There are general surgical concerns, the risks of any operation, especially when you involve bowel, and it’s just weighing the risks of the operation versus the benefits. It’s not a perfect operation – you can leak from the stoma which then has to be revised, but the success rates are very, very high, and satisfaction is extremely high. It lends independence and really makes a big lifestyle change. Compliance is better. Especially in boys, who have a long urethra, you don’t get urethral injury from chronic catheterization. It’s probably cleaner, easier to clean, especially for those that have challenges with fine motor skills and coordination.

Now again, some patients do great without it. I met a child who’s eighteen with no issues at all. He actually has good sensation, and I said, “How do you catheterize?” “No problem, piece of cake.” I said, “Did anyone ever talk to you about surgery?” and he said, “Yeah, but you know, I do great with this thing, I don’t need it.” Done deal, lucky patient!

Carlos Estrada, MD, Myelodysplasia Program, Department of Urology

 

One of the reasons that the abdominal stoma can be such a major benefit is that this is something that quite often even a young child can develop a skill for and do him or herself. For me that’s one of the major benefits, other than the obvious benefits of emptying the bladder routinely. The child is participating in their care: they’re helping to take care of themselves, and it’s not always someone else doing something to them.

There are risks of this surgery as there are with any other surgery. This is considered a major surgery in that it involves an abdominal incision and typically use of the appendix; it’s more complicated if we don’t have healthy and appropriate appendix available, because then we have to use small intestine. So there are significant risks and potential complications any time we do that type of surgery. After the surgery is successfully performed, there are possible complications that may arise over the next several years: difficulty catheterizing, incontinence from the abdominal stoma, when at the outset it’s meant to be continent…there are potential risks, complications, and drawbacks from it but the tip of the balance in most cases is heavily toward the benefits.

Joseph Borer, MD, Department of Urology

 

Their biggest surprise afterwards is that it usually doesn’t hurt when they catheterize themselves. Either it’s been uncomfortable for them to cath, or they’re afraid to cath, so the first time they actually catheterize themselves through the stoma is usually a very big deal. The first time they’re very tense, and very unsure about how this is going to work. Once they cath for the first time it’s like, “Oh gee! This is great! Now I can empty.” So they’re usually pretty satisfied afterwards. It’s also a lot more convenient for them out in public and in schools. Pretty much everybody has been very satisfied after.

Diane Manning, RN, Department of Urology