Urostomy Care Tips for Full-Time Wheelchair Users

Hi folks

I was just wondering if there was anyone in the same position as me, being a full time wheelchair user.

I had a spinal cord injury a number of years ago but had to have a urostomy in 2009. I was given this as a last resort as I had so many issues with my bladder previously.

I am just looking to see how others get on if there is anyone else.

Thanks in advance

DJ1

I'm a 32 y/o with a urostomy and cerebral palsy who uses a manual wheelchair as needed. I've had my urostomy since 2005, so I've had it for just over 7.5 years now. I received my urostomy as a result of neurogenic bladder (nerve damage to my bladder, but the damage was due to unknown origin).

I have a background in nursing, so I manage my urostomy myself. I do rather well. I don't have any major issues with my urostomy related to my wheelchair use. Feel free to ask anything.

prettyteacher
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Hi Prettyteacher,

I have someone like you as a friend, and since you have a background in Nursing and manage your Urostomy yourself, I will be glad if you can share about it with me. Kindly comment on any of my pictures, and I will be able to communicate with you through there directly. Thanks,
Brian
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I, too, am wheelchair-bound. Twenty years ago, I broke my neck and tore my spinal cord (C-7, T1), leaving me an incomplete quadriplegic with neuropathic pain.

Two years ago, due to complications from lymphedema, I became a double 'AKA', or an "above the knee amputee". Then, last year, I had my colostomy done. Now, my ostomy has prolapsed.

I have had so many UTIs from self-cathing that I have hoped that my urologist would suggest something else. I have worn Foleys before, but I would end up with a bag of pink urine. The UTIs were so bad that I would hate to have to take the Foley out!

I have come to terms with everything—I'm not looking for sympathy, just any suggestions. Thanks for any feedback!

Hi! Just posted a lookout for wheelchair users with an ileal conduit (urostomy). Then, I came across this page.
I've had a urostomy since 1998. Also been very prone to parastomal hernias. Had my first hernia surgery in 2002. That one was not done with mesh, and didn't hold. Therefore, I had to have a resite to the left side with a mesh implant in 2003. Got another parastomal hernia in 2009 with more mesh implant. Then, in 2012, I had major abdominal surgery due to a small intestine obstruction from all of the mesh and scar tissue. I was told a better type of mesh was implanted during that surgery.
I also have MS, and can't stand or walk at all. Never expected to have so many parastomal hernias. The surgeon says not being able to walk and having a constant opening in the abdominal wall makes a higher risk for parastomal hernias. Another friend in a wheelchair (SCI) has had a continent urostomy for the same number of years, but she's never had a parastomal hernia. I wonder if I should have had a continent urostomy. Thanks for sharing any info.
jb

PS: Is there a chat room for wheelchair ostomates?

Staying Hydrated with an Ostomy with LeeAnne Hayden | Hollister

My profound respect for you who are wheelchair-bound.

And to your attitudes about the fact.

An old adage we should all remember:

"I used to complain about my shoes being too tight...

until I met a man with no feet."

God bless you all
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Jack

Hi jbtalks2

Fortunately, I have not suffered a parastomal hernia yet, well not that I know of, but I am having trouble with my abdomen now. I have a check-up at my spinal injury center soon, so I am going to speak to them about this when there.

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Having a spinal injury, I can go to the spinal injury unit where I can see specialist nurses, some of whom deal with continence issues, so for me, things are pretty much sorted.

I was having real trouble getting bags to seal around my stoma, but I have now managed to find a bag that gives me some confidence.

The biggest problem for me is about people seeing my bag. I hate this feeling, and although people say they can't see it, this doesn't fill me with confidence. People look at wheelchair users at the best of times, so I just feel that they look even more when I have a urostomy.

One thing I hate doing is flying as I can't get to the toilet. I travel alone, so I am always conscious about what I have to drink beforehand, and I worry if my bag is going to come off during the flight.

I hope I don't come over as moaning as I do have a great deal in my favor.

Regards

DJ1