Calling all failed j pouchers and end ileos who want a change

It does seem a shame that surgeons aren't learning to do k-pouch surgery since there are people who do very well with them. Not to mention all those who had k-pouch surgery before j-pouch surgery was even available and will need qualified doctors for k-pouch maintenance. Of course, I have no idea how much more training a colorectal surgeon would need in order to add k-pouch skills to j-pouch skills.

This is quite an endeavor Sharon. I hope you're very, very successful!

kathy

Thankd Kathy,
I am open for any suggestions or advice too.
Sharon

I think that there are a lot more CR surgeons in the US that perform the k-pouch that we just don't know about. I recently discovered that my surgeon does the k-pouch. I never knew that?

You might want to join forces with Holly from FLA. She was on a quest to get this surgery made more prominent. I think she even did a presentation at a CR surgeon annual conference.

Sue

I was well informed about this as an option by both my GI doc and surgeon at CC after it was determined my jpouch failed. I was also given a pouch redo as an option. Instead, I chose the permanant ileo. So don't know if its different in canada.. but it seems to be known in the US.

Most interns can't do it, they aren't experienced enough. These programs are expensive since this type of surgery is very hard to do an a lot of surgeons have to take 3 years off of their practice to learn how to do the surgery. That means they lose $$$. I would def hook up with the Quality of Life Association, they are only about continent ileostomies. There are a lot of us out there. My surgeon alone has done over 3k so I can't imagine how many more from other surgeons are out there.

The education needs to be present and nurses in hospitals need to learn how to hook a foley up to suction. It isn't rocket science. I can take care of my own after surgery if needed. People are stuck in old ways sadly. It is easy to just put an ostomy bag on someone if their J pouch failed or they don't do jpouches and just say " get an ostomy bag." Sad thing is most doctors don't care and want the easy way out. My cousin is a GI specialist and kept saying "just get a bag", when I got the BCIR he couldn't be bothered hearing about it.

The QLA conference is coming up in September in St Petersburg Florida. A good place to get started and hear the latest in the world of Kpouches, Jpouches and BCIRs.

Vanessa, your cousin sounds like a couple of colorectal surgeons I have talked to. An ileostomy is so much easier for them and one of them doesn't even like the j-pouch. Though, they both ended the conversation by saying something like "...BUT I can understand why a patient would want something different."

Best I heard was.. A lady had a GI that was so against Continent Ileos like the K and BCIR. She told him to wear an ostomy bag with chocolate milk while playing his next game of Tennis. He quickly changed his mind. It just gets old hearing doctors give opinions they honestly know nothing about. One doctor told me he wasn't a fan of the kpouch but couldn't give me one reason why. I don't get how doctors don't want to learn things that can change the quality of someone's life. That is what we PAY them for. For me as a business owner and Art director I always like to learn new things. There is so much out there, it's fascinating, so it should be that way for a rich doctor who basically works for us.

Hell, I don't even think these options are enough for the year 2012.

Oh, I agree that these options aren't enough for 2012. I think all the pouches can be great for some people, but you think there would be more these days since living without a colon comes with issues regardless. I don't know what else could be done, but I'm sure the researchers and doctors who are smarter than me could figure it out. Bringing more attention to the k-pouch/BCIR is a good start though.

I believe stem cells are the way but with the FDA and how corrupt this country is with corporate greed with the pill industry. We aren't progressing much.

ok, so at least I am getting some interest in the idea...it meams that I am not alone out here...they do not need 3 yrs to learn how to do a k pouch...if they are already C.R surgeons and do a j pouch it is really just a matter of a few weeks of training to get them ready to do k pouches...doing a dozen is sufficient to be up and running as long as theyhave a good support group of surgeons to back them up. As for the team, it takes less than a day to train...I have done it myself in Paris on numerous occasions when having surgery...trained my own team. Not a problem.
So, you have given me some good info...I will be seeing Holly this week I hope to brainstorm with her and see what can be done in the states....now to find out whether it is better to start a non profit in the States, |Cananda or France.
Sharon

I was told 3 yrs for the BCIR. Hell, they don't even have to be CR surgeons. Mine was a general surgeon that did the BCIR and he has done over 3k flawlessly.

I have been in the ER where Nurses won't even touch me. I have asked for the foley myself and suction machine and I'd do it. Really pathetic they can't follow simple instructions written down for them.

One good thing about going to Baylor where I am at, it's a teaching school so they always have students so when my doctor has one in the room I show them my stoma and tell them to go back to their classroom and teach people what they learned! lol

Hi SKN69,if your doctor were to perform said surgery what hospital in Toronto would he be working out of.My guess would be MT.SINAI on University Ave. in downtown Toronto.Thanks for always looking out for us.

