long term indwelling catheter and free drainage to become permanent incontinent

[Inconito]

I'm trying again to go the catheter route to become incontinent.

So far I'm on my forth day, and so far no problems. The catheter I've inserted is a fr18 silastic foley catheter draining into a closed urinebag.

No signs of UTI, maybe because I'm taking a daily dose of d mannose, and cranberry pills, plus making sure to drink more, than normal to flush the catheter.

The testimonials say, that bladder shrinkage becomes irreversible after approx 6 months, others mention decades before it becomes permanent, some say the bladder will return to normal again, when the catheter is finally out, and despite now having a smaller bladder, that it will slowly resume old practice, and expand to accommodate more storage.

So what are people's experiences using catheters to become incontinent?

Is incontinence permanent, or only for a brief period, when the bladder has shrunk and maybe the sphincters from being held open from the catheter for a long time?

[kincaid]

10 hours ago, Inconito said:

I'm trying again to go the catheter route to become incontinent.

So far I'm on my forth day, and so far no problems. The catheter I've inserted is a fr18 silastic foley catheter draining into a closed urinebag.

No signs of UTI, maybe because I'm taking a daily dose of d mannose, and cranberry pills, plus making sure to drink more, than normal to flush the catheter.

The testimonials say, that bladder shrinkage becomes irreversible after approx 6 months, others mention decades before it becomes permanent, some say the bladder will return to normal again, when the catheter is finally out, and despite now having a smaller bladder, that it will slowly resume old practice, and expand to accommodate more storage.

So what are people's experiences using catheters to become incontinent?

Is incontinence permanent, or only for a brief period, when the bladder has shrunk and maybe the sphincters from being held open from the catheter for a long time?

When I tried them 15 years ago it was for 2.5 months, unfortunatly due to mistakes on my end I had many problems, pain and blood.

I have now aquired proper knowledge and better material, also the silastic like you but CH14 and will get training from the hospital a few weeks after surgery.
What I did experence from all my past surgeries that had a catheter in place (CH 14, 27 and 30) is that often there was little or no control the first 2 - 3 days after removing it. Once I had complete numbness (atonic bladder) and could not even empty it at all, nothing would open up. This cleared u after 4 days or so.

So in a few weeks from now I too will go ahead for a 10 month journey in proper catheterisation. I too have cranberry supplmenets ready as I need to take them anyway.

It is important to drink 3L of water / day and make sure you're not constipated to minimise the risk for bladder stones. Also when drinking so much, add elektrolytes in one of the water bottles to prevent your body from feeling weak.

[Elfy]

Cranberry juice/pills will do nothing to treat or prevent UTIs. That's an old wives tale.

[Inconito]

1 hour ago, Elfy said:

Cranberry juice/pills will do nothing to treat or prevent UTIs. That's an old wives tale.

Actually there are mixed opinions in scientific articles. At least they are doing no harm.

1 hour ago, kincaid said:

When I tried them 15 years ago it was for 2.5 months, unfortunatly due to mistakes on my end I had many problems, pain and blood.

I have now aquired proper knowledge and better material, also the silastic like you but CH14 and will get training from the hospital a few weeks after surgery.
What I did experence from all my past surgeries that had a catheter in place (CH 14, 27 and 30) is that often there was little or no control the first 2 - 3 days after removing it. Once I had complete numbness (atonic bladder) and could not even empty it at all, nothing would open up. This cleared u after 4 days or so.

So in a few weeks from now I too will go ahead for a 10 month journey in proper catheterisation. I too have cranberry supplmenets ready as I need to take them anyway.

It is important to drink 3L of water / day and make sure you're not constipated to minimise the risk for bladder stones. Also when drinking so much, add elektrolytes in one of the water bottles to prevent your body from feeling weak.

Let's keep in touch? I also plan on being cathed for a very long time.

What I like most, is I don't feel my bladder at all. I empty the bag every hour to two hours.

Currently waiting for a bag holder for the calf, got one for the leg But Not kept slipping down. So right now I'm wearing the bag in by diaper. I still need to wear some sort of padding, to catch the small leaks around the catheter. Even with a 18fr I still have minor leakage around the catheter....

My experience in regard to sizing, now it bigger is better, as it's easier for any debris in the bladder to exit, rather than clogging, which I experienced the last time.

[kincaid]

54 minutes ago, Inconito said:

Actually there are mixed opinions in scientific articles. At least they are doing no harm.

Let's keep in touch? I also plan on being cathed for a very long time.

What I like most, is I don't feel my bladder at all. I empty the bag every hour to two hours.

Currently waiting for a bag holder for the calf, got one for the leg But Not kept slipping down. So right now I'm wearing the bag in by diaper. I still need to wear some sort of padding, to catch the small leaks around the catheter. Even with a 18fr I still have minor leakage around the catheter....

