Mitrofanoff Stoma: REALLY Need Some Advice

[suzq]

Alright so I'm having some major issues with my mitrofanoff stoma, I figured this would be the best place to get some advice from others who may have gone through what I'm experiencing now. I had my mitrofanoff/bladder aug. done more than two years ago, for a couple months after I had some minor issues with leaking and infections but for the last year and a half my bladder has been behaving just the way it should.

On Saturday I went to cath and the catheter would go in maybe about an inch and then it was like completely blocked, so I started poking around with it just hoping it would work and then of course it started bleeding. I'm on coumadin for a recent pulmonary embolism/DVT so I wasn't too surprised it was bleeding a lot. I ended up getting home and my fiance had to cath me through my urethra which was an interesting experience for both of us (that little hole is hard to find!), I'm glad he was able to cath me like that though because my bladder looked like it was about to explode, you could see it all puffed up through my tummy so I was really afraid it was going to explode!

Anyways after he cathed me I tried putting the cath through my stoma and it went in no problem! Still we went to the E.R that night. The area I live in seems to have no medical professionals who know anything about spinal cord injuries by the way! Anyways the urine tests they did showed lots of white blood cells and some red also so he put me on macrobid until they get culture results back.

Could this be infection related?
Why would the conduit get blocked like that?

The day after the E.R trip I was able to cath again like normal and than yestereday morning it closed on me again, we were able to get it in again and so for now I have an i.c cath taped in there and plugged at the end, I've read that the conduit could be kinked or more likely strictured(sp)? Has anyone ever dealt with anything like this with their mitrofanoff stoma?

I'm really freaking out, my anxiety level has been sooo high lately. I had surgery on my spinal cord 5 weeks ago and afterwards developed the clots. Could my coumadin be causing this or pain killers?? I'm just trying to think of why this would be happening now when it's been going so well for so long! Sorry for the super long post but PLEASE if anyone has gone through this or might have some more insight as to what is going on I would REALLY appreciate any and all responses! Thanks! -Susie-

[WheelieMike]

Suzq,
I'm only 14 mo past my Mitrofanoff, but I've had the same problem a couple times. I hope your belly doesn't look like mine (unless you're about 6 mo pregnant), but I've found that pressing up on my stomach above the stoma helps the catheter slide in much easier. Hope this works for you.

[suzq]

I've tried pressing on it every way possible when it's been blocked. Laying down helped a couple times. From what I've read online now I really think the conduit may be closing up for some reason so I think getting a foley cath put in there would be the safest thing to do. I love my mitrofanoff when it's working right, no way I'm gonna let it just close up!

[loreo]

When I let me bladder get too full I have a really difficult time getting the catheter in. Sometimes it won't go in. When this happens, I lay down a catheterize through my urethra and then everything is fine again. I try everything else first - what works best for me is to lean forward slightly and relax my stomach and bladder as best I can. With some tricky maneuvering, I can usually get the catheter in - though sometimes it takes me half an hour or more to do it.
I think it might have something to do with bladder pressure and the valve the catheter passes through.

[SCI-Nurse]

YOu might try taking some slow deep breaths to try to relax the stoma. In through the nose and out the mouth. I would also encourage you to call the surgeon who did the procedure.

CKF

[crags]

i use mentor pvc caths due to my dexterity, but i notice soft silicones are less traumatic on the way in. i too bleed from the stoma on ocassion, usually when in a rush and a bit rough.

either way, be careful, it is possible to perforate the structures involved.

[Liz321]

Did you have an augmentation as well?

[jgrant27]

I've found that I need to use coude tip catheters to get safely (and comfortably - sometimes it really can hurt) through my stoma. If I use it more (I still use my urethra quite often) it hurts less, so I probably should switch over full-time.

I also agree w/those that have said it's hard to get it in when the bladder is really full. Usually I do a few deep breaths, and spin it a bit, and try again.

[crypticgimp]

you guys can try using a teeny bit of vaseline on ur stoma after u cath. cover it with a bandaid and see if that works for the next cath so ur catheter goes in easier. u may also want to try hydrophillic catheters and see if those work, but definitely talk to ur drs about this.
also, u need to be flushing after each cath with 60 - 100cc of saline if you have augments. in the beginning (for me it was the first 2yrs), the bowel is still producing tons of mucus so it clogs up the bottom of ur conduit. so right after cathing, just attach the syringe and agitate and pull back. keep repeating until no mucus comes out.

[suzq]

Thanks for the advice! I ended up going to the urologist yesterday and had a foley put in my stoma. I've been told numerous times by the group of urologists in my area that they just aren't specialized enough to deal with the mitrofanoff I have. I did have a bladder augmentation as well, they used part of my small bowel so yes I do have mucus but not too much, I usually stay really well hydrated and find it only gets really mucusy if I drink stuff with artificial sweetners like diet soda or if i have an infection.

I don't irrigate on a regular basis but yesterday I got a script for the syringes and saline so I can start. I can't keep this foley in though, it's a 14 and keeps getting plugged with mucus and not draining, not to mention my stoma looks worse now than it did before and I think it even had a bit of pus around it.

I called my surgeon and he is mostly retired now but his nurse gave me the name of two doctors who would be qualified enough to see. Both of which are at Northwestern hospital which is a good 3 hour drive away, one of them is on vacation for the week and I have yet to try the other one.
Do you guys think I should take the foley out and just try normal cathing again or leave the foley in for awhile longer, I'm just so afraid that conduit is going to close up or something.

[crypticgimp]

pus is a really bad thing to see. i'd get into the dr office asap! u can try this stuff called vetericyn, which is good for wounds. u can find it on ebay. wet some gauze, or even a baby wipe and just wipe ur stoma with it. that should help until u get to the dr. keep the foley in for now, but u need to irrigate it to keep it from being blocked.

[Liz321]

CAUTION, I AM NOT a MD:
Sloughing is normal with an augment. I had mine in 96 and still get mucous like threads. Irrigating will help. Irrigate with the Foley in putting a little into the syringa and sucking it out. Half in and let it retract with half the saline still in the balloon type bulb or syringe depending on your irrigation kit.

You may have to go to a 16 french but you can decide that with the dr.

Too much "digging" may cause a stricture.

What kind of cath are you currently using? Is it latex?

[suzq]

Yeah I have always had the mucus and know it is normal but the blockage I don't think had much to do with mucus, when it happened it felt like a rock was stuck in there and being on anticoagulants made it bleed probably more than normal especially since my INR is higher than it should be. Anyways I removed the foley catheter. It just kept getting clogged with mucus and having it in there made my stoma look irritated and infected. The soonest I can see a neurouroligist is more than a month away. I'm just hoping with antibiotics and frequent irrigating the blockage problem will go away. Do you guys who have a mitrofanoff stoma keep it covered at all during the day? Maybe that would cut down on infections for me. Usually I would reach for some cranberry right about now but being on the coumadin I can't.

[suzq]

oh and i just use a straight tip cath, not sure if it has latex in it... it's nothing fancy but has always worked before, the pre lubed caths gave me really frequent infections and the rubber ones don't work and are hard for me to insert with my hand function.

[SCI-Nurse]

I would also encourage you to make sure that you are drinking enough fluids to keep the mitranoff active. You might want to change your cath schedule a little to accomodate that. Covering the stoma doesn't really stop infections- the bugs are able to get through the gauze....
CKF