Voiding and Avoiding a catheter?

[babykeiff]

Slightly off topic...
Why do people post questions here seeking support, and then when answered / supported, they reply with I'm not asking for advise/help/support...

Am I incorrect to presume that ADISC is a support forum?
Are some people here too afraid to admit that they want/need support - so instead of accepting it, they diss those few people that freely give it?
In my humble opinion, if that behaviour continues, those who support others will feel unappreciated, and will leave - which means the site will only contain the people looking for support without those able to support them!

 

[babykeiff]

I would be careful about this and again discuss with a medical professional. The advice I was given by a urology NP was to continue to try to fill and empty your bladder to maintain the muscle tone in your detrusor.

Using a muscle does excercise it, so there is logic and some truth in this.

Simply empyting your bladder constantly (whether in a diaper or whatever), from what I was told, will actually serve to increase retention. I'm not an expert here... just passing along information that was shared with me.

There is little truth in what you are saying - voiding in a toilet vs a diaper does not alter retention, but when one voids in a diaper, one does not pay attention to urine discoluration. As a result, bladder infections are more difficult to detect earlier by a paitent.

Retention is normally caused by a weakness in the bladder wall which prevents the bladder from constricting fully. Being in diapers and voiding with the slightest urge reduces the bladder's need to expand fully and therefore, can allow the muscle to repair itself due to the bladder never being stretched to capacity. However, this can result in a secondary problem which is usually contary to medical thinking - the dependancy on diapers due to the regained habit of voiding as soon as urine enters the bladder.

There is a rare condition that causes bladder retention and that is overtightning of the urinary sphincter. This is where the urinary sphincter only partially opens during voiding, and the bladder muscles are not strong enough at low volumnes to completely constrict due to reverse urine pressure from the partially opened sphincter.

Both causes are helped by diaper wearing, but as earlier mentioned, to medical staff, a paitent reverting to diapers feels to medical, as a failure to 'fix' the paitent.

The information you are sharing, seems to have come not from your medical specialist, but more from an administrator involved in your treatment. I suggest that you ask your team :-

"What long term solution do you see in relation to my X issue"

 

[babykeiff]

Constant voiding will not solve the retention problem. It just wont.

Relaxation of the bladder does partially address the retention issue. Constant voiding / weeping into a diaper does help.

There are several techniques to relax the pelvic floor to reduce the retention and you could try a TENS training as well. Did not help me though.

You are correct, but these procedures should ONLY be done with the direct instruction and training from your medical team.

In the end to get rid of retention is ISC the best solution, much better than an abdominal catheter or or a bladder pacemaker.

ISC is only a stop-gap.

Facts, in progression order...

• Inserting something into the body either via a needle / in a hole that was designed as an exit port introduces not only the foreign object, but also bacteria and virus even in the cleanest of environments.
  • The urethra stays bacteria and virus free due to urine exiting same. A tube entering same pushes virus'/bacteria that exist in the urethra into bladder etc.
• Repeating same process increases the risk of infection
• The more often this is done, the more infection the body has to handle
• There is a limited number of medication to cure infection
• Once the limited number of cures are used, there is no cure to the infections
• Infections, in this case, attack bladder, kidneys, blood stream etc.
• Kidney failure = need new ones + daily dialysis.
• Blood sepsis = high chance of death (recovery rate 35%)

This all means that enough repetitive insertation of catheter into the urinary tract leads to death.

As a result, in my humble opinion, ISC is not the best solution to urinary retention. Surgical intervention of a urinary sphincter bypass is usually the better option, but that is between you and your medical team, not an anomyised internet support group.

