Hi Kara

I am so sorry...it is still going on, huh?

You just said something very interesting...that when your bladder fills you leak more...which leads me to think that you may have a 'positional leak' meaning that your pouch is hanging funny (which could be very good news...it might also mean that your valve is just fine)...has your surgeon ordered a standing/sitting/laying on your side contrast study. Filling the pouch with contrast and taking pictures of you in all positions will make it easier to see if it is just slightly off or fallen and sitting on your bladder (which might be pushing it up and popping open your valve?)...many different possibilites and so much easier to fix if it is just the pouch down and not a valve re-do.

As for what to use to cover a leaky stoma...you can try cutting up a normal diaper or those for 'women'  into small pieces and tape them over it...it has the advantage of having a water proof backing on it so that nothing will leak through.

They have some very thin ones now so that there is no bulk...

I use a cut up minipad...but a maxi one can work too.

Let me know if there is anything that I can do to help.

Sharon

Kara

 I too am so sorry that you continue to have leakage problems. Sharon's idea sounds  logical and I hope you can pursue it.  Perhaps your doctor  can discuss it with Dr. Dietz and you won't have to travel to Cleveland again. I can't think of anything other than the food issue. Are you keeping a journal of input and output in order to determine the culprits? I know it's difficult to do, but when I have it's been helpful.

I too have extensive mucus output  and had been concerned that it was symptomatic of a problem. Last week I saw Dr. Kirin, in NYC,  who scoped me and said that the valve was fine.  I'm  just a mucus type of person, I guess.  there's a small hernia, which I'm not supposed to worry about.   Anyway, I fold a half paper towel – – Actually two of them, of which I trash one after a couple hours– – and put it on my stoma. I also put  the parts of two sanitary pads on the inside of my underpants.   Would like a solution that doesn't add 2 inches to my belly. OK I've exaggerated.

Besides calling the stoma nurses at Cleveland I would also call Dr. Dietz. He should be made aware of this problem  and should be working on the solution for you. keep us posted please. I hope your  situation gets better.  Janet

Kara,

Dr Cohen, my k pouch surgeon and one of the original ones, gave me some tests to do when I started to leak.

First was the bubble test. Fill a tub with water, lay in it. Check the stoma for air bubbles. If air or stuff leaks out, you have a leak.  (I added twisting and turning from side to side to see if various positions made it better or worse)

Second was to squat right down on your haunches..as low as possible (preferably with a full pouch and bladder or just inject the pouch with water (coloured dye?)...that is where my leaks were..when squatting...that told him that my pouch was down and that the bladder was pushing up on it when one or the other or both were full...popped my valve open almost every time.

Third. Yoga positions. 

Try them all...fill the pouch and bladder first and see if there are specific positions that pop the valve open...write down the results (sometimes you will only get air coming out and sometimes stuff, that tells you something too)

The final things is the "poking business"...it means that you are not getting 'in' or 'through' automatically...Which means that the valve is being pulled or twisted...which is also a possible indication of   a pouch twist or that it has fallen. 

Be very careful with the poking...you can cause yourself injury...when Dr B went in 17 months ago to put my pouch back up, he found a 'white spot' on my pouch where I kept hitting it looking for the right track to get through...he said that if I had continued hitting it I could have caused necrosis or some other problem.

Try the tests and let me know.

Sharon

Thanks ladies for your insight! I thank you most for more ideas to cover my stoma than having to pay top dollar for something I can make at home. Janet, it was interesting that you were scoped because of your concern with excess mucous (glad all is okay even with hernia). I guess I am in the same boat as you regarding mucous output and will try cut up sanitary pads. I need to keep the mucous away from my skin or it starts getting irritated. I do not have a GI here in Chicago area because I don’t want to waste money, tests, time away from work for someone guessing at my problem when Dr. Dietz would be the one to know. So I knew going into this surgery, if there were any issues, I would be going back to Cleveland for help. Sharon, I am concerned also with the poking and not being able to insert the catheter smoothly. Ever since I started leaking, it has been a 50/50 chance if I get the catheter in my pouch; it is troublesome and can be very painful. Dr. Dietz seemed to think it was because I didn’t know where my valve was – but that truly is not it, I have had no problem until I started leaking. So after I leak or times when I am full and really need to empty, I have serious trouble inserting the catheter. I have no problem otherwise so Sharon your mention of position could very well be the issue. I will speak to the nurses and if no other suggestions, make another appointment with Dr. Dietz. Just reading your suggestions helps so thanks again for everything. I will keep you posted.  

