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JenJen
I saw a similar post from December, but not many responses with the experience of having the J converted to the K. I really need some input on your experience with this type of conversion surgery as I am at the end of my rope with the inflamed cuff at the end of my j-pouch along with the attendant leakage problems. Steroids and Humira aren't working to reduce the inflamation and now my doc wants to try Remicade. Its been 2 1/2 years of never-ending nonsense and I ready to get rid of it, but am not enthralled with the idea of going back to the stoma & bag -- especially since I have extra-intestinal autoimmune skin issues which made bagging during the 3-step creation process very difficult. SO I have been reading everything on this website from all you amazing people and learning so much. And now I understand there is a "K" pouch that might be the solution to my woes.

Questions: Who did your conversion and when? Did they just use your existing pouch and then close and divert? Did you have it done laproscopically/small incision or open/big incision? I am scheduled to have a large incisional hernia repair which we hope will help with my frequent blockages -- but I am also considering whether to postpone to reconsider my options to or move forward with it so I can heal and have the abdominals that might be needed for the "K." Anything helpful you can offer from your experience would be greatly appreciated!

Bless all who read this and all of you I have come to know through all your helpful posts!

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M mamabärMember
Hello,
I let my J-pouch to turn into a Kock pouch.
It has made ​​a big cut in the abdomen. My surgeon took place to work.
because my j-pouch is too small, he enlarged with another loop.
I had my colectomy in 2010. I was annoyed two years with pouchitis and incontinence. let me make a decision about the kock-pouch was the best decision of my life. I'm very happy with it. because of my work came a stoma of the question. I found the time to stoma terrible.

I like to answer questions. Smiler

greetings,

Mamabär
M
Jan DollarJan DollarModerator, RN, retired
Another option you may want to consider is having the hernia repair done at the same time as the Kock pouch. They could use that incision as the sugical approach for the k-pouch. If you have the hernia repair done first and mesh is needed, the additional scar tissue may make the k-pouch surgery more difficult, especially since this is a large hernia.

I suggest you seek out a consult from a sugeon who would do the k-pouch before you have more abdominal surgery. I'd hate to think you might affect your chances for a k-pouch by being too hasty with the hernia repair. It may not matter in the end, but it would be best for the k-pouch surgeon to determine that.

Sometimes they can use your existing pouch. It all depends on what condition it is in, so there is no set rule on that.

Jan Smiler
Jan Dollar
skn69skn69Member
I agree 100% with Jan,
They do not do k pouches, even conversions from J pouches, through laporoscopy...only through open surgery due to the delicate surgery needed to create the valve...so it is more prudent and easier for your surgeon to create your k pouch (using or not the existing pouch plus the extra loop needed to create the valve) through the abdominal incision and then to fix the hernia while in there...speak to your k pouch surgeon if you have one and see if he can give you an idea of if and when he can do the surgery...better to have it all done at once...besides they don't like to do a huge surgery that soon after another if it isn't absolutely necessary...so it could force them to wait a few months if you have the hernia fixed first...
Sharon
skn69
K kaydbirdMember
I had a j-pouch for 12 years before going to a k-pouch. I had an awful RV fistula. I tried all sorts of drugs including remicade and I had multiple repair surgeries but nothing closed the fistula. I didn't want a perm ileo and found out I was a good candidate for k-pouch. I had a temp ileo while they were trying to fix the fistula, but when I went to the k-pouch they did NOT use the existing j-pouch (b/c some concern I might have crohns). 7-8 inch midline incision and also rectum was removed with j-pouch.

Its been almost 6 years now since i had it done and I'm very very happy with it, no complications relating to the pouch itself.
Honestly, we'd all really love to have a healthy colon or even a healthy j-pouch but those aren't always an option. Given my choices I know I made the best decision for me.

Good luck
--
katie
K
JenJenJenJenMember
Thank you, thank you, thank you ladies! I am new to posting and didn't have my settings set to notify me, so I got on today to check and saw all your valuable info.

Mamabear: I have had to use google translator with my german friends, so I totally understand! Thanks for your reply. Sounds like a similar situation and its good to hear that you had success!

Jan: You are such a great resource -- Thank you for your response! I am scheduled for the component separation hernia surgery this week and trying not to get too worried, but what you are saying is really what has been nagging at me. I think my good doctors here are each just looking at my issues from their different perspectives and not seeing the whole "long-term" picture. And I haven't been eager to go down to Cleveland Clinic away from my family to see the "next level" experts.

Sharon: Again, so much good info, thank you! Not probably what I wanted to hear, but better to know now what the "K" surgery would involve and how much harder it would be after the hernia fix. And like Jan, you're confirming my fear that I should be getting more info before moving forward.
JenJen
JenJenJenJenMember
Katie: Again, good to have confirmation the conversion would likely mean another big incision and possibly not using the existing pouch. Also good to hear you are doing well with the new k-pouch. I am better understanding the reasons for the popularity of the J-pouch, but also coming to terms with how difficult it is for some of us and that there is a point at which it is no longer beneficial. I see your location is Cleveland. I am in the suburbs of Detroit and have been told by my local doctors that the next step might be heading down to Cleveland Clinic. Can I ask who your doctor is and/or where you had your surgeries?
JenJen
Jan DollarJan DollarModerator, RN, retired
Jen, yes, I definitely would postpone this hernia repair until after you have consulted with your pouch surgeon. What may seem like a simple hernia repair could actually ruin your option for a k-pouch, especially if it is large and requires mesh. I think you are right that the surgeon who is doing the hernia repair is just focusing on that, not the big picture.

Jan Smiler
Jan Dollar
K kaydbirdMember
Jen,
I had my j-pouch done in FL where I grew up when I was just a kid. But all my more recent stuff was done at Cleveland Clinic. GI is Dr Bo Shen and surgeon Dr Feza Remzi.
They are both fantastic docs. Only a few do k-pouch at CC Remzi and Deitz I think, maybe one more but I am not sure. Remzi is now the department head, it may be more difficult to get an appointment with him.
At least CC is not quite the trek for you that it is for others if you decide to get a consult.

--
katie
K

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