I am sure that we have all done this and gone over our routine time for catheterizing or dont catheter as often as we should. Yet, this is one of our most important regimes that we need to keep on top of.
Urinary issues related to Spinal Cord Injury is a big killer and one thats sets us apart from the non SCI population. We are trying to avoid the risks of Urinary tract infections, kidney function issues and bladder cancer..all of which are increased risk due to Spinal Cord Injury!
This article touches important issues around regular self catheterizing
Questions and answers!
Q: Todd, why do some people have a hard time following their doctor’s orders regarding catheter use?
A: You know, that’s a good question. Sometimes, I hear from people who tell me that their doctor has written them a prescription that says they should use catheters four times a day, for a total of 120 times per month [give or take].
The trouble arises when that patient has a care regimen that calls for self-catheterization four times a day, but that person is only using catheters when they think they should.
They might be doing it twice a day instead of the prescribed four times per day.
Q: What could happen if someone isn’t following their doctor’s orders and is cathing less often than what was prescribed for them?
Do your body a favor and listen to your doctor’s orders when it comes to self-catheterization!
A: My personal doctor warned me about this. He said that if your bladder stays too full because you aren’t using catheters often enough, you can cause damage to your kidneys. And, he also told me that cathing less often than prescribed can cause other risks, like an increased chance of urinary tract infections. Take my word for it, UTIs are no fun at all!
In my personal case, if I didn’t use catheters as often as my doctor prescribed me to use them, over time I could have ended up on dialysis.
I have diabetes, and thank goodness, as of now I can control it with my diet and by following my doctor’s orders as prescribed when it comes to urinary health.
For me personally, i can catheter approximately 5/6 times a day as an average and this works quite well. In the UK catheters are given without charge so we are fortunate in this respect and there isnt a limit on how many i can use.
It's funny because I was told to catheterize 4 times a day but normally I do it twice a day. Some days I do 3 but 4 is pushing it. For me my bladder still empty's itself so I don't have to worry about my bladder being too full but I still retain urine even after my bladder emptys so it's probably a good idea for me to catheterize and get rid of that remaining urine to prevent bacteria growth.
It's funny because I was told to catheterize 4 times a day but normally I do it twice a day. Some days I do 3 but 4 is pushing it. For me my bladder still empty's itself so I don't have to worry about my bladder being too full but I still retain urine even after my bladder emptys so it's probably a good idea for me to catheterize and get rid of that remaining urine to prevent bacteria growth.
It's funny because I was told to catheterize 4 times a day but normally I do it twice a day. Some days I do 3 but 4 is pushing it. For me my bladder still empty's itself so I don't have to worry about my bladder being too full but I still retain urine even after my bladder emptys so it's probably a good idea for me to catheterize and get rid of that remaining urine to prevent bacteria growth.
I just don't have the time to cath that often!
So DJ, can you tell me what your going to do when you get a UTI that gets into your kidneys, will you have time to spend a week or two in hospital?
Bladder management is serious business and this thread is to remind our members the importance of regular catheterizing. If someone dosent have time then time has to be made because UTI's can cause death in extreme cases and urologist advice really should be followed...
I have to remember this too. I can usually feel when my bladder gets full, and I cath when I feel that, but sometimes I don't feel it, which is why I have an alarm set for every 4 hours on my phone to remind me to cath. Now that I have a prescription of 150 catheters per month, I don't have to stretch my bladder & risk backing up into my kidneys. I had so many UTI's and leakage when I was only supplied with 120 catheters (enough to cath only 4 times a day).
Thanks to my urologist, I've only had one UTI since switching to cathing with a Speedicath Compact 5 to 6 times a day.
I have to remember this too. I can usually feel when my bladder gets full, and I cath when I feel that, but sometimes I don't feel it, which is why I have an alarm set for every 4 hours on my phone to remind me to cath. Now that I have a prescription of 150 catheters per month, I don't have to stretch my bladder & risk backing up into my kidneys. I had so many UTI's and leakage when I was only supplied with 120 catheters (enough to cath only 4 times a day).
Thanks to my urologist, I've only had one UTI since switching to cathing with a Speedicath Compact 5 to 6 times a day.
Im pleased you are finding the benefit from the catheter change Knight. We already have a messed up bladder so no point in causing more damage, maintenance is so important.
I wish I could only cath 4 times a day. I have to cath 10-12 times a day! I don't leak at all,and the only way I know when to cath is when I start getting dysreflexic. I usually have volumes between 400-600ml which is reasonable. In the morning I have to catheterize every hour. I drink lots of water and only one cup of coffee. I have tried drinking less water then I feel crappy and get more UTIs. I have no hand function so I use a clip to hold the carheter. It is a difficult process and frustrating. I often get fed up and ask my wife to put and indwelling foley in which also causes UTIs. The meds don't work or I get side effects. Blader and pain get me down the most. I am open to advice, but I have tried many different avenues to make things easier.