 

[Pongoandperdi15]

I'm so confused I simply offered my advice based on what my urologist has told me. I use stomach muscles to urinate all things that point to a damaged bladder, tests have concluded it gives a tiny amount of response hence the overflow but other than that it's dead, I need ISC to void fully there is no other way. Not once did I say Retention was self induced, I implied that my reluctance to perform ISC when I was first diagnosed with retention has made my situation of kidney stones and infections self induced because I thought I was being sensible by just letting my bladder overflow and not putting a catheter in it, Retention can be caused by a whole host of things diabetes, multiple sclerosis, myasthenia gravis, nerve damage, trauma and yes a truck driver may be able to get a 1 ltr bladder but the key is they can get it out I can't, I physically can't if I try I blow my brains out trying to push. I'm on a wait list for alternative solutions and do you know which one he said was his last resort urinary diversion surgery as that causes the most amount of damage and leaves a lasting impact that's irreversible, my urologist has said there's nothing wrong with me sticking at ISC if I'm comfortable with that it's seen as the gold standard in urological management and isn't considered dangerous. Ive attached two links one is a PDF download from a UK hospital and the other is official coloplast literature

https://www.gloshospitals.nhs.uk/documents/15978/Intermittent_Self-Catheterisation_ISC_for_adults_GHPI0855_07_22.pdf&ved=2ahUKEwj729qJ4p-CAxUCUkEAHRxHDFUQFnoECA4QBg&usg=AOvVaw0sSjdfwjDhRz3fRyijMq07

Adherence to ISC is still a challenge

When it comes to treating bladder issues, intermittent self-catheterisation (ISC) has long been recognised as best practice treatment. But barriers to adherence still exist. Why is that the case?

www.coloplastprofessional.co.uk

I've a whole host of neurological symptoms ranging from migraines, ptosis and neuropathy just to name a few this isn't my only one.

The point of a forum is to share experiences I was simply sharing mine as was every other member in the hope that it could help the OP decide what they need to do. Sometimes making a big decision to do something to your body is a hard one I got offered these options urinary diversion surgery, suprapubic catheter or sacral nerve treatment, carry on catheterising.... I've a week to decide which one to choose and yes I'm going to discuss these options with my urologist who now has further test data Infront of him he can advise me based on a medical perspective but who better understands the workings/downfalls/advantages of a Catheter/nappy/indwelling catheter/urostomy/colostomy than the people who use them 24/7, maybe someone who has a urostomy regrets that decision, or someone uses nappies and finds that they get horrific rashes all the time so the only option was a urostomy and it changed their life for the better, only one way to find out and that's to ask the question. I think what most people mean when they say I don't need an answer is they don't need a medical diagnosis that's what medical professionals are for.

On a side note every time I've ever posted about having another UTI of which I've had lots this year something I can't remember if I've ever mentioned is that I've a high amount of sugar a lot of the time in my urine I dont know why I dont eat a lot of sugar but my body seems to glucose dump into my urine (it's a question for my urologist) high glucose in your urine is known for causing complications such as UTIs as urine is not despite popular belief sterile and the sugar gives the bacteria food which is what is normally absent from the bladder.

 

[Pino]

Relaxation of the bladder does partially address the retention issue. Constant voiding / weeping into a diaper does help.

You are correct, but these procedures should ONLY be done with the direct instruction and training from your medical team.

ISC is only a stop-gap.

Facts, in progression order...

• Inserting something into the body either via a needle / in a hole that was designed as an exit port introduces not only the foreign object, but also bacteria and virus even in the cleanest of environments.
  • The urethra stays bacteria and virus free due to urine exiting same. A tube entering same pushes virus'/bacteria that exist in the urethra into bladder etc.
• Repeating same process increases the risk of infection
• The more often this is done, the more infection the body has to handle
• There is a limited number of medication to cure infection
• Once the limited number of cures are used, there is no cure to the infections
• Infections, in this case, attack bladder, kidneys, blood stream etc.
• Kidney failure = need new ones + daily dialysis.
• Blood sepsis = high chance of death (recovery rate 35%)

This all means that enough repetitive insertation of catheter into the urinary tract leads to death.

As a result, in my humble opinion, ISC is not the best solution to urinary retention. Surgical intervention of a urinary sphincter bypass is usually the better option, but that is between you and your medical team, not an anomyised internet support group.

I see. I will unwatch this thread now. Live long an prosper.

