Living with a urostomy and MS
I’ve been having trouble functioning due to the kidney stones I am dealing with. The one I passed last month was over 19mm in size. That’s a monster. As you know I had my bladder surgically removed due to the bladder issues I was having with my suprapubic catheter (SPC). With multiple sclerosis most people do well using a SPC but I now have a stoma that helps me to empty my urine. It’s called a urostomy.
It gives me control of my makeshift bladder which is a urine pouch that I attach to my stoma at my stomach area. I empty it myself when it gets full just as you empty your bladder throughout the day when you go to the bathroom. And at night I can attach a larger night bag so I don’t disrupt my sleep needing to empty it.
Thankfully the pouch fits inside my jeans or whatever clothing I may be wearing so people don’t even know it’s there. My kidney’s are still functioning just routing my urine to an external pouch that I change about every 3-4 days.
I didn’t know my kidney’s could pass stones via my stoma like the monster I did pass. But at the moment my recent CT scam shows that I have a stone that is blocking urine from passing in my right kidney. Because of it my kidney is inflamed which isn’t good. I see my urologist on the 10th. I was hoping he could see me sooner.
But in the meantime I’m taking pain pills to help curb the pain. I’m exhausted just writing this. I also have a temperature that I recently got under control. It’s now 102° but manageable with antibiotics and Tylenol.
I’m thankful that I had my bladder removed, it has been a great help to me in dealing with wetting myself as I did before. The only problem I have now is when my pouch has a leak from where it attaches to me, which doesn’t happen often.
I don’t have to time my bladder to my life like I did daily before. I have an empty water bottle in my van if I need to unexpectedly empty my bladder which really helps. Just if you ride with me and see that it’s full, know that it’s not a Mountain Dew. (grin)
I also have a birthday coming up and hope anyone that can help me to cover the cost of my new powerchair will help. If everyone gave $20 that would help out tremendously. Thank you so much for your help.
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1. Simplify your life.
i’m so sorry to hear that you aren’t feeling well. praying the tylenol & antibiotics give you some relief. very happy you have a new powerchair. i most definitely will contribute.
hopefully it will give you more assistance than your old chair.
please take it easy and remember to hydrate.
Thank you so much!!!
hit the post button twice.
i need more coffee
I took care of your double post. I need some coffee too. I’m trying to teach my taste buds to enjoy black coffee. It’s not an easy task. haha
I can’t believe you can’t be seen until the 10th when you have a fever and pain. I’m sorry about all you’re going through. I’m praying that you can tolerate the pain until you can be seen.
Thanks… I can use your prayers! xoxo
Hello, I am researching SPC versus urostomy and came across this forum. I’ve had MS for 30 years now. My problem with my bladder is the constant infections. It’s hard for me to stand up to get onto the toilet so I got the SPC in order to let me drink my bladder while in my chair. I didn’t expect it but the SPC seems to cause more infections which as you know makes my MS worse. The SPCA was beneficial as far as allowing me to drain my bladder from high chair but these infections are out of control. They are pretty much back to back. My urologist suggested getting a urostomy but that makes me nervous. I guess because it’s getting rid of my bladder. My neurologist thinks I should do it and of course my urologist thinks I should but the surgeon who would remove my bladder thinkks we should work on getting the infections under control and other ways before doing something drastic. Any advice or suggestions are welcome and appreciated. Thank you!