Hernia w/ a K pouch?

Hi Sydney,
Ok, first take a deep breath and let it out slowly 3xs...that relaxes the abdominal muscles that might be too clenched...then lay down on the floor or in the bath tub...hook your tube up to a bag or stick the end into a cup to catch the stuff that will shoot out with all of the gas...and once really lubed up, gently twist/roll the tube between your fingers while pushing it in (kind of like rolling a pen between your fingers)...your stoma is made up of 3 parts...the 'hole' in your pouch that it comes out of, the valve itself (a length of your small intestine that hangs patially into your pouch and come out to the skin through a canal cut into your abdomenal muscle/skin and of course the canal itself.
Your vavle can 'kink up' and develop a crook in it which makes it hard to 'find the way in'...you may feel like you are hitting a wall but not pushing the valve open, it can twist meaning you would have to rotate your tube to navigate the twist or when there is a hernia, the valve can litterally disaligne with the hole in the pouch (think crooked keyhole).
You need to try to find the 'new trajectory' of your valve...mine has to head 'upwards' instead of strait in...it used to be slanted to the left like it was heading to the middle of my abdomen...now I have to aim for my bellybutton...and over a 'hump' meaning the muscle kink.
Go very, very slowly, empty your bladder completely and then empty it again. This will release the pressure behind your pouch...take some sort of gasx or beano to try to reduce the quanity of gas in your system (it puts pressure on the valve to close tighter)...do not force it in, it will cause swelling and make things more difficult.
After 3 tries, stop. Take a few very deep breaths, change trajectory and try again. If you manage to get the tube in then tape it down and keep it in. You can plug it with the plastic tip the comes with the syringes or attach it to a bag...
If you cannot get it in then you need to become ingenious. If your tube is bending when you try to force it in then you need an old stiffer tube or... I used a slightly stiff wire, thinner than hanger wire) that I covered with boondoggle (the clear plastic tubing that kids make keychains with) and put it into my tube to make it a bit stiffer. Kind of like a guide...I then tried guiding the tube in that way (in surgical radiology they use the wire guide for an angiogram)...Sometime it helps...
If none of this helps then PM me and I will do what I can to talk you through this...if you send me a phone number I will call you back.
Hope that it works.
Sharon

Thanks so much Sharon!

I ended up going to the ER - which is a "process" in and of itself. First of all - the ER docs have no idea what a "K-pouch" is and I was not about to let them try and manipulate something they have no idea of. At my request, a GI specialist was called in. I also called the GI doc on call at Cleveland Clinic to "walk" this local GI Dr through the process. He used a tiny foley type cath to release everything. I was in the ER for about 4 hours total (no one knew what to do with me until the GI on call came in). Since then, I have gone back to Cleveland Clinic and met wit Dr. Dietz. He did a scope and could not find anything (no hernia or slipped valve). He did explain, as you did, about how the valve moves and trying to find a new way in.

Thank you Sharon for the breathing and bath suggestions - IF this happens again, I will try it!.

I told Dr. Dietz that I was hoping to travel this year (Spain, Italy, Holland) for a few months and asked if he could suggest any doctors or specialist in those countries. I was quite surprised when answered no..."There's really no other K-Pouch Specialist outside of the US." That can't be right! I am so scared to travel now. I am going to ask others if they know of any docs in a new post. However- if you have any suggestions for that, I would appreciate it!

Thank you so much!

I just replied to your other post on the subject...read post of PM me and I will do what I can to help...Sharon

If it is necessary for me to plug catheter I use a plastic wall plug.Exact fit. Whole pack so cheap and it means there is always something to hand. K pouch nearly 40 years.

Do not know what view people have on this.I believe the end of the catheter can cause a problem. If the valve has been partially pulled through by catching on the holes in the tip of the catheter. This means on next incubating it means the valve has slipped through just slightly but enough to cause a black for the catheter.

After the birth of my son with this area week it was a real problem. Freaky as the whole stoma came to the surface. A GP came out to me and taught me how to simply push this back into place. What a brill GP. Anyway on occasion I have had to do this when the valve has been hopeless. I would really like a medical opinion
on this. It seems logical that the valve end is latching on the the holes in the tip. Yes it is true that the area does move which is a headache in itself. Mind you I have had 40 years of learning its nasty little tricks played on me.Oh yes I also have a hernia.

Patricia,
I am trying to figure this out...if I understand correctly:
1. you have a peri-stomal hernia (a hernia close to the neck of the valve or stoma)
2. your valve pops out completely (which normally should lead to total incontinence)
3. when it pops out you can just push it back into place
4. your tube hooks onto your valve and 'pulls' your stoma out
Is that about right?
If I got it strait then there is a very easy fix to this...a peri-stomal hernia can be repaired through a laporoscopic procedure (no open surgery on the pouch) with a mesh repair...the surgeon cuts the mesh into a circle with a hole in the middle and slits the mesh on 1 side...then he places it around the stoma, against the abdominal wall and tacks it down...
that reinforces the whole abdominal wall under the pouch & around the stoma...tightens the whole area so that your stoma no longer can pop out.
It was my French surgeon who developed the techinique and it works just fine...it took 2 days recovery in the hospital and a week at home...if you need, I can contact him so that he can fax out the details for you.
If this is what you are suffering from PM me and I will see what I can do to help.
Sharon

Hello again
Thank you for replying.
Yes I think I did not make the message really clear.
The only time the stoma came through completely was after the birth. I understood this was due to the muscles being weak in this area. It is just that dealing with this made me realize that if all went horribly wrong with the valve I could ease it back. But remember the GP did show me this.
Now I had been told in the last few years that the hernia could be repaired. The problem came was when they could not promise that the pouch could be saved. Well I was not a happy bunny.
I declined the surgery. It seemed odd when my original surgeon had re-shaped the valve nearly 40 years ago as they had decided the valve was too long. We have to remember at this time this was very new surgery. This was done and has remained OK ish for all these years.
I think we would all fight to keep our pouches as I remember the year with the traditional iliostomy. No thank you.
It is really very interesting to read of the hernia repair you mention. Thanks