Having supra-pubic cath placed on Tuesday

[sjc314]

I found a support forum in England which helped.

Found it: ostomyland.com The forum won't let me post the url. Sigh.

There are many others.

[anneth121]

I am 68 & have PPMS & self cathed for yrs. I am now wheelchair bound and have caregivers nite & day for transfers. I skimped on liquids for so many yrs so I wouldn't have to cath so often. Then the MS got so bad that I had to have a caregiver help me get on & off the toilet. No drinking after 6at nite. Dry swallowing nite pills. Many UTIs even using gloves, sterile caths & wipes. My bladder is full of phosphate crystals. I had one urologist say it was like looking into a snow globe.

Finally got a spcath. What a difference. Can drink all the time! Skin looks better. Pills easier to swallow. After experimenting I now wear a bag with cover & hose cover hanging on my wheelchair during the day & a nite bag down my leg with an extra long hose for turning. When a visiting nurse comes once a month, covered by my health insurance Yeh! she changes my cath & ballon and flushes me. After flushing me the phosphate crystals scratch the inside of my bladder & there is blood in my bag. I can even see clots in my hose. They look scarey sometimes. Glad they are not going through my veins!

The pink urine lasts about 2 days then is gone. My body doesn't like something foreign in it - took forever for my pierced ears to be happy - so I don't know if my stomach will ever be happy with the hose. My hole weeps & seeps & had formed a skin flap to try & cover the hole & had to be cauterized - not pleasant - to stop the skin flap from forming.

My power wheelchair can lay me flat so I don't have to transfer to my bed. The visiting nurse ordered all the supplies for me & they are in my house waiting for her to arrive. About every 6 months I go to my urologist & he does my cath change & asks about my life. Have had one UTI for some reason but lab work showed the right antibiotic & went away. My toilet is used as a convenient bench for changeing my clothes! All & all I'd say my spcath is perfect for me. Enough talking!

** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **

[Evolvn916]

Sjc314 and Anneth121....Thank You so much for your detailed responses. I really appreciate it.

[22cyclist]

Yes thank you both for your responses, they have helped me a lot too.

Lisa

[22cyclist]

Any tips on how to get the clamp on the bag to loosen up when it gets stuck? Mine gets tightened up about every three days and I have to get someone else to open it for me but it is incredibly hard to do. I have bathed several times per day to try to loosen it up, but with limited luck. What tricks do you guys have?

Thanks
Lisa

[anneth121]

What do you mean clamp on the bag? The hose connection with the bag? A leg bag with the clamp on the bottom to let the pee out? A nite bag with the double clamp at the bottom? Explain.

[22cyclist]

Clamp on the leg bag. LOL! I can only imagine how that could have sounded! Love your response!

Lisa

[hunterd]

i use a "bard" brand name and the clamp just needs to be slid away from the clip itself. hope that helps lisa

[22cyclist]

It does Huntered. Thanks for that tip. I'm on the hunt for one now.

Lisa

[gresh3]

Surgery soon

I am to have the surgery on the 23rd. I have sc for about 10 or more years & could do it so easily. Then after bad
exacerbation things changed & I cannot hit it at certain times of day but mostly night. Uro said it is time. He acts like it is no big deal. Very nervous about this. My skin is so sensitive & I am very allergic too so I am worried about body accepting it.

[22cyclist]

Its no big deal really. The surgery went really well for me. I hope it will for you as well.

Lisa