My experience in regard to sizing, now it bigger is better, as it's easier for any debris in the bladder to exit, rather than clogging, which I experienced the last time.

Well, i don't want to go too big, 18 hurted with me back then and since i got 3 strictures i prefer thinner ones. I'll have to wear small pads to catch leaks as i can't wear padding then.

Sure, am definitely interested in keeping in contact

As for cranberry, it definitely helps, i had many UTI from stricture 1 and it reduced the amount of e-coli bacteria.

That alone is not enough of course but it definitely helps

[Diapered Dave]

8 hours ago, Elfy said:

Cranberry juice/pills will do nothing to treat or prevent UTIs. That's an old wives tale.

I beg to differ....  My doctor actually recommended Cranberry Juice for UTI's.  It's not that cranberry juice has any antibiotic properties, rather it changes the PH level of urine, making it hard for bacteria to multiply. I've been playing with catheters for years, and early on, I got several UTI's. It always started the same way... Cloudy urine and / or burning when peeing, then pain in the kidneys if I let it go for a few days. Then it was off to the Doc, for a urine test, and antibiotic prescription. Now, if I start getting cloudy urine or burning when peeing, I do a "Cranberry flush"... I buy a half gallon of cranberry juice,  and pretty much drink ONLY cranberry juice until it's gone. Usually over an 8 - 10 hour period. It has worked EVERYTIME, I'm back to normal the next day.

Now perhaps this won't work for you, and this isn't medical advice... But it has worked very well for me.

[kincaid]

27 minutes ago, Diapered Dave said:

I beg to differ....  My doctor actually recommended Cranberry Juice for UTI's.  It's not that cranberry juice has any antibiotic properties, rather it changes the PH level of urine, making it hard for bacteria to multiply. I've been playing with catheters for years, and early on, I got several UTI's. It always started the same way... Cloudy urine and / or burning when peeing, then pain in the kidneys if I let it go for a few days. Then it was off to the Doc, for a urine test, and antibiotic prescription. Now, if I start getting cloudy urine or burning when peeing, I do a "Cranberry flush"... I buy a half gallon of cranberry juice,  and pretty much drink ONLY cranberry juice until it's gone. Usually over an 8 - 10 hour period. It has worked EVERYTIME, I'm back to normal the next day.

Now perhaps this won't work for you, and this isn't medical advice... But it has worked very well for me.

Yup, works for me too, but i use 2 cranberry tablets a day then with 3 liter water as juice contains too much sugars and I'm diabetic. I did take some anti inflammatory too to be extra certain.

Mine recommended the tablets because they're more concentrated than juice 

[kincaid]

So i had the Botox injection yesterday, no bladder neck incisions as it looked fine 

They wanted to remove the catheter but i insisted to keep it. As i felt only light irritation and was free of urges.

They allowed it, reluctantly, and'need to go back in a week to have it removed. I can do so myself but they want to be sure it's out to have a clear urodynamics test.

[Inconito]

Hope everything will be fine. And you'll soon be ready to accompany me.

[Inconito]

small update.

I decided this time to start a log on my catheter use.

Put in a catheter Sept. 9th. a size FR18, big I know, but I have debris in my bladder which previously has meant frequent blockages and having to stop using catheters. As a matter of fact, the guides for catheter use, also says, that if debris is found in the bladder, a size 18FR should be the choice of size.

Anyway I had to changed catheter Sept. 15th. because in the beginning I wanted to play safe. However I made an error, I should have clamped the old catheter before removing it, so I would have had some urine in my bladder. Because when I put in the new one, I think I hit the bladder wall, and I had very frequent bladder spasms for the rest of the day, in fact to frequent and heavy, that I had to take the cath out, sometime during the night.

Monday 16th. I spent the day without a catheter, and in the evening I inserted a new cath, this time a FR16, this one remained inserted until Tuesday night or Wednedsday morning, can't remember exactly. But was taken out, because I thought it was blocked, urine was not flowing as it should, but came in large gushes, like 150-200ml. by looking at the bag.

Another day or two when by without wearing a catheter, and on Thursday evening th 19th. I again inserted a new catheter, this time a FR18. This has remained in SITU since. 

In regard to other complications like UTI and such, I have not experienced any, I take a dose of D-mannose and Cranberry pills 3x day.

At night time, I open the drainage port in my urine bag, and let it flow out.

Wash a couple of times a day, down there.

during daytime I use a leg holder for my urine bag, when at home, I just carry the bag in my diaper. 

Clothing, usually I wear dress pants, which are not tight, and whith these pants, I can actually carry my urine bag in a thin diaper, however when wearing jeans I must use the leg holder, because jeans seems to constrict the flow from my bladder.

 

Final comments about using catheters.

