Mitrofonoff question

[LeeAnn]

I am posting on behalf of someone who has come to me seeking answers, which I don't have. Here is what they are needing input on:

They have a family member, who is a young boy. This boy has a mitrofonoff , currently just below his belly button, that is not functioning properly anymore. They are wanting to take it and move it to his perineal area, just behind his scrotum. The questions they are asking are
1. Can he sit and ride a bike?
2. Will he sit and go to the bathroom or cath himself
3. Will this be a painful site for this?
4. Has anyone ever heard of it being placed here or had it done here?
5. Is Continence an issue with this?

This youngster is looking forward to being able to take his shirt off and do the things as other kids do and not have the site so noticeable, so it is something (from what I can gather) that he is wanting. But , there are fears that other things are going to become an issue.

If anyone can offer any insight to this, it would be greatly appreciated.

LeeAnn

[Melanie]

I have a mitrofanoff, Mine is on my right side, a bit below my belly button...

To answer the questions for ME, and MY view on mine.

1. Can he sit and ride a bike? If i had balance, yes.. I can sit on a bike, just not balance!
2. Will he sit and go to the bathroom or cath himself? I can sit or stand to cath..
3. Will this be a painful site for this? For mine, i don't have pain.. sometimes when I sneeze, it does tighten.. but that's really rare. The only time I ever feel the catheter ion me , is if I have an infection. which for me, I'm "supposed" to get them..
4. Has anyone ever heard of it being placed here or had it done here? Where his will be placed? no.. then again, maybe since I don't really know the male anatomy...
5. Is Continence an issue with this? No, the only time I ever leak, is if I wait to long to cath...


I can wear a camisole, and people don't see my Mitrofanoff. All they would see is the top of my colostomy bag. I can, when I cath just place the catheter in my stoma. I technically do not need to pull my pants down to reach the stoma.

I really hopes this helps at least a little bit.. GOOD LUCK!!!

[squid56]

I have an internal pouch and my stoma is located on my right side just above my pubic hair.
To answer those questions- if it is located where my is, then yes he can ride a bike.
He can sit or stand to cath.
Where mine is placed is a great site for me. I had an ET mark the site before my surgery. She decided where the best would be. In fact she marked off 2 possible sites and my surgeon chose one of them. I have never heard of it ebing placed behind the scrotum. Who suggested this?
I have no pain where it is, unless I have an infection.
As for continence, I always need to wear a covering as I do leak out mucus and again if I have an infection I am likely to leak urine or if I wait too long to cath. I also have IBS in my pouch so at times it leak due to this.
I would see if the surgeon has any one of his patients that has thiers placed in that area to talk to.

[LeeAnn]

They are wanting to move it to just behind his scrotal sac. ........... This is where the concern of sitting and riding bikes , etc comes from. He currently has one just below his belly button, but it is causing problems and is in need of being moved.
From what I am told, they will make the ureters come from the bottom of the bladder and out through the perineal area, just behind the scrotal sac.

Thank you for your input, this is something that , not having one, is difficult to assist this person/family with the answers.

LeeAnn

[squid56]

LeeAnn,
I would think that it might be difficult to cath there, especially if he can not see what he is doing. If it is truly kind of buried up in there, then I would assume he should still be able to ride a bike, sit, etc. So, is it the doctors who suggested this site or the parents? If it is the docs, then they really need to talk to others who have it placed there.

[sheri, Cameron's mom]

Our son does not have a Mitrofanoff, but I know quite a few children who do. I have never heard of it being placed near the scrotum. I think the parents are very wise to question this and should do what they need to get a 2nd opinion. Even if it means going through children's hospital websites to find pediatric urologist's email addresses and just asking if they've ever heard of this approach before.

Sheri - mom to Cameron 6 w/HIA etc...ACE Malone

[superauntie]

Our son does not have a Mitrofanoff, but I know quite a few children who do. I have never heard of it being placed near the scrotum. I think the parents are very wise to question this and should do what they need to get a 2nd opinion. Even if it means going through children's hospital websites to find pediatric urologist's email addresses and just asking if they've ever heard of this approach before.

Sheri - mom to Cameron 6 w/HIA etc...ACE Malone

I agree, I have never heard of a mitrofanoff stoma being put near the scrotum or anywhere near the genital region. I have only seen them placed on the abdominal area (in the belly button or the right/left side of the abdomen). They should seriously get a 2nd. opinion. Besides, why have the mitrofanoff stoma near the scrotum, especially since the penis is right there and you can cath through that easier and there wouldn't be an open sore there all the time. I'd think you'd get more UTI's if it were placed near the scrotum.
My mitrofanoff stoma is in my belly button, but will most likely need to be repositioned to the left side of my abdomen, due to it leaking constantly.

Jessie
(ileostomy since 1/08 and mitrofanoff since 5/06)

[mitrofmomma]

Hi all. Thanks for your time and responses. This message was posted about my son when I did not have access to this site. He has a mitrofanoff, but it needs to be revised, since it leaks when his bladder gets to about half capacity. His doctors (who are from a children's hospital) posed the option for us to move his stoma to a location just behind the scrotum. This place was chosen because he was borh with 2 functioning urethras, one of which opened out to the surface of the skin in this approximate area. Due to many surgeries, his penile urethra is very scarred and has many strictures. These obstacles make it virtually impossible to pass a catheter. We have the option to re-create his abdominal stoma, but he is very self conscious of it... he would love to run around with no shirt on like his friends especially while swimming. When he was young we had his peno-scrotal urethra closed and now that the mitrofanoff is breaking down, his urologists would like to re-open this original/natural urethra only since he has had procedures on he peno-scrotal opening, they want to go back just a little further where there is fresh, untouched urethra to work with. As I study more, I find that this is a common surgery for older men who do not have a need to make babies or stand to pee. (the semen would also be diverted to this opening behing scrotum) Since my son has had many surgeries and is on immunosupressive drugs for a kidney transplant, it is likely that he will need to use invitro to impregnate anyone, so that makes his a candidate, just as any older fellow who does not need to worry about functioning for family planning.


Thanks,
Kelly

[Lew Taylor]

Hi I'm Lewis Taylor I'm thirteen I have a mitrifonoff and it's just below my belly button it hasn't caused me much probolems since I had the operation in 2009 I can ride a bike normally and regularly play sports (cricket,football) the only sport I cannot play is rugby but fine with that.
People that have seen me at the swimming baths or on holiday don't take notice to the tiny hole and if they do then I tell them it's a birth mark or if they are close friends I tell them the truth and they don't seem to care so good luck with yours:)