It's funny because I was told to catheterize 4 times a day but normally I do it twice a day. Some days I do 3 but 4 is pushing it. For me my bladder still empty's itself so I don't have to worry about my bladder being too full but I still retain urine even after my bladder emptys so it's probably a good idea for me to catheterize and get rid of that remaining urine to prevent bacteria growth.
I just don't have the time to cath that often!
So DJ, can you tell me what your going to do when you get a UTI that gets into your kidneys, will you have time to spend a week or two in hospital?
Or, DJ, risk being on dialysis because of preventable kidney damage? Butiki's estimate of hospitalization time is conservative, and you can really die from this (sepsis) pretty fast. I have been in kidney failure twice, and it is terrifying.
A big part of the problem, as Knight wrote, is not getting enough catheters prescribed, even to include a few that might get contaminated and have to be discarded, as well as give you enough to cath sufficiently often. BTW, Knight, setting alarm on cell phone is great for timing caths and meds!
Another issue is cost. Not all insurances will pay for the number of catheters you need, and then some people try to reuse what should be disposed, creating high risk of UTI. The excellent catheters that Knight is using (my first choice, too) are very costly, especially when one's income is limited and it is out-of-pocket. I am spending 200-300USD/month for incontinence supplies.
Third challenge is finding the right catheter for your need, which some suppliers make easier by providing samples for new users. This is such an individual decision that experimentation is the only way to find what best works.
Fourth problem is scheduling your life around potty time. Like kevin, I hydrate thoroughly to help avoid UTIs and limit caffeine, but that means having to empty more frequently. I am at about the same number of times daily as you are, kevin. Cathing takes time, and requires a hygienic set-up space, very difficult if you are not at home. Bathroom frequency and clean up time/space is my nightmare at work--if one has to explain oneself, you are already "losing", maybe your job. kevin, I really feel your pain, but have not solved this problem for myself. Indwelling Foley creates most risk of UTIs, according to my urologist. Have you considered a super pubic catheter? Because of uncertain hand function, lack of sensation in hands and privates, and also double vision which makes using a mirror (must for females) most challenging, I have been advised that a SPC might be the only option for me to realistically consider. I am still being evaluated to know if I must cath, based on bladder retention levels and whether/how much is refluxing to kidneys. While the thought of a SPC is repugnant to me, I will embrace it if it means being healthier/alive!!! When I was being discharged from a recent hospitalization, I was waiting for the nurse to remove my IV line. Looking at it, I thought, well how much worse is it to see a tube coming out of my belly than to see this? Of course, with an IV you're not carrying around "blood bags" like having a leg bag with a SPC... I was told by my urologist that if stoma is maintained faithfully, and tube is changed on schedule (generally every several weeks), that a SPC is fairly convenient for most people and has the least risk of UTI of all forms of catheterization. And a SPC is easily reversible if you decide it is not the way to go for you.
My personal challenges if I have to cath, and a SPC is the safest way to go, are scary. My disease and the drugs I take for it prevent normal healing, so I am far more likely to have inflammation and probably leakage around the stoma. Because I am immune suppressed to keep me alive with my disease, the risk of infection is much greater. My severe allergies to most antibiotics, and the resultant GI mess that occurs when I take the ones I am not allergic to, make treating infection much more complicated. So, the most effective chemo that I am currently taking, the one that may actually restore some quality of life, would have to be discontinued if I must cath because of great risk of life-threatening infection. Add to that my bladder is a bloody mess (description, not cussing), and it may need to be removed. So wondering where the urine will go then! To pee, or not to pee--that is the question.
I wish I could only cath 4 times a day. I have to cath 10-12 times a day! I don't leak at all,and the only way I know when to cath is when I start getting dysreflexic. I usually have volumes between 400-600ml which is reasonable. In the morning I have to catheterize every hour. I drink lots of water and only one cup of coffee. I have tried drinking less water then I feel crappy and get more UTIs. I have no hand function so I use a clip to hold the carheter. It is a difficult process and frustrating. I often get fed up and ask my wife to put and indwelling foley in which also causes UTIs. The meds don't work or I get side effects. Blader and pain get me down the most. I am open to advice, but I have tried many different avenues to make things easier.
Wow kevin thats what you call hard work and restricting!
I admire you for attempting to self catheter but i know how frustrating i find catheterizing and I do think guys have it worse in a way. For us females, the bladder is closer.
This routine over runs your life though...So your options are drinking less but makes you feel unwell and leaving your bladder to fill more? Have you been offered any surgical options? Has your urologist suggested anything?
wavewolf...i didn't realize your bladder routine was like this...thats exhausting!
Would either of you consider a Supa Pubic catheter?
Yes wavewolf, your advice is great and you are so right about the dangers and issues due to UTI's and kidney/bladder problems..It is still a big killer of people with Spinal Cord Injury!
DJ, it would be such a shame for you to learn from your own experience rather than that of someone else's but its your body and your choice.
wavewolf...i didn't realize your bladder routine was like this...thats exhausting!
Would either of you consider a Supa Pubic catheter?
Please see my last two paragraphs--not an easy choice for me. I will have to decide after video urodynamics, happening early summer, which will determine how seriously my kidneys are impacted.