--no help. And I tried putting a bandage at the tip of the penis, but that cause a bad infection at the tip, which end result was a larger opening now at the end of the penis.
DOES ANYONE HAVE ANY SUGGESTIONS IN HELPING STOP THE LEAKAGE? I find it very messy, and on occasion, very embarrassing when it happens in public, and you end up with wet pants. I have also now sleep with underwear and pajama bottoms, since I had wet the bed a few times, and now the underwear and pajamas can absorb the leakage. Though, I find the leakage less when lying in bed, which is why I mentioned that if I was bed-ridden, I don't think the problem would be as bad. While up, and in my own house, I just keep the regular catheter bag on, and when I go out in public, I use the leg bag under my pants. By the way, they changed the type of catheter to a teflon tube, which is supposed to cut down on UTI's, so that the bacteria doesn't stick to the tube.
---
Now we get to problem number TWO...
Because I am getting weaker, I have been sleeping twice per day. I get up in the morning, and can only make it to about 1pm, then must go to bed for sleep, wake up around 7pm, then go back to sleep around 10-11pm, then back up at 5am.
So, my neuro sent me to a neuro specialist who deals with sleep problems, with my own neuro having thoughts of trying meds to keep me awake during the day. So, first they did a test to make sure I didn't have Obstructive Sleep Apnea, which I don't. I have very shallow breathing now around the clock, and not just at night, so it is because I am getting weaker. So, she wanted to experiment with meds to try to keep me awake during the day. I first tried Provigil for two weeks, which didn't help, even with increased dosages. So--on to amphetamines... I am now on Methylphenidate. And I am supposed experiment with different dosages. I first started with 5mg--no help. I am now on 10mg, twice in the early, then later morning, which is having a little help. Next I will be trying 15mg, which I think will do the trick...ah--but a bad side effect has happened. The nasty bladder spasms have returned with a vengeance, so that now the VERY painful bladder spasms are happening about 3 or 4 every hour, though when in bed and my body is more relaxed, it only occasionally happens.
So, I have a very good pharmacist, and spoke to him about it. He is aware of my disease, and understands what the doctors are trying to do. He definitely said the Meth. could bring back the bladder spasms. When I asked him if I could increase the dose of the Detrol LA, he said no, that Detrol LA was made at one dose only, and only allowed to take it once daily. He suggested to try a plain amphetamine, (which I don't know one from the other), with one that came to his mind of Adderall or Adderall XR, or a new one out called Vyvanase. I also asked him if it was possible then, to have TWO anti-bladder spasm drugs, since I was on Enablex before, that what if I took both the Detrol LA AND the Enablex. He said he only had one customer on two, and didn't know the results with him. So, I first tried reaching my Urologist, and Friday was his day off, (this has all just happened within the past two weeks). So, I called the neuro sleep specialist, and detailed her with what the pharmacist said. She understands the problem, and said she would speak directly to the pharmacist on this, which she did, as the pharmacist told me that both of them would be investigating the use of a possible other amphetamine that might not have, or be lesser on the spasms. Meanwhile, on Monday, I will try my Urologist again--I like the guy, but he has a tough nurse that will many times answer the question herself, and not let you speak to the doctor. If that is the case, I have an appointment with my primary care doctor on Wednesday, who I have been keeping in the loop of what has been going on. He himself, told me to try taking the drugs at different times of the day, but that didn't help. I will suggest to him, to see if I can take both the Detrol LA AND the Enablex or other similar drug, to see if he can speak directly to my Urologist on this.
I wouldn't be bringing all this up, but the bladder spasms are VERY, VERY painful when they happen. I immediately stop what I am doing, clench my fists, grit my teeth, and try to bear down while the spasm happens, which lasts about two minutes. And I get them 3-4 per hour while I am up.
HAS ANYONE ELSE HERE BEEN FACED WITH THIS PROBLEM?
HAS ANYONE ELSE HERE HAD THEIR DOCTORS ATTEMPT AMPHETAMINES TO DEAL WITH THE GREAT FATIGUE?
HAS ANYONE ELSE HERE BEEN FACED WITH THE BLADDER SPASMS, AND WHAT THEY DID FOR IT?
IT IS TWO DIFFERENT PROBLEMS, WHERE A SIDE-EFFECT OF THE PILL FOR ONE PROBLEM EFFECTING THE OTHER PROBLEM--ANYONE ELSE BEEN FACED WITH THAT?
Please--if anyone has been in this situation-please let me know what was done, THANKS.
KEDASO
(Ken)