mitrofanoff question

[jessie.gray]

I had a mitrofanoff surgery on May 30th., and was doing pretty good with it until recently, when I got an infection. I started to leak constantly out of the stoma, my urine smelt terrible, and my stoma started to feel sore everytime I cathed.

My doctor told me to irrigate my bladder to try to keep the mucous level down to prevent future infections. Is this really necessary if you had your appendix used for the procedure? I've never heard of anyone needing to irrigate if they have the appendix used.
Also, is it normal to have to switch catheter sizes after you have the mitrofanoff? I was using a 14 FR closed system catheter when I was cathing through my urethra. Now, I have to use a 12 FR catheter because a 14 FR one won't fit into my belly button. I also haven't heard of having to switch catheter sizes.

Anyone who has had a mitrofanoff done, I'd really like to hear from you. This is all new to me. Thanks!!

Jessie:)

[LBUSH49]

Hi Jessie , My name is Larry I had that same Operation last Aug. and had all kinds of problems with leaking they tried 4 different medications ,Botox injectections , a Bladder stimulator trial for 14 days and had to remove it ,I had U.T.I.'s every other week , then May 26th they did a ILEAL CONDUIT operation that operation was 8 hours long now my bladder does do anything they bypassed it so now I have a new Stoma that goes right to my KIDNEY and I have a 2 peice bag system made by ConvaTec that covers my STOMA and I have to change it every 3 days and when it gets full I drain it very few leaks so far unless I go 4 days without changinging it ,I was in the hospital june 18-20 with a really bad U.T.I. and they tried to go 4 days and I told them it would leak and sure enough it did. But one advantage is no more cathing , I donated them to my local hospital because they use to give me different supplies to try. Well I want to wish you good luck and made god watch over you ,LBUSH

[jessie.gray]

Thanks for writing back!
I still leak through the stoma if I don't cath every 3 hours, but its not enough to even make a diaper all that wet. Since I can stand up on forearm crutches to cath (I use forearm crutches in the apartment and a wheelchair when I'm out), I've been emptying this way to get all the urine out of me, as well as coughing a lot while I'm cathing.
Last night I woke up to my back feeling really wet and realized that a diaper had soaked all the way through and I was also leaking through the belly button stoma. It took me a good half hour to change the bedding and also get my daughters back to sleep (they co-sleep with me).

So far, the irrigating has been going well. I don't have any big accidents during the day now, just at night when I'm asleep. Most likely, I'll have to set my alarm to get me up at 3am to cath.

I've never heard of the procedure you had. Is it the same as a urostomy?

Jessie

[LBUSH49]

the way the DR. explained it was a Bladder bypass with a ILEAL CONDUIT ,yhe bag is on my stoma ,my old stoma was in my belly button ,this one is about2 inches away from my belly button ,all this was caused by having 7 back operations that killed the nerves to my Bladder giving me a neurogenic Bladder

[SCI-Nurse]

The need to irrigate is quite common & necessary.

CWO

[wheel_e1961]

The need to irrigate is quite common & necessary.

CWO

What procedure is recommended to irragate?

Mitro Oct 10th. MACE SAME TIME. not happy. Leaking mitro.

[ima2003]

i had a bladder augmentation and stoma using large bowel instead of appendix on oct 13. i have to say i feel great. i can go 3-4 hrs between caths. my bladder will hold 350-375 cc of urine. i do not leak through my stoma...but i will leak from my urethra if i don't cath in time. i set an alarm to cath once during the night. i stop drinking fluids at 6:30-7:00. the good news is i have some sensation in my bladder...lets me know when to cath. jessie, did you have augmentation as well? how much urine will your bladder hold?

[jessie.gray]

No, I haven't had a bladder augmentation. My urologist seriously doesn't recommend that I get one, due to the fact that he'd have to small intestine or part of my stomach to fashion the extra piece on my bladder, and is worried about that causing small bowel syndrome and worsening gastroparesis (I don't have a large intestine, rectum or anus anymore). We decided to do Botox bladder injections as well as putting me on Toviaz and that has helped a whole lot with bladder accidents. I go for my next set of injections in Feburary.

As fasr as irrigation, I do this once a day, usually at night before bedtime. I use a catheter-tip syringe (BD makes these), hook it to the end of my catheter and fill it with 2oz of bottled water (I used to use sterile saline but don't anymore), and let it drain into my bladder. After a couple seconds, I withdraw the liquid. This has cut back on bladder inections well.

Jessie
(hereditary spastic paraparesis and L-4 SCI)

[summergirl89]

Hey Jesse! i cath through my belly button and my appendix was used as well. i was able to stay with the 14 fr. i also had an augmentation. this was all about 15 years ago and recently the catheter wouldnt go in so i forced it and blood was everywhere. i went to dr. and he put in a 12fr. and had me leave it in for 5 days with a plug at the end to take out when i needed to cath. he also suggested i flush it which id never done. wed. i took out the tube and everything was fine but i still flush every so often now. i think the mucus may have hardened a little in the canal and bu forcing the tube in i punctured something. anyway, flushing will keep the mucus from settling. my augmention was the best. before i could only hold about 100 cc's and now i can hold 600-800 cc's.
good luck!
Amie

[pash8605]

I irrigate daily with 60cc's of homemade saline (1 cup of water boiled with 1/2 tsp salt) and have barely had any infections. If I start to get a lot of mucus, I just down a bunch of water and it clears up.

It doesn't seem strange to have to switch cath sizes. Different hole, diferent size right? I used to use 12fr before the mitro and now use either 12fr or 14fr for the belly button.

[Flynn]

What is the best way to learn about mitrofanoff surgery? I am sick of constant UTI's but concerned there is no guarantee the mitrofanoff surgery will result in an improvement. Also, I don't have finger function. Would I be able to cath? Any thoughts would be appreciated.

[SCI-Nurse]

Flynn, there are tons of posts on this forum about Mitrofanoffs. Use that search term in our search function in the Care forum and you will find hours of reading.

A Mitrofanoff will not necessarily decrease your risks for UTIs. This is much more a factor of your bladder pressures, over-filling between catheterizations or waiting too long between catheterizations. Most people can do their own intermittent cath with tenodesis through a Mitrofanoff, and some even without tenodesis (often using a tenodesis splint).

As far as finding a urologist who is experienced with these, a referral from a major SCI rehab center or from a pediatric hospital may be most helpful. More Mitrofanoffs are done in kids (often with spina bifida) than in any other group.

(KLD)

[jessie.gray]

One big thing me and my urologist found after I had the mitrofanoff surgery done was that my kidney reflux was dramatically reduced. I don't know if this has happened to anyone else or not, but I'm just glad I am not getting kidney infections all the time.

I had my surgery done by an adult urologist, but was later refered to a pediatric urologist for ongoing care of the mitrofanoff stuff and my neurogenic bladder, because he was more experience in that stuff than my former doctor.

Jessie
(hereditary spastic paraparesis and L-4 SCI)