Considering an elective urostomy - need advice!

Dec 30, 2015 1:24 pm

In 2013, I had two massive surgeries to remove a cancer-filled sacrum, rectum, and carcinoid tumor. The tumor destroyed the nerve bundles that control my bladder, among other things. I have a colostomy, but not a urostomy. I am 67 and live in wet diapers 24/7. The urostomy was not done at the time because of the trauma already done to my body. I am so over wet diapers and UTIs, and am considering an elective urostomy. Any thoughts? I really will appreciate any advice.

Jan 03, 2016 8:48 pm

Dear Katburt,

I have had a urostomy for seven years after a year of incontinence. I totally understand the frustration of urine-soaked diapers. I was 67 when this happened and it is nothing short of humiliating. The urostomy was my salvation and worth going through. My feeling in your situation would be you are already adjusting to the use of a bag, and in comparison, I think you would find dealing with the urostomy a lot easier.

Good luck in whatever your decision is. My prayers are with you.

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Jan 03, 2016 8:52 pm

Thank you, Pooh Bear, for your thoughts. How do you handle the bag routine since it is a bit different than a colostomy.

Jan 05, 2016 6:32 pm

Since I haven't had to deal with the complexities of a colostomy, I think the basics would be similar to a urostomy. The biggest concern, as you've probably found out, is maintaining good skin integrity. Urine can cause serious skin issues, so everyone's routine is going to vary, and it will probably take a while to establish what works best for you. One thing I decided early on was that I could not tolerate attaching my bag to drain overnight. I found it much easier to get up and empty the small bag. I use a two-part system, which means changing the "wafer" on a regular basis, and this also is something you will determine based on how well your skin reacts. It took a while for me to settle on a routine that, for the most part, has worked well. I have to change the wafer every three days, but I have heard some people are able to go as long as 5-7 days. You probably have a schedule in place for your colostomy, so perhaps you could coordinate them so you would only have one change day.

I'm sure this is a difficult decision given what you've already been through, but I think the end result would offer you a better quality of life. You will be in my thoughts and prayers. I would like to remain in touch and know how you're doing. Sincere best wishes.

Jan 05, 2016 9:49 pm

Nurse, do you get leg pain or lower back burning sensation sometimes? I have a urostomy. My joints are fine, but they are burning.

Living with Your Ostomy | Hollister
Jan 05, 2016 10:24 pm

Dear Missymo

I do have leg pain and lower back pain, but these are both related to a long-standing problem from an injury I had long before I needed the urostomy. From a nursing point of view, I don't know why the pain you're having would be related to the urostomy. I guess there's a possibility something could have occurred during the surgery to have caused this, so I would ask your surgeon if he has any thoughts on the subject. You didn't mention how long ago you had your surgery, but if it was recently, it could be temporary just having been through a major surgery. It does have a major impact on the whole body.

I pray you can find an answer and a solution for your discomfort.

Feb 10, 2016 7:35 am

Have had urostomy bag for 5+ years but burst appendix 18 months previous to that made a right mess of tummy bowel area. Could it be trauma?