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Hi everyone, I'm considering urostomy and colostomy surgery as an alternative to staying with diapers. I'm 18 and a C5/6 quadriplegic due to spina bifida. I have neurogenic bladder and bowel with no control of either. My bladder dribbles frequently. My diaper can hold about four hours worth of urine. My bowels go anywhere from diarrhea to constipation needing a cone enema. Because of my lack of mobility and dexterity, I am not able to change my diaper independently and it's a time consuming process for my care providers since I use a wheelchair. I wouldn't be able to change or empty ostomy bags myself because I don't have the manual dexterity, but it seems like it would be faster and easier for someone helping me. Also as I go to college, it seems like it would be healthier for me to wear a colostomy bag rather than sit in my waste because I can't miss class time for a change. Any advice? Thanks, Mallory

Mallory,

You are one of the bravest of our members. You have my unalloyed admiration. I do not feel qualified to advise you; however, there are folks who can. My guess is that a physiatrist or an occupational therapist could give you the best advice current medical expertise makes available. Good luck and keep us informed. Although I have been urinary incontinent for decades, bowel control difficulties are more recent, so I'm just learning. I welcome your wisdom, as I'm sure do others here.

Mallory,

I understand your situation. I've considered doing the same, but I have more mobility, and as long as I'm able to care for myself WITHOUT continues skin infections then I will continue to use diapers. Given your situation I concur it would be a good decision to go forward with the surgeries you described. The ONLY concern I would have would be the possible UTI that many accompany the cathing. Those concerns aside, I think it makes total sense to have the surgeries as I would do the same if I was in your position, and not able to care for myself any longer.

Hope this helps.

Mallory,

I am not a doctor, so don't take this as medical advice. Before making this decision, i would consult the surgeons on both those procedures to know the exact risks involved which im sure youve already done or are planning to do. Perhaps there is a solution less radical than a colostomy bag that would hep. In my work with the special needs community, i have been made aware of a procedure called MACE, which is useful for those with neurogenic bowel. What it is is a stoma type deal sugically attatched to the colon that flushes out the the colon so that it is empty, which should make it so that accidents are less likely to occur://www.medscape.com/viewarticle/410216. As far as the urine side of things, it would appear there are several different ostomy procedures to consider: http://coloradourologists.com/documents/Urostomy.pdf

I hope this information helps. Again I would advise seeing a range of professionals, perhaps an OT and pysiatrist as Patrick suggested, and get opinons. This is potentially a life altering decision. One thing I might advise, and you are free to accept or reject this would say though is don't base your decisions soley on what is most convinent for your caregivers. If they are being paid, then it is their job to help you. If you do these procedures, it should be done because you think it would give you a better quality of life. If the risks are too great, then you need to decide against them, wheter or not it makes their job more inconvinent. Of course, you are your own person , and all the decisions are up to you. I would point out that one possible complicaiton of ether the urostomy or the colostomy option would possibly interfere with transfers, if they do the one-person pivot transfer. Maybe it would, I don;t know.

But i hope this post helps somewhat.

Peace out!

Rob

_________________
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Thanks. What I meant was that I still wouldn't be able to do any of this independently. Somebody's going to have to assist me with it. If it's faster for someone to cath me or empty a bag than it is to change a diaper, that does give me a better quality of life because it reduces the amount of time it takes to deal with it.

Keep us informed on how this works out. I'm semi quadriplegic. I had so many UTIs from cathing over the years We don't do it at all anymore. And after I begain having trouble swallowing. I need a stomach feeding G tube. For medications etc. Unfortunately that's ruined any hope for maintaining a bowel program. So I'd be interested in anything to get Me out of diapers again. I'm sure My husband and caregivers would too.

An online friend of mine who has CP switched from diapers to urostomy and colostomy and found this was great for his independence, although he has had some complications in later years. Have you ever looked in to/been recommended a mitrofanoff? You or a care giver would catheteriss through a stoma so can be done sat in wheelchair. This is frequently through the belly button. It closes off the bladder usually so no leaking like you might get with a suprapubic. They can also increase the size of the bladder at the same time so that it will hold more and last longer. I guess you probably don't have much bladder capacity though? In which case I can see why they would recommend urostomy .

Something to look into is the Inter stim to control both.