Back from Mayo Clinic......

They think the only thing needed is the J-pouch and Brooke Ileostomy, I said a lot of people have and want the Kock Pouch, they seem to think it is no longer being done....which I started naming off places it is still done. We need to speak up or watch this become obsolete in the future. We can't afford to let this procedure not be taught for future generations.

I just got back from a pretty grueling trip to Cleveland Clinic in Ohio. I was supposed to meet with a K pouch surgeon but the GI office on my end messed up and so did CC! I even called to ensure I would be meeting with a surgeon who performs K pouch surgery, was put on hold, and then told "Yes, Dr. Stocchi performs K pouch surgery." So after an 8 hour drive he told me he doesn't do this surgery. So my decision is very easy now. I will have a BCIR in St. Petersburg, FL. I'm going where they actually WANT to do a continent ostomy. My husband points out that it's not always a bad thing to be "for profit". Good business people make sure the client is happy with their product. At this point, I not only agree, but I also think CC is highly over rated. Also, my husband learned that CC's billing tactics are often questioned. Again, I'm sure CC works for those who have an appointment with the RIGHT surgeon (LOL) but I felt like I was treated quite poorly once I mentioned K pouch. I spoke to at least 7 different people on Tuesday while there. After saying clearly I had no large intestine, two doctors asked to look to see if I had an anal opening (!!) and even though I said over and over, "the Wound Nurse tells me my stoma is exceptionally small and abnormal", NOT A SINGLE DOCTOR OUT OF 7 who met with me on Tuesday, EVER looked at my stoma! Obviously, CC is much too specialized. I would have thought meeting someone with an ileostomy for 42 years would be a very interesting event for them. Obviously, they thought my bloating and pain I feel (my BP was 135 over 95 and is typically 115 over 71) was nothing unusual. One doctor even told me, "You've been good for 40 years, right?" Like this should mean something??!! I felt like asking him, "and how long have YOU had an ileostomy?" ugh. I'm getting a BCIR. Easy choice after Tuesday's fiasco. wow.

Lifescircle, I’m sorry to hear that you did not have a good experience at CC. My contacts with the “Big Boys” (Mayo and CC) did not lead to an outcome compatible with my desire for quality life, so I had a BCIR in Florida. The care I received from Dr. Rehnke and the staff at Palms was top of the line. Although I had some “bumps” during recovery, everything cleared up several months post-op and I am doing very well now and feel that I made the right decision. Please PM me if you would like to talk.
Bill

Thanks, Bill V. I've seen and read your posts on websites and hope others continue to post, sharing good and bad experiences. It's really help inform me. It's an excellent idea to hand all GI docs and surgeons the website addresses so they can easily access firsthand patient accounts pre and post op. It might be eye opening for them to know they don't have all the answers, but they do have skills we desperately need. Best to you all!

Jasmine-so does this mean Mayo Rochester is willing to treat you POST-K pouch/BCIR? They told me they wouldn't make one because the re-operation rate was too high, but would refer me to FL if I really wanted to try it. For now I am medically managing my issues, but I know that is probably not going to last forever-been trying to consider if a K/BCIR would be worth it when the day comes, as I can't afford to travel cross country for follow-up care, even if I could find a way to manage the initial surgery, but I could probably get my local docs to refer to Mayo Rochester for care, if needed, even if they wouldn't DO the big surgery.

The Mayo Clinic will fix the Kock Pouches they created. I had mine done by Dr. Beahrs, who is now deceased, in 1978.

I am trying to convince them to do them again. They think the Brooke Ileostomy or J-pouch are the way to go. All I can say is ask for Dr. Tremaine or Dr. Dozois when it comes to the Kock Pouch. Maybe if they see people want them, they will bring them back.

I'm surprised the Insurance doesn't demand the Kock Pouch. Since having a Brooke Ileostomy costs around $1000.00 a month for supplies.