I have to say. Using catheters is not a walk in the park. One must always be aware of the situation about drainage, for instance I always have a small scissor with me, should an emergency situation come, where I have to remove the catheter due to a blockage and such. Health is more important.

Cleanliness, I have become fanatic about washing hands, not touching doorhandles to public / office toilets. 

Clothing, well no changes here.

Wellbeing, I do feel the cahteter frequently, I tend to belive I feel the tip of the catheter pooking my bladder wall sometimes, and also when standing up / emptying the urinebag, I sort of feel a surge in my bladder, as trapped urine all the sudden flows out. I must admit, it's a strange feeling, it's like a vakuum in my bladder.

Bladder spasms, are not overly strong in general, nor frequent, in general, except on the beforementioned Sunday. But I do have mild bladder spasms, sometimes.

I do hope, that the experience I have had so far, will help me on my further journey, so that I can keep my bladder drained all the time, without having to take days off, as these days off, are counterprodutive in my objective of reducing bladder capacity, indefinately. Maybe, the coping period is just longer than I expected, and later on my bladder has gotten accumstomed to be empty all the time. Only time can tell.

 

 

[kincaid]

I never clamped it when removing it, neither do they do this in the hospital. they just instruct you to drink a lot right before removing it, this way you can usually pee a little to clean te urethra when having removed the catheter.

For your blockages, I see an issue. Sometimes you wear the leg bag in your diaper, the level is too high, keep the leg bag attached to the lower leg, I know from experience this leads to better drainage too.

If you really have so much blockages, consider getting a 3-way catheter, use a catheter plug to plug the 3rd way and only unplug it to inject sterile saline water to flush the bladder once a day.

Bladder spasms should decrease over time as your body gets used to it, it did with me. 

For your night bag, it's only safe to leave the exist port open if you're hospitalised and gtting a constant bladder flush post-surgery, or when you connect the night bag to your leg bag as presribed per regulations. I connect my night bag to the leg bag and always keep the night bag valve closed.
I was the entire genital area with hibiscrub (chlorhexidine) once a day and disinfect the foreskin and exposed part of the catheter with chlorhexidine containig disinfectant. 

For irritations in the entrance of the urethra I use lidocaine ointment, after disinfecting everything, put some ointment on the opening ofthe foreskin, as well as on the first cm of the catheter.
Gently push the catheter in the bladder for 1 cm, then wait 1 minute and gently pull it back 1 cm (do it gently and comfortable!!) this way you sedate the irritated part of the urethra.
After a few minutes, it will feel comfortably numb.

You should figure out the source of the blockage. Is it scar tissue, bladder stones or kidney stones? Either way, a very good method is to drink 3L of water a day, and if its really blocked more, add movement, excercise , this will hurt a little but it will lossen the tissue thats caught in the lumen (officially recommended by doctors, exercise can help, but can also loossen stuck tissue in the bladder wall)

Use a velcro catheter fixation strip if you don't have one yet on your leg to help reduce strain on the catheter.
Avoid bending over too long, this causes kinks and hurts.

Another method I found to unblock things is go to the toilet for passing stool. Thepressure you make will be enough to push the tissue through the catheter, but be aware it will leak past the catheter too then.
 

When wearing a diaper over the catheter, just to catch leaks even when a bag is attached, disinfect the foreksin and catheter twice a day.

I'm still wearing my silicone one from the hospital with little discomfort

As a closure: avoid removing and reinsterting a catheter to frequently, this will cause increased trauma in your urethra, if you have problems, wait a few days, analyse problem and try to find a solution, then try again, but try to leave it in longer unless there are definitly problems.

It is important to allow the urethra to recover completely before trying again. Only reinserting a new catheter right away is fine if there was little irritation before.

To prevent inserting the new catheter too far, measure the length of the catheter that exits the urethra and write it down. When inserting the new one, keep pushing it in untill at least the measured length is still exposed but go just a little deeper, then inflate the balloon and pull gently back.

[Inconito]

Tanks for the advices.

I do keep things clean, washing several times a day. I hardly ever have leakage outside the catheter. The diaper remains dry, more or less. Having the diaper on is literally a safety thing. Today I was walking the dog, had a pair of underwear on top of my diaper, and the bag lying in my underwear, guess what, the outlet valve opened, and my pants got soaked.....As well as one shoe.

 

[kincaid]

1 hour ago, Inconito said:

Tanks for the advices.

I do keep things clean, washing several times a day. I hardly ever have leakage outside the catheter. The diaper remains dry, more or less. Having the diaper on is literally a safety thing. Today I was walking the dog, had a pair of underwear on top of my diaper, and the bag lying in my underwear, guess what, the outlet valve opened, and my pants got soaked.....As well as one shoe.

 

Ouch :s that never happened to me before, but then again I don't put the bag in my underwear

It's just that it really drains better when it is below the bladder, the lower the better the drainage and the lower the irritation, spasms etc that you get from it.

