Are BCIR's actually "better" than K-Pouch's?

Both of the BCIR surgeon’s have retired, so it is no longer an option. There are a handful of K Pouch surgeons. Mostly in Cleveland, New York City and Winston-Salem NC.

Interesting and good to know. Thanks.
Do you know why the procedure is essentially being "weeded" out? Is it the idea that J-Pouch's are always superior (in the same way of thinking about K-Pouch's), making these forms of pouches "obsolete"? Or is there something beyond that line of thinking?

If you visit the Quality Life Association Facebook page you can find more information. They have a website too. I am actually attending their annual member conference at the moment. There are some posts from the conference that may be helpful. I’ve had a K pouch for almost 39 years.

Ok cool. I'll check them out too. Thanks again.
One more question for you, if you're comfortable sharing--  In general, is there anything regarding your day to day life and dealing with a K-Pouch that you've found debilitating in any way and were you at all unpleasantly surprised to discover certain issues that non of the doctors told you prior's to surgery? (I was essentially lied to and baited into most of the beginning step of the surgeries I went though. So I just don't want another surprise when/if I get a K-Pouch surgery.) Any info on struggles you may or may not have had that is not in the proverbial textbook would be appreciated.

I would be glad to share more. I’m traveling home from the QLA conference today, so  I will try to reply soon.

David, it’s a tough decision you are going through and I applaud your seeking of information. There’s not a lot about the K, other than this wonderful  K pouch corner (keep in mind most of the posts are from people who have or had problems.)

One thing that was a tough learn for me was some foods and/or the consistency of foods can block the catheter holes. Foods that don’t break down, such as corn, mushrooms, peas– – to give you a sense– – get stuck in my catheter. This causes constant catheter removal  and re-insertion along with irrigation. I’m not sure if the undigested food that doesn’t get into the catheter is what causes my blockages or it’s some other reason, which has to do with only me and not K pouches.  Dense foods, such as a thick soup, will cause slow evacuation and multiple irrigation. Others have solutions for this. I rely on irrigation.

Another issue is the amount of time involved in evacuating. Although I disliked the extra little bag– – What a hilarious auto correct of external bag, so I kept it in – – overall I think it took less time. My need for extra time is attributed to certain foods that I eat. I’d like it if others chimed in on this comparison as perhaps I’m doing something wrong.

Limitations on food and time are my two biggest issues. If given a choice, external versus K pouch I cast vote with the latter.

Please ask for any clarification if this message isn’t clear. I hope you join our kpouch  family  Jan  

I

Hi,

Been awhile for me, first to jan15, I too had difficulty with foods passing through the catheter. Motility was a huge issue for to begin with so that left me very little food choices.

After almost 4 years I had it removed and now have an end ileo. Still dealing with some equipment issues, but I am so very happy, the stress I felt is gone and I feel like I have so much more freedom.I had prior Pouches so I’m not new to this.

For any of you Kpoucher’s, I have a ton of excess supplies! I live in Ohio, near Cleveland, for a short time yet this summer and in Florida for the winter in a couple weeks . Supplies at both spots.

Lots of catheters , Medina type, Ampatch and Lubes.   Anyone who would like these can have these free of charge!!

My surgery was sudden so I was ahead on a lot of the supplies.

Also if anyone knows of a place that would accept this, pleas let me know.

Good health to all of you

Janice😎

Thank you to both Jan's. I found helpful both answers quite helpful in different ways. Thank you. Highly appreciated.

I guess my one question left right now is:  how long a potentially difficult / frustrating does the whole process of emptying and irrigating the pouch, both on "good" days and "bad" ones?

39 years with a K pouch. I avoid mushrooms, pineapple and potato skins. Other things like corn, I chew extremely well and usually only eat it at times that are convenient for me. For example, I’m a volunteer EMT in my spare time, and I wouldn’t eat corn a day or two before a 12 or 24 hour shift, knowing that it would take me a little longer in restroom if I had to take out the catheter, remove the kernel of corn and re-insert a couple of times. Plus we can be dispatched at any moment so I try to be as quick as possible. I have always flushed the pouch with tap water when emptying. It’s just a habit I have had. I can be in and out of the bathroom in 5 or 6 minutes. I empty 3-4 times a day. Sometimes after eating spicy meals I may have to empty an extra time. I never have to get up through the night. Immediately after the surgery you would empty on a set schedule that starts out with frequent emptying and then gradually you increase the times between emptying.
Your question above:

When J pouch surgery is successful, patient’s are pleased because you go to the bathroom “normally” . But like any colorectal surgery where you are trying to get your small intestine to take over as a reservoir (which it was not designed to do) it can present challenges and complications and require some patience. My initial surgery was straight to removal of the colon and rectum to a K pouch. At that time (1982) J pouches were becoming available, but I was not a candidate for one due to ulcerative colitis damage of the rectum area in the parts that are preserved and used for the J pouch.
Once you go through a proctocolectomy, it is life altering. For me, the K pouch has been my new normal for so long- it’s just part of my daily routine. I went 35 years relatively trouble free. Then I experienced some valve issues that required a couple of revisions. It was a stressful time, but I’ve been back on track for a couple of years now. These specialized surgeries require a very skilled surgeon and it seems most colorectal surgeons are not interested in pursuing the training and the after care or complications. My surgeon says he has to be very precise with the construction of the pouch and valve. He said after a certain amount of time has passed in the operating room the intestines start to be like working with tissue paper. You need to have this surgery with someone who is working on k pouches very regularly- not once or twice a year  I hope this helped  

David

I'll get back with you, and our group, next week when I (hopefully) get video access to a conference recently held at Columbia.  It was in honor of Dr. Victor Fazio and led by Drs. Shen and Kiran.  A session on construction of the K-pouch, another on Pouchitis and other sessions surely of interest to our family of patients.  Part II is later this year.  

Will also get back to you with some of my personal tips on dealing with a K-pouch evacuation.   Thinking about what will be most helpful for you.  Kim's answer was excellent, spot on.  

Also, I am sorry that you are in this cross road at such a young age.  Jan

Jan15,

I saw a post on that recent conference. I assumed it was for doctor’s only. Is there a way to view it? I’m also glad to see the facebook post on Columbia Surgery’s page about Dr. James Church retiring from Cleveland Clinic and accepting a position with Dr. Kiran’s group in NYC. I’m hoping some add’l K pouch surgeons will be mentored by these surgeons, to ensure the K pouch surgery continues to bee offered.

I also assumed limited to doctors, but my sign-in went through.  Spoke w Dr. Shen this past week about recent surgery.  By way of thanking him for allowing patients to attend the conference he said patients are welcome.  He also explained that the first session--covering surgery--included K pouch creation.  Ok, to your question.  Dr. Shen said symposium would be on video.  It isn't.  I contacted the coordinator for Columbia's symposiums, and await a reply.  If I don't hear in good time I'll re-contact and/or ask Dr. Shen.  ( I am to send photos of a Marlen 34 Fr upon which I surgically increased the size of the holes.  Will also post photos on this site.).  

BTW, I'm impressed you can eat corn.  I eat it at home with nobody around.  Get the flavor by chewing but spit it out.  Disgusting?  Yup.

I would love to see the symposium info on anything K pouch related.

Hi David,

I am one of the oldies on here, 42yrs with my K pouch and quite a few revisions to be able to keep it (essentially due to my underlying disease, Ehler's Danlos syndrome which keeps my body from healing correctly so things come 'unglued' or fall apart easily).

I LOVE my K pouch. It is not just a lifesaver but a life changer. I couldn't, at 18 deal with the idea of an outside bag. I couldn't deal with another ostomy...I had had a colostomy at age 2...not a great success and I got reconnected only to leave me functionally incontinent. My battle to not have a bag led me to gracillis muscle grafts and an assortment of various medical tortures...In the end...this is what gave me a life.

I was able to go to school, move away and travel.

When I am good (mostly high protein diet with lots of blended veggie soups, some raw veggies, a bit of this and that...nothing forbidden except what has been already mentioned by others) I can be in and out in under 4 minutes...I drink a lot of fluids, love prunes and grape juice, and nibble on raisins to keep things going...I drink carbonated drinks and am very active...I also sleep through the nights without difficulty.

What is the difference between the two pouches? The living collar on the BCIR. My K pouch surgeon gave me one about 10yrs ago to give my valve more stability. Do I like it better? NO, not really, but it works. Many K pouch surgeons do a modified living collar now...Which means that both types of pouches are essentially similar.

I am going back into O.R. tomorrow for a little clean-up in my abdomen and my surgeon will take a peek just to make sure that my pouch is where it belongs and doing what it should.

Personally, I highly recommend it. But it is a very personal choice. You also have to understand that the after-sales service is limited to a small number of surgeons...so if you do not heal well, it may be a problem.

Good luck and P.M me if you need any advice.

Sharon

posted info in another chat room.  let's get back to David's questions on this thread.  ok?

Hi David, Sorry it took me awhile to look at this, you wanted follow up on how long it could take to empty the K pouch. In my case minimum of 15 minutes, normally 20/25, and up to 40 . And this would be about 10 to 12 times a day.

I got almost no sleep at all. I needed to use an enema bottle to thin things out to pass food. I was restricted to very low fiber foods.When my K was removed 3 blockages were taken out and many adhesions, so I’m sure this had quite a lot to do with the issue. A large problem was also the catheters which are more flexible than they used to be. BTW if anyone if South Florida is interested, I have plenty of these and Ampatch and Lubs left over anyone can have!

Good Luck to you ,      

Jan