 

[EcoIncon]

I'm so confused

I can totally understand why you are confused. Post responses here include a lot conflicting experience and opinion as well as opinions stated as facts. Here is a summary of my experience as it relates to your question:

1. ISC caused me infections that eventually resulted in sepsis (which I thankfully survived unlike the 35% that find it fatal - it is not a 35% survival rate but a 20-36% mortality rate - which is still very bad). There are others on this board that have used ISC for years without issue (or with minimal issues)
2. I was able to get retention under control through a lot of work including, timed voiding (fill as completely as possible and empty as much as possible each time), pelvic floor exercise, drugs (alfuzosin), double voiding, pressing above my pubic bone, etc. I have documented history that voiding at first urge was lowering my bladder capacity and raising my PVR.

It sounds as though you are beyond my experience and I am very sorry to hear this as it means my advice doesn't help you. In any case, each of us is very complex and what works for one person may not work for another. They call it practicing medicine for a reason. Even doctors have a lot of bias. The first urologist I spoke to recommended surgery after I got sepsis. I got a second opinion and have managed without surgery and even flourished.

So my one piece of advise based on my experience... if the advice you are getting from your doctor does not 1) fit with all of the relevant facts and 2) instill confidence that is presents the best possible future for your needs and 3) make sense to you (well explained).... get another opinion.

I wish you luck finding a path forward.

 

[babykeiff]

I see. I will unwatch this thread now. Live long an prosper.

I'm so confused...

They call it practicing medicine for a reason. Even doctors have a lot of bias. .

..if the advice you are getting from your doctor does not 1) fit with all of the relevant facts and 2) instill confidence that is presents the best possible future for your needs and 3) make sense to you (well explained).... get another opinion.

In simple terms ISC is similar to "take two asprin and call me in the moring..." care. It is not a solution as it is destined to end up with sepsis etc. Overflow / Reflex / Rentention bladder issues are a work with a team to address and solve NOT a go away and try this type of issue. Bladder issues are not the core problem, but only symptoms. Unless the core problem is addressed, a paitent will be dealing with these symptoms always.

There is a key item that most are forgetting - in the womb, your bladder emptied without issue, yet after birth at some time in your life, something changed to cause these issues. That is what needs to be addressed.

The question with any form of medical treatment you required answered now, and not later, I keep posting is...

This level of query should be referred to your urologist / medical team - which should always include the question "What long term solution do you see in relation to my X issue" ... and if you get the answer "let's deal with this and see!" type of response, I strongly suggest that you find yourself another medical specialist.

Everything else is a stop-gap unless you have addressed the issue, ISC is not addressing the issue.
With urinary issues, these stop gaps can be lethal - i.e. your urologist will bury his/her mistakes.

In my own case, the count of urinary specialist I have dealt with are now in tripple digits until my core issue was addressed. I am still dual diaper dependant, but I do not have overflow or retention anymore - but void almost by reflex. I have endured multiple infections and three counts of blood sepsis and kidney shut-down, but am in the 12 percentile in the world in that I recovered from sepsis and partial kidney shutdown. I survive today with high intake of water to constantly flush my kidneys plus asprin / warfrin to thin my blood. As a result, I need diapers 24/7, disposables daytime and cloth at night - and wet them every 15-30 minutes, and mess them within 45-90 minutes of eating anything. What was the cause of the problem - a bacterial infection I picked up in a swimming pool when I was 4 years of age which damaged my urethral sphincter and caused retention and then overflow as I tore the internal bladder wall. The bladder wall was surgically repaired when I was 19 after the second case of blood sepsis - which was caused by I.S.C. After the third case, I went through numerous urologist quacks until I found one that would help me.... and if I wasn't so agressive and pushy with these people, I am sure that I wouldn't be here now.

There are solutions to this that may not need surgery, but it needs your team to work with you and fully investigate your issue.

