Suprapubic Catheter and me

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Tomorrow at 1pm I have an appointment with my urologist about getting a Suprapubic catheter. I’ve done research and talked to a lot of people and everyone seems to think it’s a good idea. I’d finally be out of diapers and it’s reversible if need be. Wish me luck.

 

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I hope that your appointment goes well. If you go ahead, it will be interesting to find out how you get on with it, good luck, Phil

 

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Be sure to ask how long you have to wait until you can go to a flip flow

 

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@justej
A Suprapubic catheter has a risk factor for infections.
Before you go with that, you might want to check into the ATOMS device.
The following YouTube link explains the procedure in 2:30 and other video's show the entire procedure.

 

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@WilliamMartin yes I know about the risk of infection. I am transgendered so I have female anatomy. I also have a paralyzed neurogenic bladder so the atoms device will not work for me.

 

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Good luck.

 

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@sport - thanks

So here is basically the rundown. My urologist thinks that I’m emptying ok but my sensation to go is just not there. Hence the paralyzed neurogenic bladder. She said that a SPC would be a good option but wants me to speak with the doctor that did my urodynamics test first. So that is in 3 weeks. She said that I still may have leaking and end up having to wear diapers so I dunno. I may just stick with that. I just want an easy solution.

 

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I was just told by my Urologist that I could still have some urethral leakage with a flip flow. So it might be a valve and I can downgrade to a pad. I'd just like to wear underwear again.

 

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@NoCans - hear hear. From the sounds of it though for me since I don’t have the sensation I will still get enough urethral leaking that a diaper will be needed. I dunno the more I think about it and the fact that I get infection at the smallest thing I’m not sure I’ll risk it. As much as I would like to save a hundred bucks a month.

 

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@justej I hear ya, my urology team has wanted me to have SPC, but I till keep going yet with CIC and Foley back up. I did send that flip flow to my urology PA, she said you will still continue with bladder spasms as my cranky bladder wants to empty 363 times per min! (joking, but close), I could stop CIC for a few days or several to not have 6-8 CIC per day. Like you not sure. Oh yes, diapers on all the time, sooo,

 

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I’ve noticed at least with me when using a catheter I can get along during the day with just a light guard when a few drips happen. I love the flip flow valves. It is nice to be able to just drain my bladder when I am able to and not when it decides to have a mind of its own. Hope everyone is well. I haven’t posted much lately. Doing some minor fix it stuff around the house and have been busy at work. Hope everyone is having. Good 2020 so far.

Jim

 

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@jrpoorman good to see you on the forum again, cheers Phil

 

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Hi Phil,
Love the chats and all my friends here. Had allot going on for the last couple months and have been trying to keep up. Hope you and everyone else are having a good 2020 so far. I have to go get primer and paint. So nice to have a Monday off!
Jim

 

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So I tried to cancel my appointment with the doctor and they really want me to come in and just “talk”. I don’t know if I want this thing. I’m dealing with an infection right now that resulted in 4 cysts on the lower right side of my body (including on my residual limb. Resulting in me not being able to walk). I get them a lot and I’m afraid I’ll get an infection with the catheter. I dunno

 

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Hi EJ,
Wow, that sounds painful. So sorry to hear that is going on. May be worth talking to doc for sure.

 

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I think once you get the right routine and product you should be okay. Definitely nice to have some dry time.

 

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Thanks Jim it’s extremely painful. I discovered one today on the crease of my inner leg thinking at first it was diaper rash but nope. It’s a cyst. I really don’t think a catheter is right for me. I think I’m going to just suck it up and get the MegaMax in blue because that actually worked for me.

 

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They are really good and I like the blue ones. Sometimes it’s is just nice to have a diff flavor.

 

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I have MS and was having major retention issues that resulted in 4 UTI’s in 4 months at the beginning of last year. I tried the intermittent catheters, but that just didn’t work for me. I’m also in a power chair full time which didn’t help. Anyway, after a lot of soul searching, I got a suprapubic catheter last April. It was, for me, the best decision. I’ve had no infections. I use a flip flo valve during the day and a bag at night. I don’t always feel like I need to go, so I make sure I go every 3 hrs or so depending on how much I drink. I do have some urethral leakage occasionally so I wear a pad when I go out. I actually had to educate my urologist on the flip flow. He had never heard of them. Good luck on making your decision. It’s not an easy one to make - I understand.

 

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The flip flow valves are pretty great. Someone should have started making them when catheters were first invented. Nice to not use a bag all the time when using a catheter. It does help to use a pad though to catch occasional drips or leaks. I like that the valve doesn’t leak and they are easy to clean. Have a great day everyone.