Void Through Navel

[Ellian]

I'm new to this forum and this technology, so I apologize in advance.

I'm in my late sixties and have had ms since I was about 51. I went from RR to SP about 2 years ago. I was using a walker when my legs suddenly could't bear my weight and I lowered myself to the floor.

I can no longer stand up at all. Luckily my upper body is not affected. Recently I've had a lot of trouble transferring to my electric wheelchair in the bathroom.

Living alone, I've had to use lifeline a lot and the firemen aren't happy. My neurologist referred me to a urologist to discuss my options.

He said the suprapubic tube is too invasive for my condition. He suggested I get a smaller thinner catheter through an opening in my navel which I could handle myself.

I never heard of such a procedure and was overwhelmed. Has anyone had this procedure? I would love to hear from you and learn the pros and cons and how you feel about it. I would really appreciate any comments.

ers

[foggyrose]

Welcome to the forum, Ellian! I don't have any information to pass on to you since I've never heard of this procedure. Maybe it's a "male" thing -- which I'm not -- but wanted to wish you the best in finding a solution to your problem. Seems like I'm in your age bracket also, use a powerchair and can only stand a couple minutes for transferring. My feet will shuffle backward, not forward at all, but it's becoming more difficult every day.

Good luck and please keep us up-to-date........foggy

[Ellian]

Void with Navel

Hi foggyrose,

Glad to hear from you, being in my age group and in almost similar condition. I am a female even though my name is unusual!

I used to stand and pivot but lost all ability to stand. That makes all the differance. Now I can only transfer by boosting myself with my arms. This gets more difficult as day progresses and I tire.

[Ellian]

Hi Sparky 10,

Thanks for the tip on mitrofanoff, I'll look it up now. Do you know anyone who has had this procedure?
ers

[foggyrose]

Ellian.....I'm so sorry to have assumed the wrong gender! I just checked the website for the "M" catheter and it gives me the creeps!!!! Somehow going in through the navel freaks me out! Have looked into a supra-pubic cath, but so far can't seem to pull the trigger on that decision. My bladder situation is horrible though since I can't tell until it's too late. I hate this disease!

From what you said about having to "push up with your arms", guess that's a good reason to build up the muscles as much as possible. My ability to move at all has definitely gone downhill the past few months.....don't know whether to blame it totally on MS or age.

Take care..............

[divaonwheels]

I also can't really help with this but wanted to say welcome! A few years ago one day I just lost the total use of my legs and have never recovered any function so at the very least I know what that part is like. Luckily I was in good shape and am in my 30s so don't have a problem transferring.....yet.

[owlnona]

I'm so sorry you're having troubles. I also had problums,but I've been blessed I can self-cath. I asked for a suprapubic but my urologist said not for me. I don't see why you couldn't use your navel,I had major surgery thru my navel & that was 15yrs ago. I think for someone in a wheelchair,like I am, it would be so much easier.
Keep us posted,God Bless Nona Judy

[lemstar]

i dont know if this helps at all, but i had a colostomy in 2010, and found the boards so helpful there. it is the UOAA I think (united ostomy assoc of america), and they are a huge source of help when it comes to urostomies as well as colostomies. Go check it out--its an incredible source of info.

[kellygrn]

Other helpful site & groups

I have had MS for 50+ years. I am wheelchair/bed bound. Can not leave my house. I have had a supra pubic cath for 5 years. Since I only have use of one arm the only choice for me to remain living alone.

I have found that other illnesses have sites that helps my thought process's.

Here are some of them
Reeves Foundation www.christopherreeve.org

Patients Like Me www.patientslikeme.com

KK

[Sherri92300]

I am new to this site also... Although i am 53 .. i have had MS since i was dxed when I was 28 . I had catheters and went through horrible spasms from them and infections ... and when my exacerbations were bad when I had relapsing remitting I did not have the dexterity so I opted for a urostomy surgery . I had it done in 1994 by an unqualified urologist ... so had to have it redone in 1998 by the head of urology in boston ma . and have never had any problems with it other than taking a small dose antibiotic to keep infections at bay.

It was the best decision for me that I could make ... but you would have to talk it over with your doctors and see a urologist specialist and weigh the pros and cons of what you have to go through every day . I go everywhere with my urostomy ... vacations... camping... it makes it so I can go anywhere ... Peace to all XX