 

[babykeiff]

I'm so confused I simply offered my advice based on what my urologist has told me. I use stomach muscles to urinate all things that point to a damaged bladder, tests have concluded it gives a tiny amount of response hence the overflow but other than that it's dead, I need ISC to void fully there is no other way. Not once did I say Retention was self induced, I implied that my reluctance to perform ISC when I was first diagnosed with retention has made my situation of kidney stones and infections self induced because I thought I was being sensible by just letting my bladder overflow and not putting a catheter in it, Retention can be caused by a whole host of things diabetes, multiple sclerosis, myasthenia gravis, nerve damage, trauma and yes a truck driver may be able to get a 1 ltr bladder but the key is they can get it out I can't, I physically can't if I try I blow my brains out trying to push. I'm on a wait list for alternative solutions and do you know which one he said was his last resort urinary diversion surgery as that causes the most amount of damage and leaves a lasting impact that's irreversible, my urologist has said there's nothing wrong with me sticking at ISC if I'm comfortable with that it's seen as the gold standard in urological management and isn't considered dangerous. Ive attached two links one is a PDF download from a UK hospital and the other is official coloplast literature

https://www.gloshospitals.nhs.uk/documents/15978/Intermittent_Self-Catheterisation_ISC_for_adults_GHPI0855_07_22.pdf&ved=2ahUKEwj729qJ4p-CAxUCUkEAHRxHDFUQFnoECA4QBg&usg=AOvVaw0sSjdfwjDhRz3fRyijMq07

Adherence to ISC is still a challenge

When it comes to treating bladder issues, intermittent self-catheterisation (ISC) has long been recognised as best practice treatment. But barriers to adherence still exist. Why is that the case?

www.coloplastprofessional.co.uk

I've a whole host of neurological symptoms ranging from migraines, ptosis and neuropathy just to name a few this isn't my only one.

The point of a forum is to share experiences I was simply sharing mine as was every other member in the hope that it could help the OP decide what they need to do. Sometimes making a big decision to do something to your body is a hard one I got offered these options urinary diversion surgery, suprapubic catheter or sacral nerve treatment, carry on catheterising.... I've a week to decide which one to choose and yes I'm going to discuss these options with my urologist who now has further test data Infront of him he can advise me based on a medical perspective but who better understands the workings/downfalls/advantages of a Catheter/nappy/indwelling catheter/urostomy/colostomy than the people who use them 24/7, maybe someone who has a urostomy regrets that decision, or someone uses nappies and finds that they get horrific rashes all the time so the only option was a urostomy and it changed their life for the better, only one way to find out and that's to ask the question. I think what most people mean when they say I don't need an answer is they don't need a medical diagnosis that's what medical professionals are for.

On a side note every time I've ever posted about having another UTI of which I've had lots this year something I can't remember if I've ever mentioned is that I've a high amount of sugar a lot of the time in my urine I dont know why I dont eat a lot of sugar but my body seems to glucose dump into my urine (it's a question for my urologist) high glucose in your urine is known for causing complications such as UTIs as urine is not despite popular belief sterile and the sugar gives the bacteria food which is what is normally absent from the bladder.

I am not surprised that a company that makes its profit from selling catheters has a page professing how good a catheter is. I have looked at the site, and nowhere did I find the problems of infection and/or infection rates.

Have a look at:-

• Catheter Infection Symptoms
• UTI
• UK Risks - NHS < I presume you have read this one?

and there are thousands more.

Lets look elsewhere. I presume that you wash your hands before eating. Why? If you didn't, the chance of infection is increased from the bacteria on your hands. As a result, you wash your hands. i.e. you are acting to prevent infection, yet early humans weren't as hygene contious and still survived. Does that mean that modern day we don't wash hands? The answer is no - as we know that if we fail, the risk of infection is very high which can lead to death despite the fact that saliva plus stomach has some protection against infection.

The urinary systems protection against infection is the constant washing of same when urinating. This is being defeated by entering a tube into same - so another methodolgy must be used. Otherwise, the same result will occur. Today, using science and empirical data, this has been proven.

What is so confusing about this? ISC addresses symptoms - your dealing with retention, overflow, a version of diabetes and numerous linked cell issues which is causing pain and slow organ failure - and your urologist says "stick a tube up your flute to drain same and call me in the morning / next week!" ... and you accept that from him/her! That, to me, is a problem.

