Considering a suprapubic catheter - My MSAA Community

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Considering a suprapubic catheter

Eleyne92 profile image
26 Replies

Due to a combination of MS, age, and other physical issues, I am seriously considering a suprapubic catheter. My neurologist agrees that this is probably a good idea, but the urologist wants to wait awhile more. (I saw him last September) I am tired of having to plan my life around my bladder and pads/depends are out of the question. Skin issues, among other reasons.

Has anyone here had the procedure, and would you be willing to share your thoughts/experience?

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Eleyne92 profile image
Eleyne92
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26 Replies
WAshingtongirl profile image
WAshingtongirl

Eleyne92 , I have a male friend with MS who has one. Prior to that, he self-cathed for years. However, an increase in UTIs and scar tissue from prostate cancer made the suprapubic catheter necessary. He loves it. Has had no problems with it. 💕

Eleyne92 profile image
Eleyne92 in reply to WAshingtongirl

Thanks, WAshingtongirl .

jimeka profile image
jimeka

Hi Eleyne92, my dad had one, he had prostate cancer and it became a necessity. Initially it hurt a lot, but then he loved it because it didn't matter where he was he could pull to the side of the road, open the tap and then be on his way. No one knew he had it until he lifted his trouser leg up. Let us know how you get on, blessings Jimeka 🦋 🌈

Eleyne92 profile image
Eleyne92 in reply to jimeka

Thank you, jimeka .

Morllyn profile image
Morllyn

I do not know about Depends but, my daughter is multi handicapped and wears adult briefs (diapers) that have no plastic and are waterproof. They are a paper product and she never has breakdown. Just a thought because catheterization can lead to infections.

Richardgiam profile image
Richardgiam in reply to Morllyn

Brand pls?

Morllyn profile image
Morllyn in reply to Richardgiam

FitRight Plus I by Medline is what she is wearing now but there are others out there.

Hope find something that works for you Richardgiam .

Eleyne92 profile image
Eleyne92 in reply to Morllyn

Thanks, Morllyn .

I've tried both pads and incontinence briefs, but neither work for me ... because I can't get them on "properly". I know, that doesn't make much sense. I have problems with both knees and feet and can't stand up straight to pull up my clothes with ease. The briefs are overkill for my needs and they tear up just trying to get them up or down. Pads wad up or roll up, then the adhesive sticks to my skin. Then I have real skin issues, not just reaction to the pad itself.

I even investigated the reusable/'green' period pads and panties, but they either don't stay put or are impossible to pull up and down. I'm tired of and depressed about living with damp clothing, not to mention the smell.

WAshingtongirl profile image
WAshingtongirl in reply to Eleyne92

I'm really sorry, Eleyne92 . Based on all the problems you're having, the catheter sounds like it would really help you. I wonder why your urologist wants to wait, especially if your neurologist agrees it would be beneficial for you. I have a bladder stimulator to stave off self-cathing due to chronic UTIs. I can't imagine what you must be going through. You're in my thoughts and prayers. 💕

cheshcat profile image
cheshcat

I'm not sure on your skin issues but I have ridiculously sensitive skin and had to start wearing inconstancy pads 24/7 a few months ago. I found a brand that has given me no issues (Tena). It might be worth a try?

Eleyne92 profile image
Eleyne92 in reply to cheshcat

cheshcat

Thanks for responding. I tried the Tena pads and liked the way they felt, but they didn't stay put. They rolled or wadded up and stuck to me. And the briefs were way more than I needed, besides being impossible to pull up without tearing. (Between MS atrophy and weakness and structural deformities, I have trouble standing and pulling up my clothes one handed.)

cheshcat profile image
cheshcat in reply to Eleyne92

I hope the catheter could give you a better quality of life. I'll be thinking of you. And you are right, they do bunch like that! I went to the "liner" ones, as my bladder really is pretty decent most of the time, I don't have actual urination, just needed to catch small leaks or the occasional - oh I see a toilet, I should pee but maybe I'll go grab this thing, oh....guess you went ahead and started body.... - type thing.

erash profile image
erash

Eleyne92

I helped one of my former MS patient make the choice to have a supra public cath. He no longer had the dexterity to self-cath and was getting numerous UTIs.

It reduced the frequency of his UTIs and did improve the quality of his life (IMHO).

