K-pouch doctors at Cleveland Clinic - any experience there?

 

I also had j-pouch surgery at Mayo Clinic – Rochester and it lasted 30 years before the appearance of high grade dysplasia made removal necessary.  After the dysplasia was discovered, I went back to Mayo for a second opinion. All they would give me was an ileostomy, which I vehemently did not want.  I had heard that Cleveland Clinic was highly rated for k-pouch surgery and dealing with j-pouch and k-pouch problems.  I submitted applicable medical records with my inquiry for a k-pouch, but was rejected (they never gave a reason).  However, I would encourage you to contact them based on their reputation and proximity to your home. 

 

In the event that surgery at Cleveland Clinic does not materialize, I would consider contacting Dr. Ernest Rehnke in St. Petersburg, FL. He did my BCIR surgery and I can highly recommend him and the hospital staff.  Although it involved a 12 hour trip by car and plane (I live in northern Wisconsin), it was well worth it for me.  I wish your husband the best!

Bill

Dr Fazio doesn't practice anymore. Dr Remzi is my surgeon, he's great. Never met Dr Dietz or Kiran but Dr Ashburn does K-pouches and she is nice.

I'm sorry, but what is a k-pouch?

 

dianne

My J-Pouch surgery was performed in 2008 by Dr. Dietz.  He did a great job.  I haven't had any issues with the surgery.

Here is another extremely content patient of Dr. Dietz. He preformed my j-pouch surgeries (three stages). Great surgeon. In terms of his bed side manner he is an excellent listener, direct and terse. I personally really liked his style.

 

I also can't rave enough about the Cleveland Clinic itself. The infrastructure and staff are amazing. I live in Seattle, had to fly out for every surgery and know it was an excellent decision.

Dianne,

A k pouch is a "continent ileal reservoir" with an abdominal stoma.

In other words...a k pouch is identical to the j pouch with a different exit. Instead of using the natural exit (they close it off and turn it into what some call a Barbie Butt) they put the pouch in the abdomen and build a one-way valve that exits out through a stoma.

You use a tube into the stoma to remove the contents of the pouch which remain liquidy and pours out of the pouch. (some people drink prune, grape or other juices to keep the contents liquidy...I drink a litre or more of coffee every day and orange juice plus lots of water to keep things loose).

With a k pouch you have to be careful of eating too much fiber that can clog the tube up. When it is clogged you just pull it out, unclog it an put it back in. 

I carry a little bag (a pencil or make-up case) in my purse. It contains a tube (strait or curved whichever works best for me that year), mini packets of lube (one lasts a week for me) and a 60cc syringe that I use if I need to irrigate out my pouch. In my purse I have a baby sized water bottle with a sports tip that I fill before entering a stall so that I can easily rince out my tube. The I dry everything off with paper and put it all back into the cases. When things go well it all takes about 3 mins. 

When things are clogged up or thick it takes longer.

There are a limited number of k pouch surgeons in the U.S. and around the world so that when you find one you keep him close. 

The k pouch lost popularity, somewhat, with the advent of the j pouch but since there have been a number of j pouch failures the k pouch has become popular again. 

The weak point is its one-way valve. It can be difficult to create and fragile. It can slip, twist or tear. So we are nice to them.

Hope that this was clear...

Sharon

Daughter had k-pouch  build and rectum removed  by Dr. Dietz in 2012. Wonderful job. Post op. a bit  rushed. We are in Farmington Hills, MICHIGAN.  Have you gone?

Had my K pouch done by Dr. Dietz in Nov 2011. Thought he was excellent! Cleveland Clinic was great to me. Prayers and well wishes being sent! 

hi all,
can't find where i first posted my inquire about k pouch, but because i am nine hours away from seeing dr. dietz at cleveland clinic i thought to post on this thread. can't wait for it to be all over..... it is so good to know i have your support as am here by myself, have no friends in all of ohio, and despite telling myself this is a resolvable problem that only takes time, there is a dark cloud lingering above me.

thanks especially to sharon, bill and jan for their input when i did write. it was all very helpful. since then, and two weeks ago, i had a consult in nyc. the crazy day started with a ct scan with 1 1/2 liters of fluid up the poop hole into the stomach, then to another office for consult and scope, then to another office for another consult and yet another scope, this time with biopsies. no food or water all day. just about the same forms to fill out in each office. and by 5:00 i made a mad dash to pick up luggage and get the 6:00 bus home to boston. the second doc, calling the next day, asked why i didn't stop back at his office for another consult???? anyway, prior to that day i had decided to get a consult at cleveland as they take medicare and the nyc doc doesn't. it's about mucho $$,$$$.

