Self Catherization

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New to this site. Hoping to find some support/encouragement as I'm struggling a bit emotionally. Also nervous and scared about the future. Little hard to talk about but here goes. I was diagnosed with an extended bladder in 2019. No idea I was retaining urine. I tried PEMF Therapy to shrink the prostate and believed I was having some success. Unfortunately, second week of April I could no longer urinate on my own. Weird how quickly it changed. I had a Foley Catheter in place but asked to have it removed and learned to self-cath while surgical options are being discussed. Been doing it now for a week. Messed up a few times and caused some bleeding but for the most part I've been able to do it. I feel broken and alone in this new experience. I'm only in my early 60's. Looking to connect with others who can relate or provide encouragement. I've spoken to a therapist but communicating with others in the same situation would be very helpful.

 

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Hi Diego

I am a 39 year old male in Canada. I am supposed to be self cathing due to urine retention thanks to multiple sclerosis. Honestly I have gotten enough guts to try it myself and then I read about the scaring etc from it it leads me fine in my decision to wear diapers 24/7. I guess it just comes down to what one is more comfortable with.

Welcome here as this is a great crowd and offer great advice. I hope you find what you are looking for.

Cheers.

Jason

 

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Thank you Jason. My situation is a bit different as I have Urine Retention so my only options are Self Cath or a permanent one. A bit frightening. Especially as it changed so suddenly. AS far as Self Cath...surprisingly easy to do. It's the emotional part that's a bit difficult for me. Appreciate the reach out. Kind of you to share your story. Good thoughts my friend.

 

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Diego you can share as often as you want here. Everyone here has experienced shame fear worry depression guilt and there's a different reason for everyone s condition from congenital to injury illness or age related and some other things im not even going to try to remember.
What I dont forget is this is a place to speak on your experience and relax, this is a process to become able to find solutions and mostly to find self acceptance of this amazing ever changing human body.ttheres difficulties but also difficulties overcome. Theres living with one's condition and there's trying therapies
Outside our ranks here there's a whole lot of incontinence going on, you know this by the great amount of advertising directed at it.
But here you are safe and free to be fully yourself.

 

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Well stated May941 or Maymay I think was your previous user name but don’t quote me on that because now I have something in my head saying nope it was something else lol.

Diego I guess my question back to you is what are you stuck between? Lol and congrats to you as you have obviously mastered the self cathing routine.

I guess what is the permanent solution. I laugh because if you have ms they basically said I should be self cathing otherwise you are going to have the odd accident. I guess my main concern about self cathing other than a urinary tract infection is the concept that everytime I would self cath is that simple process creates scar tissue and overtime the scar tissue builds up and then eventually they would have to do a procedure basically to widen my canal the urine flows through. Basically like a roto rotor concept. Lol doesn’t sound like fun.

And in tandem of that they want to inject my bladder with Botox so the urges and muscle compressions do not occur. I basically have said no thanks I am fine with everything how it is currently. Lol.

Cheers

Jason

 

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I've self cathed for years. It really gets to be no big deal. I bled some at first, too, but you get used to it. I've found that Coude catheters (with a longer curved tip) work much, much better for me - if you haven't tried them, they might be worth calling your doctor about. They're specifically intended to help guide the catheter through the prostate.

As far as feeling broken, please remember that you are still the same person you've always been, and a medical problem doesn't change any of the important parts of who you are. It can take a while to come to terms with it, though, so go easy on yourself if you're struggling to find self-acceptance.

You'd probably be surprised how many people have similar problems, but nobody talks about them and we all end up feeling alone.

 

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Itapilot:

Your post really helps as I do feel alone. Makes me feel a bit better that you had some bleeding as well but still mastered it. I've been using a pointed tip but the nurse who showed me didn't mention it had to be facing up so I poked myself pretty bad on the fourth day near the bladder. I'll look into the Coude Catheters. Appreciate the suggestion.

My struggle is how quickly my situation changed. I could pee on April 6th but couldn't on April 7th which led to a Foley Cath for three days and then on my own after that. I asked my Doctor for a support group but he only knew of ones for patients with cancer. I was surprised as emotionally and mentally this is a lot to conquer in such a short timespan.

A nurse told me men don't like to talk about it but that doesn't work for me. Going through this knowing others who have adapted takes off the edge for me. Considering TURP Surgery as it gives me an 80% chance of urinating on my own again but still at early stages with more tests to follow. Thanks so much for sharing with me. It helped.