It's a relatively minor surgical procedure but I'm sure it's a huge personal decision. Best of luck.

Eleyne92 profile image
Eleyne92 in reply to erash

Thanks, erash

Improved quality of life is my hope.

I am a female, I have self cathed for 15 yrs and have had many UTIs, but I do have control over my time and toilet with the self cathing. As for skin breakdown, I hope you have tried Calazime it is very good. I have pressure skin problems 'not' due to leakage because I cath.

Eleyne92 profile image
Eleyne92 in reply to

Thanks, Hidden

Unfortunately, it would take another set of hands for me to self cath. 😜

I'll check out the Calazime though, and see if it'll work for me.

Richardgiam profile image
Richardgiam

I have had one for 3 years. some problems but not bad. a few infections and it seems I always have a low grade infection with it so I am on a daily antibiotic. I change the cath once a month at home and it is easy to do. I am always having bladder spasms so I take myrbetric and also have my bladder injected with botox each year. those two things help. I still wear a depends because I can still leak because of spasms so that's a bummer. my Cath drains into a bag all the time so I empty that as needed. others don't have my issues and I still like having it rather than a normal Cath or just going in a diaper .

WAshingtongirl profile image
WAshingtongirl in reply to Richardgiam

Richardgiam , my bladder spasms drive me nuts. Myerbetriq didn't help, but Gabapentin does. Sorry you have so many issues with your bladder.

cheshcat profile image
cheshcat in reply to WAshingtongirl

My bladder spasms are one of my worst symptoms some days. They can hurt badly. I have been waiting until I get my MRI results but I need to make an appointment to finally see a urologist.

WAshingtongirl profile image
WAshingtongirl in reply to cheshcat

You ought to make that appointment, cheshcat . 😉 Regardless of whether or not you have MS, a urologist should be able to determine what you need in order to help you with your bladder problems. A full bladder work-up may be required. And if so, those tests can take some time to schedule, etc. I hope you get some answers and relief. 💕

cheshcat profile image
cheshcat in reply to WAshingtongirl

Yes WAshingtongirl I really do need too! I have been putting it off waiting to see the new neuro and now waiting for my MRI's to be done but I really should have at least called and started the process. It goes through waves where it will really bother me, then go back into the background of only mildly annoying. If I over do it in a day, my bladder can be counted on to pay me back though!

Eleyne92 profile image
Eleyne92 in reply to Richardgiam

Richardgiam

Thanks for your input. And you brought up a concern of mine. I don't think I have a spastic bladder, but I have mild-ish stress incontinence. I will definitely need to ask the urologist about that because that's one of the reasons I'm considering the cath. Wearing a pad or depends doesn't work for me for several reasons.

Richardgiam profile image
Richardgiam in reply to Eleyne92

My bladed was never spasmstic until the SPC. Now it seems Botox and mybetriq help.

WAshingtongirl profile image
WAshingtongirl in reply to Eleyne92

Has your urologist tried oxybutynin or myerbetriq or anything similar to that for the incontinence, Eleyne92 ? I assume you've had a full bladder work up to determine the cause of your incontinence? I ask because for years I was treated with various drugs (oxybutynin, myerbetriq, etc) because my previous urologist thought that would help prolong my need for self-cathing, when it turns out incontinence wasn't my problem after all. I have a neurogenic bladder that doesn't empty. I'd leak when it was full (without knowing it was full), and I'd go to the bathroom every 45 min not because I had to, but because I'd trained myself to 'go' so I wouldn't have a leak. A full bladder work up showed the real problem and explained why the incontinence drugs didn't work for me. If you have already had the tests done, I'm sorry for duplicating what you already know and have gone through. I really hope your urologist can provide the help you need. 💕

Eleyne92 profile image
Eleyne92

WAshingtongirl

I haven't had any studies or evaluations done, yet. I'm sure the urologist will want to do some. I'm pretty sure a good deal of my problem stems from being post-menopausal, having had 7 kids, and some body structure abnormalities which create a kinked hose effect. I try to drink a lot of water, too.

I have a whole laundry list of bladder related issues we will have to investigate, I'm sure.

WAshingtongirl profile image
WAshingtongirl in reply to Eleyne92

7 kids...wow! I hope your doc can come up with a satisfactory and simple fix. 💕

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