Hello,

my name is Martin. I am living in Germany.

I got a Kock-Pouch in July 2009. Unfortunately there are not many people in Germany, who have also a Kock-Pouch and apparently most of them which have one are not writing about it in the internet. Therefore I have decided to write my questions in this forum.

Before the surgery I forgot to ask the surgeon where the opening of my kock-Pouch will be located. Fact ist now that the opening is located just above the pubic hair line. This is bad for me, because the mestopore pad is so big that it covers approximately the half of my pubic hair area.

Is it normal that the opening of the pouch ist located so low? Do you think that it is possible to relocate the opening of the pouch?

The next thing ist that while I am standing my belly is not flat like it was before the surgery. My belly is now hilly on the right side were the opening of the pouch is located. About ten centimetres higher there is the scar, where the opening of my illeostomy was located. Above the scar is a small hill and under it there is a big hill. The big hill is pumping up and down extremly while I am coughing. Of course this looks terrible. Do you think there are any options to correct this?

In addition the valve is leaking very much, so that I have to wear a ostomy bag. But now I have to place the wafer in my pubic hair area.

I am now very depressed. I don´t want to go to the surgeon again, who have done the surgery last year because I am absolutely unsatisfied with his work.

Perhaps I have to live with a hilly belly till the end of my life.

I would be grateful for any suggestions.

Kind Regards
Martin

Hi Martin,
I live in Paris and there are not many good surgeons who know about the K pouch here either...I do have one doctor who has helped me with other problems around the pouch but who does not touch the vlave or the pouch....
The hilly parts are semi-normal..I've got tons of them around the 8 abdominal scars..They ca,n be reduced/fixed with plastic surgery...as for the low stoma, mine is too and for the first while I just waxed the pubic hair off of the area to prevent all of the rashing and bacterial infections, cleaner too...made the pads stick better and the less prone to irritation..don't shave tough...bad idea.
You can do the waxing at home yourself with a kit.
As for the leaking??? That is not normal! You should not be leaking from your valve...you need it scoped to find out why...It sounds like your bulge may very well be a hernia in which case that would explain both the bulge and the leaking...get that checked out first and also if you have an untrasound you can see if the pouch has fallen off of the wall....it also could explain both the bulge and the leakage..or a combination of both...I have someone really good here who can help with both problems..
but do the tests at home first...you are covered for surgery in France via the European union...
Let me know if you can get the tests done and then I will put you in touch with my surgeon here.
Sharon

Hello Sharon,

thank you very much for the information.

Four years ago the hospital, where I has been, published a press realease. In it was mentioned that the kock pouch improves the intimate life of the patients, which have had an ileostomy before.

Im my opinion there is no improvement of the intimate life, if the belly gets hilly doe to surgery and the patient have to remove his pubic hair wether he wants this or not. It just looks absurd (laughable) when the half of my pubic area is covered by the mestopore pad and above there is the hairy belly. If a woman sees this, she would think, that I have a very bad injury or something else. Of course it renews more questions than a small ostomy bag on my belly.

I don´t know what a surgeon is thinking when he places the opening of a kock pouch just three or four centimetres above the cock of a man. It would be amazing for me if many male kock pouchers have theirs opening in such a deep location. In the internet I found a picture, where I saw that the opening is normally higher located on the belly.

Because of the leakage of my pouch I am strongly interested in joining the clinical trials of Ostomycure. This Norwegian med tech group has developed the TIES technology, which could be the solution for my problem. Otherwise I am searching for a qualified kock pouch-surgeon in Europe. Before that I will go to a university hospital in the nearness to get the tests, which you have mentioned, done there.

Kind Regards
Martin

Hi Martin, hopefully one of the male members will help answer as to the stoma location for males. I know for girls, most of ours are placed very low, so that when you insert the catheter, you can aim it down into the toilet with little problem. And, it's hidden below a bikini line for bathing suits and/or lingerie.

My stomach also ripples - it's from pockets of fat that develop sometimes above the old end ileo stoma, then below it and above the new stoma. The left side of stomach is flat - so I understand. But, mine is not herniated at all. I just gained so much belly weight and that is where it settled unevenly. I have to pull up the fat above my stoma and insert my cath. But it goes in with no difficulty.

Regarding your leakage, I am not sure who did your surgery. It's very specialized. We have found three Outside US that do the kock pouch and/or BCIR. Maybe one of them can consult with you and see if you just need a valve repair.

http://j-pouch.org/eve/forums/...531006091/m/23110816

OUTSIDE US:

Dr. Zane Cohen, Dr. Robin McLeod
Toronto, Canada
416-586-8346
http://www.mountsinai.on.ca/ca...-cohen-m-d-f-r-c-s-c
http://www.mountsinai.on.ca/ca...mcleod-m-d-f-r-c-s-c

Dr. Brian Taylor (BCIR)
339 Windermere
London, ON
(519) 663-3209

Professor Neil Mortensen
Dept Colorectal Surgery
John Radcliffe Hospital
Oxford OX3 9TATel +44 (0)1865 220926
email: Neil.Mortensen@nds.ox.ac.uk

Mr David Bartolo
Western General Hospital
Colorectal Surgury
Edinburgh, UK
0131 537 1000 (Main Hospital Number - ask for his sec)
http://www.surgery.ed.ac.uk/sp...ctology/bartolo.html

Best, Janice

Martin, I am curious as to how fat/thin you are...if you are really thin and are rippling or hilly then it may very well be a herni or 2..very possible with all of the surgery we suffer from...if you are not thin then it may be, as Janice said, fat deposites or pockets that build up to protect you naturally..They can be surgically removed..I will probably have mine done next year if I heal properly this year...
either way you are not supposed to be leaking at all...check out with your surgeon why you are leaking...you may need a valve revision and you can discuss moving your stoma to a more esthetically comfortable site for you...also when your valve no longer leaks you can just cover your stoma with a small folded klenex or a flesh colored bandaid...nearly invisible and after a while your skin no longer reacts to it...that is what I do now...no big patches and therefore no rashes or irritations...
Keep us posted..
Sharon

Hello Janice,

thank you very much for the addresses of the kock pouch-surgeons outside the USA.


Hello Sharon,

before the surgery my wheight was 68 Kilogramm. My actual wheigt is 56 Kilogramm (my height is 1,70 m). I am losing wheigt because I think that I should eat no sugar and no fat anymore. A TCM-doctor told me that sugar and fat is bad for me.

I don´t want to go to the surgeon who has done the surgery in July 2009 because I think he would tell me that I am a ungrateful patient and that I am not allowed to have "special wishes" (placing the kock pouch-opening at another place).

I had rather kept my ostomy. It was the best solution for me. Perhaps the surgeons in the university hospital in the nearness are removing my kock-pouch in the next months. Consequently my small instestine would afterwards be about 50 cm shorter.

At the moment I am deeply depressed. Sorry!

I have great respect for you, because I have read that you have had many surgeries in the past!

Kind Regards
Martin

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This message has been edited. Last edited by: <Madison49>,

Martin,
Your surgeon is there to make you healthy and your physical condition imparts on your mental health..it is a circle...do not think that he is doing you a favour in fixing something that is broken..that is his job...Talk to him and tell him that you are leaking and it is in a very uncomfortable place...let him know that there is a real problem and do not allow him to say to you that that is the best he can do...you would not accept a bad car or a broken computer so why would you accept someone who only half fixed your body...
Call and discuss it at least with his nurse or the stoma tech that works with him...
Sharon