 

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@Diego hi there, Im 58 now, but when I was 55, I went to bed one night after having a pee, but couldnt do the same next morning. I had a foley for about a month while I waited for surgery. Anyway, you are not alone and yes, it can happen very quickly! Cheers phil

 

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Jason (Jwh1)
I am a bit peeved the admin changed my user name as my friends cal me maymay but yes I'm now a tidy little may941

 

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Phil

Thank you. Applaud you for staying on a Foley for a month. My "Foley Experience" was the motivation for me learning to self-cath. I didn't want to go back on it and had no other choice. What type of surgery did you do?

Diego

 

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Some people find they have incontinence after a Foley - after serious surgery, long stay in ICU and/or coma,etc. It seems to require a longer use than you had, but we're all different. That can slowly fix itself, or it did for me. We seem to getting good input, here, so stick around.

You're still MayMay! That's what counts!

 

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@Diego I had a turp first, this led to sepsis and soon after I needed a bladder neck incision. My urologist thinks that so much trauma in 3 months has led to OAB. A run of bad luck and catching an antibiotic resistant bug.

 

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Crappy luck literally is an understatement physlink.

Hope you are doing as well as you can be nowadays.

Cheers

Jason

 

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In an earlier thread, several members called "OAB" the equivalent of "We Don't Know". Well, yeah, it's "overactive." Why? Why don't they tell us? If they knew, maybe they could actually do something about it. You think?
Did he offer anything that sounded like it would help? How about him saying something like: "It's an overactive bladder and we don't know why, or how to cure it. There are people trying to find out. Keep your eyes and ears out, don't fall for quack answers. We're going to be calling a lot of patients when answers come along."

 

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AlasSouth, I've heard the same thing re: 'we don't know' but my urologist did say everything you have suggested. In my case, the cause is from a brain injury in 1988 and has gone from not as bad as it had been initially (down to minor daily loss, but bad accidents less than weekly) but more recently, back to daily accidents without exception for the past 5 or 7 years (I've lost track). He did say that it was permanent and would only continue to get worse (but then it got a bit better- sometimes only one incident per day, but with the occasional very bad day of 10 or more incidents) to which he responded that it can settle down for as long as a decade in some cases (I wish!) but the research simply doesn't give us answers at this point. In my case, there was damage to my urethra, but there are also the neurological factors at play. A couple years ago, I saw improvement in my vision in problems caused by the brain injury, so I hold onto hope for the same for all of my symptoms including the incontinence. Don't lose hope, I always say...

 

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Good to hear - about the Urologist, anyway. He sounds like a really good guy.
Had brain surgery. Incontinence very minor before, very bad after. It has improved (over 2 + years) to mostly just minor (so far. Fingers crossed.) They did warn me it was a tricky spot of the brain, and there was a short list of things the removal of the growth could affect. Incontinence was one they weren't sure of, but they did mention it. This was the neurosurgeon, not a Urologist. Or his PA, anyway.
There's another growth they aren't taking out - it isn't growing, the other was benign, and they more or less agreed it was dangerous to remove. Right now, I'll put up with a little incontinence rather than lose vision, speech, etc. I didn't ask if there was a danger of becoming a vegetable. With my luck, it would be kale. Yuck.

 

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Yeah! Kale is terrible. But it's really good for you, so I use a bit in my fruit smoothie everyday. Too bad it doesn't cure bladder issues.

 

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@Jwh51 hi Jason, interesting that you say crappy bad luck, as bladder spasms can be so strong that I leak front and back! I am waiting to try sacral nerve modulation to see if it helps. My urologist thinks that my OAB has been triggered by nerve damage. She explained that there are nerves only mm's away from where prostate tissue is removed. In some men the trauma and swelling can irritate close by nerves. She also thinks that getting sepsis from an antibiotic resistant bug can damage nearby nerves. Anyway, it is what it is, I had to have something done as I didn't want to spend the rest of my life with a foley catheter. I know from my various stays in hospital that some people have much worse problems, cheers, phil

 

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I have had to self cath for 10 years. 2 years before that I had a chronic Foley catheter. My urology PA mentioned to me the other day, if you can no longer self cath, we will need to place the Foley. Which I understand. Yes with self cathing you still need protection. I have come to that time I do need tape protection all the time. The nurse said yesterday after I was in for her to place a Foley ( Its either a Foley or dilation) that she felt the tape protection was better with the Foley so it could be adjusted so not to hinger the Foley as it works.