the nyc doc thinks my pouch was incorrectly constructed--probably right--and he proposes fixing it, or making a new j pouch. i think not, as thin anal skin is problematic as is an abrasion, caused when a nurse pulled out a metal tester--it will never completely heal. most importantly is the chronic pouchitis, which other doctors think will reoccur in any new pouch. way too much talk about this option of a new pouch, but finally i got him to tell me that i do qualify for a k pouch. tomorrow should be a confirmation, or not, of that assessment, and if so when the surgery can be scheduled.
my gi doc at home has been very helpful and supportive. for one, he gave me the article that i posted in our korner. initially he said the k pouch has too many complications, but since then he has been at some conferences, inquired about them, and is now more receptive. it sounds as if some hospital systems don't do them, and hence don't like them, while others make a point of perfecting the surgery. probably some 'group think' going on there too. my opinion...... anyway, it is great that he is following this fairly carefully. given that he is head of a large clinic it isn't like he has extra time,but he somehow makes the time.

will report back tomorrow! thanks all, janet

hi again,

just back from meeting dr. dietz and his nurse--scheduled surgery for friday the 13th, of november.  it was his earliest appointment.  says its a seven day hospital stay, then back after a month.  will talk to my doc at home and make final final decision.  biggest concern is pouchitis, of which i've had since the get go.  thanks for all of the info on this site--much of which i've read more than once--i was able to follow all that he said and ask questions.  jh

 

Sharon

did you read my news re potential Kpouch?  Am always reading your responses so looking out for advice, if you have any. Things going welol with your pt?  On that I've got lots of experience!  Jh

Hi Janet,

Wooohooo!

That is good news (in as much as getting a date to have someone take a stroll through your guts and knit them into a sweater can be good news!)...are you happy about it?

How does the news make you feel?

Happy? Excited? Terrified? unsure? Impatient?

All of the above?

For me it was a relief every time that I managed to get a surgeon to move forward towards a treatment or surgery (I wrote 'cure' but erased it...we are never really cured but maintain a stutus quo with our bodies and new plumbing)...

This could be a great oppertunity for you and your pouch...not sure if your surgeon will try to make a k pouch out of your pre-existing j pouch or if he intends to make a whole, brand new k pouch for you but either way, it could be a new start to a new life.

I am reticient to give some 'solid' advice and say...go for it. What I say is that you know what you have, how you are handling it (not great), what your health situation is presently (not great) and how you feel about the future if you do nothing (crapy)...

This is a Big surgery...don't fool yourself...you will hate me if I say that it is a cake-walk, because it isn't...it is still major abdominal surgery with the ever-present possibility of ileus, post op complications, infections etc...the valve is delicate, dangerously easy to fudge and needs babying...a lot...so no brisk movements, no yanking the darn tube out etc...no getting impatient. This is it.

(I am being the devil's advocate here...Sorry...I don't want to be a downer...but this is rough surgery)

If you chose to do it then get ready...You will not be lifting, pushing, pulling, draging, hanging, reaching up, yanking etc anything from surgery til around Easter. (no joke...the older we get, the harder it is to heal and the more time we need to give ourselves to heal properly)

No munching on huge bowls of salad for a while either...or other high-roughage foods.

Get your home prepared, your friends and family on speed-dial along with your pharmacist and book off of work for 6-8 weeks (no shoveling snow either!).

I am thrilled for you and the possibility of you getting a new start but think it through...

By the way, Nov 13th is my lucky day...(the 13th in general and Nov specifically...PM me if you want to know why)...

Let me know what I can do and how I can help if at all.

Congrats

Sharon

 

hi

thanks so much for your reply and insights--that's the word, not advice!!!

just got in from cleveland trip and am exhausted.  will write tomorrow, but thanks, thanks, thanks  janet

Hi JLH,

Looks like we will be in CC together.  First stage J-Pouch surgery is set for Nov 11th.  Prayers and thoughts are with you as we travel this together.

