K-pouch or ilio i need advise I am 40 years old I got UC at 19 and suffered for 15 years had my son at 30 with no problems really. Had a total abdomanal colectomy with J-pouch in 3 stages Oct 2004 and Jan 2005 twice. I have had nothing but problems since. cronic pouchitis I have been on cipro for 3 1/2 years now straight and am sick of yeast infections and trush. Cuffitis thats seems to never go away and my lasted.Since May of this year. every time i get my monthly (every 21 days) i bleed from my rectum and my vagina. for at least a week. then at that piont im severly anemic and need a blood transfusion. so on my last straw i told my surgon to fix me. No drugs no new treatments just fix me so here are my options 1. Rectal surgery removing the cuff and bringing the pouch down and sewing it 2. remacaide or humeria (I know i spelled that wrong i am sorry) i did remicade when i had colitis and it worked for about a month. 3. convert back to an illiostomy or 4. A k-pouch or T pouch Im so confused and i have no idea what to do he has me booked for the recal surgery Oct 8th so Help any advice is welcome please.
Thank You Desiree

singlmom

Hi Desiree...you need to ask your surgeon exactly what he/she is performing. Not all surgeons are skilled in doing a kock pouch, we do have a list of surgeons in this section of the forum that we've found to-date that do them regularly and are very skilled and near the RI area.

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

It would be up to you to decide if you prefer going back to the perm ileo or pursue a kockpouch - your surgeon should be communicating your options. If he/she is not familiar or against a kock pouch, I suggest rescheduling your surgery until you have had a chance to research and consult with another surgeon and decide what is best for you and your lifestyle (and your health history).

good luck!

This message has been edited. Last edited by: JaniceM,

Desiree...I agree with Janice...don't do anything without more information. I don't have your same problem, but I am in the same boat with deciding on what to do next. I have a fistula that can't seem to be repaired and after having been given numerous options I took Janice's advise and saw Dr. Launer today. He really helped me to make the decision to go with the Koch Pouch and get my life back on track....thank you Janice for the referal.

It's important to know and weigh out all your options carefully and not rush into any procedure that you might later regret. It sounds like you are at your wits end, but better to take your time. Had I investigated all my options better last year I would not have had to go thru all the surgeries I've had and would have just done the Koch Pouch. It's not for everyone, but I refuse to have an ileostomy again...

Good luck...Susan

Ok, I agree with Janice and I have had a k pouch for 30 years and have just lived through 13 revisions for a slipped valve, complications and hernias..and I still would not trade it for anything else in the world...for a good reason...when it works you have 100% freedom...you do not have to glue bags to your skin or wear any sort of outside appliance...you travel around with a tube, some lube and a syringe or water bottle in a little make-up pouch or a pencil case and go and do anything that you want...and trust me..I have ...it is discrete and practically invisible if you cover the stoma with a patch..but...and here is the big but (sorry no puns intended here!)....it takes a skilled surgeon to create and follow up with a good k pouch..not just anyone can make one and you should address yourself to someone very competent...there can be complications that may recquire revisions for anything from a valve slippaged (the most common problem but with new techniques it is less common) to peri-stomal hernias (can have those with a normal stoma too!)...so...it just depends how lucky you are and how stubborn if you are not so lucky (I get extra points for stubborn! )...
Those of us who have a working kpouch would trade it for nothing in the world but some of us have problems and give up on it...I have had both but am hanging in there because I may not be very lucky but I believe that it is the right choice for me...but only you can decide for yourself...
Hope I helped some with this
Sharon

thank you all for the advise I did all my research and I an possitie I want the k-pouch. I cannot trvel to get this done so now my task is to find a local surgon who is capable of doing this

Is there any way you can travel? This is NOT the kind of surgery that just any GI surgeon can do. The valves are VERY difficult to do. Please, consider guys like Dr. Fazio, Dr. Bauer in NYC, -- there are a couple of surgeons who do the K-pouch or BCIR. Which is a version of the K-pouch. The BCIR is done in Florida.

i have a colorectal DR he is the one who did my j-pouch

Matthew Daniel Vrees MD
Cleveland Clinic Florida
Now he is in RI he would be the Dr who would be doing it

Desiree, just a note...not all the colorectal surgeons at the cleveland clinic are trained and have performed several kock pouches. It's a much different surgery then a jpouch and requires hands on experience -especially in converting from a jpouch to a kpouch or bcir.

Since he's not on the surgeon list, I'll contact his office and see if I can verify his experience. We're always looking to add qualified kock pouch surgeons! More may be out there that we haven't identified!

Note: I called his office and the front girl said no...she had no idea what I was saying. When I asked her to ask his nurse, she said they did do them. Not sure of his exp. level.

This message has been edited. Last edited by: JaniceM,

ok I will how many is concidered enough experiance

Well, at least several by himself (not just assisting). It's not that common of a surgery, so he will probably only have a handful. He may very well be a great surgeon.

I suggest that he provides you with one or two patients that he performed the surgery on so you can call directly to see how they are doing. And, ask if they went from a failed jpouch to a kock pouch as that's a bit more complicated as the surgeon has to decide whether to use the existing jpouch for the kpouch or start over (and decide if to remove the rectum and/or spincter muscles).

i had my rectum removed when i had me total abdomanal colectomy

Janice,
Actually Dr. Kaiser at USC performs the T-Pouch at USC, which is a continent ileostomy. He has done only about 30 of them and I am not sure of his success rate of his version. He is originally from Sweden but has had a lot of his education is the USA.
Desiree, good luck in your next surgery. I feel so sorry for you with your current problems. No one shoud have to go through the daily issues you are experincing.

Thanks Donna! I added him to our surgeon list.

Not sure how many members have a Tpouch. I did hear from Dr. Launer that the T-Pouch is a modification of the Koch Pouch that has been around for at least 10-15 years.

All modifications of the K-Pouch (T, Barnett, U, S) are associated with a 15%+ incidence of valve dysfunction that necessitates re-operation.

Desiree, maybe that is what your surgeon is going to perform, let us know!

This message has been edited. Last edited by: JaniceM,

I know of only one who had one several years ago with Dr. Kaiser and she had many problems and had it diverted to an ileostomy. She did her homework with other versions of continent ileostomies and went with the T-Pouch since the valve seemed like an improved one. I have not seen her name on this site for ages so hope she is doing well now.