More leakage.

bummer Eric. A continent ostomy should never leak. If its only while you are sleeping, do you sleep on your side? Maybe the valve is floppy or moves a bit allowing poo to flow.

I'd keep a log and let Dr Cohen know.

Hi Eric,
So Sorry sweetie,
As Dr Cohen to check if the pouch has not fallen off of the wall...it may not be the valve at all but the pouch...whenever mine slipped off the wall it pulled down on the valve and forced it open when I was squatting down of laying on my side (it would flop over)...so if he did not feel that the valve was compromised then that could be the problem...And it is fixable through laporoscopy! (I've had it done before that way...)...did you say that you are also having hip pain??? Sacroiliac? It could very well be that your pouch is down and pressing on the hip/nerve and causing the pain...Does it to me every time...
Hope that this helps
Sharon

Guess what happened this morning, AGAIN? I don't get it, I can't see Dr Cohen until he's back from the holidays on Jan 17th, and my valve is a complete mystery. I faithfully empty it every 3-4 hours, even during the night. It leaks a certain amount of stool, but thankfully, not all, when I remove the stool soaked dressing, clean myself, I intubate. Every time it leaks, I'd estimate only about 30% comes out, the rest stays in the pouch, and I have one hell of a time trying to get the catheter in, as if my valve is twisted. Once I finally do get it to go in, I empty and flush out my pouch, and it's fine, never having leaked during the day. Misty, Dr Cohens nurse, says she's never heard of this before, yeah, thanks, that makes me feel so special! Out of the thousands of patients he and his associates see, I'm the only one with this? I am thankful it's not leaking in my waking hours, but poor Freddy (my hubby) is afraid I'm going to leak all over him, and I have no warning, nor control over it. I've completely leaked on him three times with my j pouch, and now twice with my k pouch, yet he still sleeps with me, now that's love! (He says it doesn't bother him, but it most certainly does me!). Personally, I believe, as I go through this journey, that two things are happening. My once twisted valve never fully straightened out, so when I lay on my side, it flops open when the pressure builds up in my pouch. Secondly, I suspect my pouchitis has returned, creating more gas and runny stool. Most of you know, I had chronic pouchitis with my j pouch, stands to reason it would return. I'll find out more when I see the doctor, oh, and Sharon honey, I tried as you suggested, I filled my pouch with as much water as I could. I squatted, layed on my sides, back and front, jumped up and down, even stood on my head, but to no avail, I could not get my valve to leak, furthering the mystery, stay tuned every one, and thanks,

Eric

I wonder if it depends on the side or position you sleep in. Do you always wake up as soon as the leaking starts? If so, are you always on a certain side? Of course, if you sleep through some incidents and don't wake up right away you might not be able to tell which position might have caused it (if it even was the cause). It seems that it's possible that your body might become so relaxed when you're sleeping that maybe in some position it's allowing things to escape.

I wish there was someone else you could before Dr. Cohen gets back.

I'm so sorry you're continuing to go through this.

kathy

Eric sweetie,
Would it be possible to go onto strait drain for about a week...I know that this is not what you want to be doing at Christmas but it might help if your valve is starting to twist a bit (or as I suspect that your pouch might be down a bit) then go ahead and put the tube back in, tape it or use the flange like in the hospital and then you can either leave the bag attached if it doesn't bother you but if it does then plug the end of the tube and tape it safe...then unplug when you need to empty it into the bowl...at least 1 week or at least at nights...I want to see if your valve straitens itself out after a week...the fact that you are having problems intubating and finding the direction bugs me to no end...so keep safe while he is out of town and keep the tube in...if it is plugged you can go about your daily routine feeling normal and hook it up to the bag at night...
and get a couple of blue pads from the hospital to keep things clean...just chuck the pad and don't bother changing the sheets that way...
ps...how do you sleep? (no, that is not what I am asking....!)..on your right side? Your back? Do you move around at night?
Sharon

Eric, I would put the catheter in and keep it in for 21 days to scar it into place if that's even possible with your problem. It's worth a try...

Eric, if you decide to leave the tube in, I used a clamp and then a plug at the end of the catheter that I taped in for confidence, so I did not have to attach a bag. I did this for 3 months while I waited to have a procedure. It made having a tube in all the time a little easier to live with.

Hi dpol,

Whats a a clamp and then a plug at the end of the catheter?
I've got a base plate and having to leave catheter in but it's making my stoma sore as it's not got enough room to cut the right size hole around.
Thanks,
Rachel