Hi Sharon,

I hope you are reading Eric's post in the Rant & Rave secion re Kock Pouch success. Barb says that, like me, she has had an ileostomy for over 20 years & not one doctor mentioned to her about Kock pouch surgery & that she had that option. Again, like me, she discovered it herself on the internet. Your work promoting Kock pouch surgery is definitely needed! Any update for us as to what is happening in that regard? - Dixie

The K pouch? Don't know what you're talking about. Must do some research.

Hi Guys,
sorry for the prolonged silence but have been out of town doing some research and logging in hasn't been easy.
Dew, a K pouch (like a BCIR) is a continent ileal pouch, built in the abdomen at the level of the ileum (around where your appendix is or used to be)...they build it, just like the j pouch, out of a piece of small intestine, somewhere around 3 feet of it, and then they build a continent valve at the end of it that they bring out to the skin forming a stoma. The pouch holds your waste and even, in time, starts to take over some of the functions of a colon and absorbs liquids and water based nutrients. In order to empty your pouch you slip and narrow catheter into the stoma and 'woosh' the waste pours out into the bowl. The waste remains liquidy in there because you no longer have a colon but if it becomes too thick you just drink some juice or tea. On the outside of your body the only thing visible is your tiny, belly-button sized stoma that you cover with a pad or bandaide or a folded up kleenex.
Most people who get a k pouch or Bcir are thrilled and go on to live perfectly happy and normal lives although some of us need a revision or 2 to get things right or fix a slipped or broken valve.
You can eat pretty much anything with a k pouch and only have to beware of chunky fiberous things...you know when to empty your pouch naturally when you feel full and usually most of us do it about 3-6xs a day tops. It takes about 2-5mins and there is no pain or discomfort involved.
I have had mine for 33yrs now and love it and would like to continue to promote the teaching of the technique and the increased availibility of the surgery world wide.
Sharon

Hi Sharon,
I had never heard of the K pouch until reading on this forum. What I've read in addition to your excellent summary of how it works makes me believe it would suit many of us who have developed or lived with J pouch issues for such a time we have reached the end of our tether. I would love to be in a position to discuss it as a possibility with my CR surgeon when I see him next in January. I wish you every success in your quest.

One question: What stops the K pouch leaking through the stoma?

Dave

The valve stops it. The valve is a lock and the catheter is the key. Can't go to the bathroom without a poop tube.

Thanks for that vanessavy. Am I correct in that the formation of the valve may be why there are no so many surgeons perfoming K-pouch surgery due to learning skills or is it something else?

Also wondering if the potential of blockages of the tube are of a concern and if that dictates diet at all.

Sorry for all the questions but I tend to prefer answers from "end users" rather than the manual writers!

What if you lost or broke your catheter. Is that ever a concern. And what about passing gas?

I was never given any info abt a k pouch or BCIR by any dr or medical person I found out abt them here. I hadnt thought abt it but now that Im having problems with my j-pouch, Im thinking this might be my answer.
Thank you Sharon for doing this. Def count me in as an interested j-pouch pt.
Dovie

There is a very informative book on Amazon.com called "Colitis be gone. Tips and tricks of the BCIR." For 12 bucks it tells you a lot. In a nutshell since i am typing on my phone on vacation. You chew your food good so that helps with food getting stuck in the tube. I eat salads, popcorn, watermelon, beef, chicken, kale, creamed spinach, peas, etc. Diet changes as my pouch digests more. I am 8 months post op so it is sill always changing. I experiment. Worst case you pull the tube out pluck what is in there insert and finish draining. I drain my pouch 2-3 times a day. longest being 19 hours. In that BCIR book the man addresses not having a tube on him once and he went into Ace hardware and bout tubing and a file and created his own tube. I know others that make their own for basically a dollar each. I buy mine in bulk, insurance covers them. Keep ine in my car, few at
home, work and my mom's and one on my person. It's just natural to grab it now. I don't think twice about it. And I save sooooo much money on toilet paper using a tube! ;-)

Anyway, as far as gas I have gas when i have a bacteria overgrowth infection only really. Otherwise when I drain gas usually comes out at the end. Also a sign my pouch is empty and done. Or you just stick your tube in to release gas. I believe sharon suggested using a urine catheter for gas that way you don't have to fully drain the thing. If i feel gassy I drink water and move around. I always say the pouch would be real awesome if next to the stoma if there was a pin hole that you could unplug to release gas lol but lately I am ok.

