tag:blogger.com,1999:blog-3287942833314297300.post2041390974881734467..comments2024-03-21T12:57:45.093-05:00Comments on The Squeaky Wheelchair: I Can Pee Out Of My Belly (Or, My Mitrofanoff Surgery)!The Squeaky Wheelchairhttp://www.blogger.com/profile/06173011955812450261noreply@blogger.comBlogger4125tag:blogger.com,1999:blog-3287942833314297300.post-78870759783803725412019-05-31T16:55:26.558-05:002019-05-31T16:55:26.558-05:00This was funny and well-written. I have shunt com...This was funny and well-written. I have shunt compensated hydrocephalus and when my shunt failed a few years back my brain stopped telling me when I needed to pee and the bladder comedy ensued. I enjoyed reading this and subscribed to your blog.Tena Maehttps://www.blogger.com/profile/17583766676761888869noreply@blogger.comtag:blogger.com,1999:blog-3287942833314297300.post-88490308821871315942019-04-18T19:29:04.242-05:002019-04-18T19:29:04.242-05:00I am amazed at what medicine can do. It gives me ...I am amazed at what medicine can do. It gives me hope for my own disabilities that I can adapt to the world, too. Thank you for this informative post!Stephaniehttps://www.blogger.com/profile/12540927559726674184noreply@blogger.comtag:blogger.com,1999:blog-3287942833314297300.post-20847387017268830732019-03-16T11:15:19.042-05:002019-03-16T11:15:19.042-05:00Hi! Thanks so much. Infection is a risk with any s...Hi! Thanks so much. Infection is a risk with any surgery obviously but I haven’t had any infection in the stoma. One UTI from the indwelling cath at hospital but none since then.<br /><br />I actually think the mitro has helped me have a healthier tract with less UTI risk because I’m actually drinking and peeing regularly!<br /><br />I use a closed system cath which has the baggy attached so I don’t have to hold a urinal. The CS also reduces the entry of outside germs. Mine has a little handle so my hands do not even touch the tube. Hand washing is really important though!<br /><br />Insurance coverage is definitely an ongoing concern. Right now no issues especially since I have a dx of neurogenic bladder but that’s definitely something to discuss with a doctor.<br /><br />If you do not access a stoma regularly it will narrow and close (bodies try to heal themselves!) so it’s important to cath on a regular basis. I can still void urethrally but channel health is even more crucial if you can’t.<br /><br />My bladder produces some mucus too so I need to wash out my bladder daily with sterile water (not everyone does, and the frequency may change with further recovery). I need a PA for that so my mom usually does it in the AM.<br /><br />The other option is a suprapubic tube which is an indwelling tube at the belly either connected to a bag or emptied like a tap. <br /><br /><br />We can talk more if you have any more questions. Just text me!<br /><br />Love you CJThe Squeaky Wheelchairhttps://www.blogger.com/profile/10258307435726974408noreply@blogger.comtag:blogger.com,1999:blog-3287942833314297300.post-87433271469100794872019-03-15T18:17:47.006-05:002019-03-15T18:17:47.006-05:00I've thought about doing this for years. Becau...I've thought about doing this for years. Because I can stand and walk a little no one has ever taken me seriously about it. I'm about to be 38 now and have been playing the dehydration game for far too long. Still parts of this freak me the hell out. Like what about infected stomas and UTI's. Is there an increased risk? What if my insurance stops covering cath supplies and then I still have to pee the normal way but now have a stoma. I applaud you. As usual you are who I want to be when I grow up. CJhttps://www.blogger.com/profile/01065078361139719088noreply@blogger.com