Kara, 

If you pouch is twisted it will twist the valve and change the direction...then you may need to look for the right direction in...When my pouch was twisted up into the hernia, I had to aim up and towards my bellybutton to find the entrance.

Now I have a mobile valve...it sort of isn't anchored inside the pouch anymore...so it moves around...as long as my pouch isn't overfull (and my bladder too) I can easily get the tube in but if both are full it feels like the valve is being flattened against the wall inside (or folded...a feeling, not a fact) so I have problems.

One solution is to intubate a little more often...and not allow it to overfill.

Another is to intubate slowly...allow the tube to sort of guide itself in.

What kind of tube are you using? You may prefer a silicon one that is softer and thus more managible..

Keeping a guide wire in....again when the pouch was twisted I place a thin guidewire in (I covered it with plastic boondoggle to keep the wire from slicing my stoma like butter!)...by the way, that wire conducts a bit a a leakage out (a few drops). I managed to keep it in for a couple of months and it gave me the secuirty to continue to go to work...and not worry about not being able to intubate.

Sharon

Hi,

Had an awesome K Pouch or many years..was originally constructed by Dr Fazio,  at  CCF, and had a revision or two with Dr Bauer in NYC...due to injured valve, required surgery that did not go so well, ended up with really bad abdominal / gi probs a few months later, went to closest major med center ( may have been big mistake ), where the opened me up, found several issues with the k pouch and surgeon felt is was not usable, so pouch excision..now on TPN...loop/end ileo...hoping that when I fully recover may have chance for entirely new k pouch..risky endeavour, but loved the k pouch so much, and the fact it allowed me to live with a much higher quality of life, may try for a new one in future...

In any event, in my experience, one of the best and most cost effective ways to cover the k pouch stoma is using what are known as nursing pads...

http://www.target.com/p/lansin...LRw&gclsrc=aw.ds

http://www.walmart.com/ip/Lans...ount-2-Pack/19598798

Just place over k pouch stoma, usually can be held in place by waist band of undergarments or clothing...they work great, absorb the fluid/mucous, and are relatively inexpensive...very easy on the skin, no adhesives..may use just a bit of paper tape to hold in place...but overall, they work great..one side is soft , absorbent, other is sort of a  vinyl/plastic, with keeps fluid from leaking through...

As for intubation, use lot of lubricant, try to maybe use marlen bullet head catheter..Be very careful and take time when intubating.....I AM NOT A PHYSICIAN...just offering info on what worked for me and others with k pouch..check with et nurse or surgeon before using to get all  OK....

But, they do work great ...also, Sharon's suggestions will also work perfect...

For various reasons, the k pouch valve can 'slip' or come undone...it can be fixed...in my case, was revised  with great success in the past,  but sometimes things don;t go as planned...as I have discovered over the past year...if revision needed, go to best k pouch surgeon you can get...odds are that revision will have a good result.    Sincerely, R.

R

Thanks so much Rand- your input helps tremendously! 

randers

how did you valve get injured?  is injured mean the same thing as slipped valve?

i've just seen dr. kiran at columbia for my routine maintenance and am very pleased with him.  j

I used to buy Tegaderm to contain mucus but that was getting way too expensive. So I went to Walmart and found this Mirasorb gauze sponges made by Johnson & Johnson. This along with Nexcare waterproof first aid tape I found more palatable than spending $30 per box on Tegaderm. The sponges are huge that you could cut them into 4 smaller pieces. One small piece can last me 4-6hrs till it's fully saturated. I like the Nexcare first aid tape because it's flexible, hasn't peeled off once, and doesn't tear my skin off...But I should add that I do use Allkare skin barrier wipes before applying them. This tape you could buy cheaper in bulk in Amazon.

JLH Dr. K is my surgeon also. It's a godsend one of the top KP surgeons transferred over here, otherwise me getting a KP would have been wishful thinking as the only other KP surgeon in my area (Bauer) is cash only. 

Thanks so much - I met with Dr. Kiran before he left Clinic. I really liked him so it's good to hear how happy patients are with him.