I always travel with 3 full kits on me. 1 in my purse, one in a fanny pack or smaller purse that I wear close to my body slung across my shoulder and Never take off while traveling other than to go through security check at the airport and yet another in my carry one bag...that is usually enough.
My kit is made up of a make-up bag or pensil case (preferably with a little side pocket where I keep a couple of spare packets of lube and a patch or kleenex), mini packet or lube, 3 different tubes in my case since I have had valve complications: 1 Marlen tube that is softer and has a bullet tip, a normal medina tube with the 3 hole tip and a tiny urinary catheter that I can slip in even if my valve is kinked or over full plus my 60cc syring for irrigating my tube if needed (when things are too thick in there) and/or a mini water bottel with a squirt tip that I fill before going into the stall...it makes cleaning out my tube in public a snap and gives me water for irrigation if needed and I no longer feel self-conscious about filling a syring in a public toilet.
With 3 of those kits I feel safe traveling around the world and have never had a problem thus far.
In case I lose my cath I can walk into any medical supply story, pharmacy or ER around the world and get a rectal cath for enemas or a urinary cath to ease the pressure until I get home. If I am out of lube I can use water or olive oil...if I don't have stoma patches (which I rarely use because I have too much mucus) I use folded up kleenex...so no panic.
Sharon

In reading old posts I see that Sharon was starting a campaign to recruit doctors into learning how to do the K-Pouch or BCIR Surgery. This is something that concerns me very much. Was anyone succesful in recruiting any future BCIR Surgeons? ALSO I AM NEEDING TO ORDER A GOMCO INTERMITTEN SUCTION MACHINE for home use (it's been 5 months since my BCIR Surgery? Anyone else use one?

I am also interested in hearing more as I've about reached my limit with my j-pouch and have started to consider a permanent illeo. But I would definitely like to find more info on the kpouch and the BCIR.

Oonja, there is a lot of information on the internet about the kpouch and BCIR. I researched both procedures after my GI found high grade dysplasia and said my jpouch had to go. I definitely did not want the bag and its associated issues. Both of these procedures are often selected by those with failed jpouches and problematic or unwanted ileostomies and have a high success rate and patient satisfaction. I had BCIR surgery by Dr. Ernest Rehnke at Palms of Pasadena Hospital in St. Pertesburg, FL and have had an excellent outcome. I suggest that you check out their website at www.bcir.com. They can send you a listing of about 300 BCIR patients who have consented to talk with people considering this procedure. I talked to 6 of them and found it very helpful in making my decision. Please feel free to send me a PM if you would like more information or would like to talk. I have a sister in Lewiston and have gone skiing at Schweitzer.
Bill

I support the idea for promoting anything that improves the quality of life of IBD sufferes and Cancer sufferes who may need this but for me the concern will be the length of the intestine used if i am right its about 3 feet close to a metre, at the moment i have a loop ileo and i am missing about 70cm of my small intestines and oh boy the liquid output is hard to control what more if i lose 3 feet, i guess it could be ok since some already live with the k-pouch

mt,
The creation of a k pouch would not use up an extra 3 feet of your intestine...the 3 feet would be turned into a k pouch which works as an absorbtion devise...meaning...it is not lost. Your body will absorb what it needs to through the small bowel and end ileum including the k pouch. The only length of small intestine that is not assurring its original function would be the 5-8 inches used to creat the continent valve.
I have had numerous revisions on my k pouch that cost me a lot of gut...but I have never suffered from short gut syndrom or any other such problem...as my surgeon...if you are gaining weight then you are absorbing! (trust me...I am gaining weight!)
sharon

Hi skn69,

I have a question about the BCIR - how does it work if you already have a j-pouch? My j-pouch has gone "floppy" after 14 years of good service. Presumably that part of the bowel cannot be used again for the K pouch. So would having the BCIR mean they have to take a bit more of my small bowel to make the K pouch?

Thank you for posting information and letting people know about alternatives.

Cheers,
Sarah

Sara, here are my two bits on your questions. You would have either a J pouch OR a BCIR (or related K pouch), but not both at the same time. Typically, for a failed J pouch, it is removed and then the BCIR or K pouch created from a remaining part of your small intestine (30 cm or so). I have read that in a limited number of cases, the J pouch can be used for your new pouch, but your surgeon would need to make that decision during surgery. You should have plenty of small intestine left to make a K pouch if the J pouch is discarded. My j pouch was discarded and the BCIR created from remaining small bowel and I have no absorption problems or related health issues.

Is there a chance a surgeon in Australia can re-construct your present pouch so it functions properly? I can’t think of any other ways to attempt evacuation of your J pouch, and hope you can find a nurse who can offer possible solutions.
Bill

Hi Sarah,
A good and competent colorectal surgeon could possibly rebuild your j pouch and make it smaller and less floppy...in the meantime you could self catherise yourself by using a 28-32 medena or other rectal catheter.
It even allows you to irrigate your pouch to remove as much fecal matter as possible...it is an alternative.
Some k pouch surgeons reuse the j pouch, especially if it is not suffering from chronic pouchitis.
In your case it could possibly be cut down to size and reused...but as Bill said...you have enough small bowel to make another pouch and use it as a k pouch...find out who does them there and send them a copy of your file for consultation.
Both the k pouch and the BCIR are good alternatives if you cannot have your j pouch fixed.
Good luck with whatever you decide and ask as many questions as you need.
Sharon