I was in similar or worse situation than you - and for me, my bladder was oversewn to repair the damage, and my urinary sphincter was removed and a flap/valve was formed at the joint - this is urinary diversion surgery...

but advising you/another to do same is not a good idea as your/others internal issues may be different to mine. Your sphincter could be working somewhat, you and I do not know - your urologist should know. This is the core problem - seeking advice to X surgery over Y surgery. - this should ONLY be discussed with your medical team as they are the only ones that know your full history - both physical and biological.

What I can tell you is that long term diaper usage does not cause rashes once you have the correct diaper. The ABDL diapers are for play, and not for functional use. Rashes are caused by messy diapers / cheap diapers / wearing the same wet diaper for longer than functionally needed.... and this thread is not about diapers.

Everyone:
It is clinically wrong to advise another to undertake a surgery just cause you had it done. This is an anonymised internet support forum, not a doctors office. As a result, despite the best will in the world, one does not know anothers full medical history - which is the minimum required to offer medical / clinical advice. Those discussions should only be between the paitent and his/her doctor. If the paitent requires a second opinion, speak to another doctor, not an anonymised internet support forum.

 

[Pongoandperdi15]

Oh stop you take every point so literal and turn it back on me/us as ammo I was merely making a point that we all share different view points the purpose of a public forum....everyone is different we all have different bodies but we sometimes share things in common and can read a post and think yeah that applies to me, Doctors don't live with the problem so can be very autonomous and clinical in the methods they use and sometimes don't think about long term implications. I've had sepsis I've been there I almost died it wasn't fun and trust me I don't want to visit that area of my life again so my pattern of UTIs is a great worry for me but unfortunately i can't move the process of getting seen by the urologist along any quicker than it's already moving things in the UK are moving slowly at the moment I've had to wait for 7 months for a phone consultation to discuss the next steps so who knows how long I'll wait for whatever comes next. In the mean time the decision is catheterise to avoid infection or catheterise and maybe get an infection in a nutshell I have no choice so stop making out like it is one. Some people like the ones you've been calling out on here do effectively integrate ISC into their lives with very minimal complications I believe Pino is one of them it's not unheard of, yours isn't the only story in the same way mine isn't there's hundreds of members on this forum each with individual experiences to tell on how they each deal with incontinence on a daily basis and some are success stories and some aren't. I my self can't see ISC working as a long term solution for me as I can't get it worked into my life to mimic a regular bladder cycle due to working commitments so I'm probably going to have to decide on an alternative solution, I will more than likely go with sacral nerve treatment but guess what I might still have to do ISC with that as well because there's a risk it may not 100% get my bladder to empty.
Its clear to me that your experience hasn't been easy with incontinence and operations to fix things but you can share that experience in a constructive way, just offer what you have on your urinary diversion surgery it may have helped me make a decision on it.
As for this thread I'm out now

 

[Pongoandperdi15]

As for surgery ive just been comparing the options for my self personally, there's loads of options and some even still include using ISC it's called continent urinary diversion, I'm not advocating for it BTW I'm just saying there's more than one weapon in the arsenal when it come to the fight against incontinence it's not just a stop gap it might have been for you but for others it's a life line that's been proven to increase life expectancy by upto 25 years in patients with severe spinal damage.

| MSKTC

msktc.org

 

[babykeiff]

As for surgery ive just been comparing the options for my self personally, there's loads of options and some even still include using ISC it's called continent urinary diversion, I'm not advocating for it BTW I'm just saying there's more than one weapon in the arsenal when it come to the fight against incontinence it's not just a stop gap it might have been for you but for others it's a life line that's been proven to increase life expectancy by upto 25 years in patients with severe spinal damage.

| MSKTC

msktc.org

I disagree.

I have made the points and you keep coming back with "ISC is good / life saving etc". I do hope you survive the inevitable blood sepsis episodes, but will your doctors/medical team blaime you and complications and not ISC. I really do not care the reason, the results are the same - in intensive care fighting for ones life and as sick as a dog. It is one way to loose weight fast also, if that is your intention.

I've been there three times, and needed that to kick me in the rear enough so that I could get myself sorted and not accept the crap that medical was telling me. I just hope and wish you and others survive long enough to get sorted... and don't become another statistic.