Forum

Oh the Relief of Being Understood

After more than a decade of uti’s, I’ve finally seen a Urologist who has a terrific understanding of MS! Within a 30minute appointment, she’d read and understood my years of notes and knows the brain and spinal damage of PPMS is ongoing and irreversible.

She was discreet, thorough and decided a Supra Pubic Catheter will improve my quality of life. She actually stated I’ve been sent around the system more times having the same tests giving the same results (typical of nerve damage).

This wonderful lady also referred me to a specialist for my poor bowel due to spinal nerve damage. A sort of implant for sacral\anal stimulation. Gosh, I hope that’s the right title.

Chrissie x

3 Likes

so are you going for an spc then? i had mine around 4 years ago and overall it is 99% better than before without it.

there are some down sides, like having a pipe sticking out of your belly and finding the right clothes to accommodate it…easy, baggy trousers and long tops…

there can be some by-passing…like if the tube /catheter gets furred up and needs either a wash out or a change…

i get mine changed every 4 weeks to stop any sticking problems.

it may be you have teething problems, but get passed them and you`ll be fine!

pollsx

Ah bless you Polls xx. Soon as poss for SPC, the lady I saw was Mrs, not Dr so I assume she’s a surgeon consultant like most Mr’s. She said will be very soon and also mentioned the possible problems but improved quality of life will be worth it. Yep, loose wide leg flowing trousers & tops may bring my old days of “Hippy style” clothes I wore in the 70’s … every cloud eh

Chrissie xx

I had mine in early March Chrissie. We’re calling it ‘outside plumbing’ in this house. There’ve been a few little teething troubles, but honestly nothing major. Just small things like me not paying attention when the nurse was applying a dressing and then not knowing how to do it the next day (the clue is that you need there to be a split in the dressing to go round the tube sticking out of your abdomen, so of course you need to cut that split, with sterile scissors, which I’d not been given!). I also had a moment when it didn’t seem to be draining, but that resolved itself. Oh and twice I forgot to close the tap when I’d emptied the leg bag. The clue comes when you discover a soaking wet foot and leg. And if you have little sensation in your leg more leaks than you’d prefer!

Clothes are a tiny issue, but as Poll said, wide trews and baggy tops do the job. I’ve also bought a couple of long hippyish skirts. Yes, our inner hippy comes into its own with an SPC.

Any queries, problems, thoughts, any of us who’ve got one will do our best to help. Obviously, I’m not an long time user, but both Poll and Shazzie have been brilliant at answering my questions.

Sue

only too glad to help a fellow outside plumbing user!

pollsx

It’s a simpler solution for the guys. Put a sticky condom on my John Thomas and plumb that into a leg bag.

We still forget to close the tap though!

I was given a date for spc in a day clinic but when I rang to confirm, I was asked how MS affects me. When they realised I have a lot of uncontrollable tremors and jerks, it was recommended I have a general anaesthetic.

I’m on the GA waiting list now. After the amount of discomfort from regularly seeing blood in my pee and an abundance of uti’s, I’m sure the spc will resolve things.

But… I once had a large kidney stone that got shattered through a lipotripsy process. The stone led to bleeding in my bladder, which stopped after the stone went. I’m concerned all my recent bladder problems could be another stone.