Since you are from WI, I would suggest CC, Cleveland Clinic, I think it's about 8 hours away from south central WI.

I was told by the Mayo Clinic they aren't being done anymore. So I started naming off the places they are being done. Then I told the Mayo Clinic, of all places, they should be doing them because they are one of the top hospitals in the world!!!!!Dr. Tremaine is the Specialty in the GI Department, Dr. Dozois, is Professor of Surgery and would be the one to teach and do the fixes on the already created Kock Pouches that the Mayo did in the first place.

Be an advocate for the Kock Pouch/BCIR. The more doctors that hear about it, and hear people want it, the more it will be done and the more doctors will learn the procedure.

Doctors need to come to this site and see, that the Brooke Ileostomy and the J-pouch aren't trouble free. They become the patients nightmare, not the doctors after they are done.

Hi guys, I just wanted to say that I had the kock pouch done at Cleveland Clinic by Dr. Dietz in 2012. He did an awesome job, I would recommend him highly! I haven't had one problem with it! I love it!

Awesome posts, everyone. So glad the K pouch is successful, Grandma64! If only I'd had an appointment with Dr. D, my experience would be much different, I'm certain. I was told they tried to page him but he was not responding all day I was there. May I ask if you've ever experienced pouchitis and what sort of foods you now avoid (if any) and what foods work well with the K pouch?

There is no uniform experience with a K pouch regarding pouchitis and foods your pouch will or will not do well with. I had pouchitis during the first 3 months following surgery (while my pouch matured) and it was treated successfully with antibiotics. Since then (just over a year), I have not had pouchitis. As far as foods are concerned, I now eat most anything I want, being sure to chew it well. I am careful with corn (eat only corn with small, tender kernels) and also vegetables that are stringy, like asparagus. Certain starchy foods like mashed potatoes can thicken the output and make emptying the pouch more difficult. Generally, the worst case scenario is that particles of undigested food will clog your catheter. In this case, I withdraw the catheter, remove the particles and re-insert the catheter. This is merely an inconvenience and only extends the time to empty your pouch.
Bill

When I first got my Koch pouch 36 years ago, I went on a diet to lose weight and it included eating a lot of carrots. Big mistake! Even though they were well chewed, there were just too many little heavy pieces to flow out through the catheter. Also watch out for certain vitamin & mineral supplements in tablet form -they don't always digest and they can collect in the pouch and you won't know it unless one gets caught in a catheter hole and you carefully extract it. I stick to capsules. Also, for me, spaghetti with a tomato meat sauce causes such thick output that it will not flow through the catheter. A small amount of spaghetti and some fruit juice work much better, but I usually just avoid it altogether. And right after surgery, following all those antibiotics is difficult because your gut isn't balanced yet with microbes. Take it slow and eat things in moderation until you learn what works for you.

I just paid the price for having my 'fruit day'...ate only fruits (bananas, peaches, a whole pineapple that I chewed and spit out, watermelon etc) then had a large salad for diner...yikes!
Went to work this morning after trying to empty things out for 4hrs then had to empty every hour for the next 5.
Mostly just plucking out roughage from a terribly clogged tube but I couldn't get the gas out because the tube was constantly blocked.
This summer I was on chewable probiotics (the costco kind) and really had very few problems even on fruit day...now I am on a probiotic pill that doesn't seem to do the trick as well so things look & feel like a ball of wool.
So, yes, chewing is a must but you also need to know your limit (something that is very hard for me).
If not, other than corn, peas, beans and cooked spinach I can do most foods in moderation, even asparagus, leeks and artichokes...I just stick to eating the tender, non-stringy parts.
And yes, carbs need limiting or it all turns too thick and hard to empty.
Sharon

One of the meds, I found that didn't completely dissolve was Allegra, for allergies. One day I got out like around 7 pills. So be careful, I don't suggest this med unless it comes in capsule form, the one I took was pill form. This was before my valve stricture and bend, years ago with a working valve.