This is also why I am not allowed to rest with my legs on the couch because the leg bag is almost at the same level of the bladder, it is fine for very short period (10 minutes) but after that I have to lower it or I feel it in my bladder.
It is also important to choose reliable leg bags, the ones the hospital gave me are ok but won't last ong when you're very active (brand: conveen coloplast) , the ones I ordered are from German Health Care and even have a safety holder to fold the outltet valve in upwards.

[Inconito]

6 hours ago, kincaid said:

Ouch :s that never happened to me before, but then again I don't put the bag in my underwear

It's just that it really drains better when it is below the bladder, the lower the better the drainage and the lower the irritation, spasms etc that you get from it.

This is also why I am not allowed to rest with my legs on the couch because the leg bag is almost at the same level of the bladder, it is fine for very short period (10 minutes) but after that I have to lower it or I feel it in my bladder.
It is also important to choose reliable leg bags, the ones the hospital gave me are ok but won't last ong when you're very active (brand: conveen coloplast) , the ones I ordered are from German Health Care and even have a safety holder to fold the outltet valve in upwards.

One thing I do struggle with, and which is hardly ever mentioned when the conversation is about wearing a catheter. Nocturnal erections.

For me, they do wake me up, it's rather painful, because I'm "a grower" not a shower.... so the penis grows along the tube, which obviously is dry. So just now, I did see Minot bleeding from the tip of the penis.

 

[kincaid]

20 hours ago, Inconito said:

One thing I do struggle with, and which is hardly ever mentioned when the conversation is about wearing a catheter. Nocturnal erections.

For me, they do wake me up, it's rather painful, because I'm "a grower" not a shower.... so the penis grows along the tube, which obviously is dry. So just now, I did see Minot bleeding from the tip of the penis.

 

I know, I asked the nurses, they said they give patients Valium if that happened. I went to my GP to ask this and he confirmed this is true, he prescribed me 5mg valium, one tablet before bedtime. It really helps, but when you wake up (6+ hours later, you will get one again but not as powerfull, but I no longer wake u at 2 AM with a hard one.

 

I had that the day of surgery when they did an intensive TURP.....I was in intense pain :s

[kincaid]

So the Botox was not successful, there were still minor spasms 

I insisted on being catheterised, they switched from the ch12 normal tip to ch16 tiemann tip, silicone though.

They said i could keep it in 6 weeks  but i want to use my silastic but i need to get thicker ones as i have ch14 and need 16 now.

I do feel a bit sore for the moment.

[Inconito]

Where do you get the silastic catheters in Europe?

[kincaid]

On 9/24/2019 at 9:28 PM, Inconito said:

Where do you get the silastic catheters in Europe?

 

[kincaid]

Unfortunatly I had to prematurely remove my first catheter, it was in almost 4 weeks but the nurse who inserted it damaged some part of the bladder neck which didn't heal properly and I still have red debris coming loose from it.

In addition I had an enormous amount of smaller debris, catheter blockage, sharp cutting pain in the bladder neck where hte balloon was rubbing the sore tissue that was damaged etc.

Luckily there was no infection so I am now diapered 24/7 for 2 weeks and then I will reinsert a new one with a normal tip (the silastic one) in the hopes the damage will be repaired.
I just couldn't go on with this constant pain anymore.

[TGalactic2012]

On 9/11/2019 at 10:31 PM, Inconito said:

I'm trying again to go the catheter route to become incontinent.

So far I'm on my forth day, and so far no problems. The catheter I've inserted is a fr18 silastic foley catheter draining into a closed urinebag.

No signs of UTI, maybe because I'm taking a daily dose of d mannose, and cranberry pills, plus making sure to drink more, than normal to flush the catheter.

The testimonials say, that bladder shrinkage becomes irreversible after approx 6 months, others mention decades before it becomes permanent, some say the bladder will return to normal again, when the catheter is finally out, and despite now having a smaller bladder, that it will slowly resume old practice, and expand to accommodate more storage.

So what are people's experiences using catheters to become incontinent?

Is incontinence permanent, or only for a brief period, when the bladder has shrunk and maybe the sphincters from being held open from the catheter for a long time?

When i go to my urologist appointment on 11/12/2019, will i be catheterized what FrEnch size will he do?

[SunOfSheep]

When I was a lot younger around 10, I. Had a Foley catheter for about 6 months. I remember when it was finally removed I wet my self maybe an hour after. I was in diapers due to this for probably a few months and basically had to be repotty trained. At the time being 10 it was an awful experience, I was in a hospital the entire time and when it was finally removed i was so happy to finally not have it.

The moral is, this will definitely lead to incontinence, it’s not quick and 6 months is probably the shortest possible time it could happen in, i was very ill and that likely contributed to it also.