Hello friends,
Like many MS people, I've been dealing with bladder issues for many years. It was one of my earliest symptoms before I was diagnosed with MS. I have tried every medication with little or no success. My urologist thinks that a suprapubic catheter is best way to go. (I am unable to straight cath due to an anatomical challenge). Does anyone have any experience with suprapubic catheters? I would appreciate any perspectives. Thanks
hi, I’m sorry I’m no help I do hope you find what works best for you. To help I drink lots of water and whenever I slightly get the feeling I start my way to the bathroom cause it can get like AH I gotta go now. I also do kegal exercises,like the ones when pregnant, they strengthen the pelvic floor, I think they help. Best wishes in all you do
I got a SupraPubic catheter on April 18th after retaining 1.2 liters of urine. It has been a nightmare ever since. Multiple UTIs including the last one that went sepsis. The doctor says my bladder is colonized and we cannot do antibiotics all the time or it's going to get colonized. Now, I've lost all my strength,can barely hold myself up in my power wheelchair. I got the SupraPubic catheter because of supposedly less infection. I originally told the urologist that I never wanted to pee again when deciding on the catheter. I know I have a UTI when I start peeing normally a bit. I'm progressive MS along with other autoimmune crap unrelated to the MS.
I know a couple of people who say that despite their anxiety and trepidation about doing so, getting a supra-pubic catheter was one of the best things they've done for dealing with MS related bladder issues - especially as urethral catheters are virtually guaranteed to be an ongoing problem with UTIs no matter how careful people are with hygiene. With supra-pubic catheters an obsession with hygiene is also essential, but because it is located well away from "bits that sweat" etc, it can apparently be a bit easier to manage.
I understand that ongoing medication with hiprex can help keep UTIs at bay when someone doesn't have a catheter, so would imagine the same would apply when a catheter is used.
While this might sound a bit strange, if you have a Facebook profile maybe search FB to see what closed groups exist for people with SP catheters - one of the people I know said that they've joined a group and have got some really useful information, tips, and support from the group. If you do this then just make sure that it is a closed group otherwise your entire bunch of FB contact and friends (in fact everyone who has a FB profile) will find out all about your bladder woes...)
I understand how hard this is for you. I use the bathroom before I leave the house and always find out where the bathroom is wherever I go. I hope that helps.
Leslie
Hi, calcman! I am unfamiliar with this catheter. However, my urologist wants to do a "nerve test" (ok, you nurses in the group will know the technical terms) later this month. If my insurance approves it, I will wear two small wires for a week in my lower back. After that test, if it works, I will have a little device implanted beneath my skin (around my tailbone) that works "with" my bladder, by way of a little handheld device. I am told the implant contains a battery with a battery life of 10 years. Heck, I may expire before the battery! Anyway, something to think about. A catheter causes so many infections, doesn't it?
Good luck to you. Let us know what you decide!
Hello friends, I would like to thank everyone who provided me with good advice, comments and suggestions. It is good to know that others have my back. Thanks
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