 

great news!  are you from the cleveland area?  if not, from where.  keep me posted and perhaps we can spend some time recuperating together.  i'm coming from boston so will not be having visitors, and if i understand correctly we can't bring any electronic devices so no internet!!!  or am i wrong.  hope so.  best, janet

sharon

still exhausted from the brief trip; this is more a product of my chronic anemia than the gi problems.  ok, throw in some emotional stress too.  i have the surgery date, but still need to consult with my gi doc re the possibility of pouchitis reoccurring.  as it stands with this doc, the j pouch is too damaged so it can't be use for the k.  if the k fails, then i'm stuck with a very short intestine for the bag option.  is it too short i questioned?  no, but something to weigh in when making my final decision.  it is the only thing that is holding me back at this point.  i know others say they take a short course of antibiotics if they get a pouchitis flare, but for the most part i'm allergic or resistant to antibiotics.  like most folks on this site, it's complicated.  to answer your question as to how i feel, well i'm second guessing my decision, although i know i'll go through with the k pouch.  i'm also nervous as a friend recently died from surgery that was suppose to be routine.  and i'm not looking forward to traveling to cleveland where i don't know anybody, and am worried as how i'm going to get home.  good news is spirit airlines flies direct and RT tix is 85$.  at least until one adds in luggage.

 

the doc said it's a seven day hospital stay and once back home walking is ok, stairs are ok--i've got a 5 story town house so am up and down all day long--but just don't lift anything over 20-25#.  in 2-3 months i can have my shoulder replacement (of the failed replacement, as i said we are all complicated and next week i find out more about back surgery).  and once all is healed i can ski and sail.  the post-op activity sounds different than what you have written on the site.  i'll do my best to slow down.  had forgotten about not shoveling snow!!  damn, i like to do that. 

 

i'm going to be so very careful about the value post-op and make certain it has healed perfectly.   i've had too many medical complications and can't afford one more.

 

thanks for your support and info.  it means a lot to me.

 

and yes, why is friday the 13th lucky for you?  peace, janet

 

btw, i asked about the 70% re-op rate within the first year, which is cited in his article--posted in our korner.  that % has gone way down in recent years, although he didn't know the %.  that's very good news.  

 

 

Ok, first off, do not worry too much (that does not mean not to worry at all) about the short gut syndrom...according to Dr Cohen, my k pouch surgeon (been doing them since 1977ish and learned directly from Prof Kock), you still have more than enough...When the non-stop k pouch complications hit me he told me that even if he needed to remove my pouch he would still have enough gut to rebuild another one without any difficulty...so technically you are fine...just don't go throwing them in the trash weekly

Yes, we are all complication prone it appears...then again, if we were not we would not be posting on this site so much!

You will probably second guess yourself right into the O.R....parr for the course.

Ok, for the 1st week back from the C.C. you may wish to have things set up downstairs on a fold out bed or sofa...climbing 5 flights even in the begining is not the best thing to be doing...or at least on the 2nd floor...

NO shoveling snow this winter...not unless there is a snowfall in April!!!!!! No joke...go pay some 15yr old kid with acne and a serious need for pocket money...you are not going to go overborad this year...wait til you are healthy and then you can shovel the whole street...ditto for doing windows on a ladder, climbing onto the roof to clean the gutters or painting the ceilings! NO

Give yourself 3 months of nothing heavier than a bottle of milk and a bag of cookies...you can dust (not under the bed!) or pass a swiffer but no heavy vacuming (the pushing/pulling movement, especially on carpet is a killer on the abdomen post op) and step ladder and tippy-toes are out for a while so your carrer as a ballet dancer is on hold too.

I hit the stair master 6 weeks to the day post op...that was how I got my 1st peri-stomal hernia (that started a whole new series of 8 major k pouch related surgeries and cost me my apartment!) and popped my stoma right out of my abdomen (it is called an ex-vagination of the stoma...it hung right out of my belly...scared me nearly to death the 1st time!)...I could have waited an extra couple of weeks to get my waistline back...thanks to that stupidity it is gone for good!

So, please...like yourself for a while. Be kind and treat your body and belly like a newborn baby that needs lots of love and attention.

ps. the 13th is the day that everything good ever happened (the 14th was the bad stuff) and Nov because it is the day that my favorite people in my life were born...

Sharon

ok, i'll follow your orders as i have a tendency to be oblivious to pain and forge ahead just to get something done.  i'm fortunate that the woman who cleans for me will be able to come in on a daily basis.  so too the carpenter to help move stuff or anything heavy.  i'd be happy to stay in a rehab place for a week after the surgery, especially since i've read that it is usually a 10-14 day stay and this doc is saying 7 days.  for that extra week i would absolutely need my electronic devices.  have list of questions for them, and will call next week.

 

am very fortunate to have a friend--a sort of relative, but not by blood--who prays for me every day.  although i am buddhist, i think her prayers make a difference.  some friends will stop by and bring some food.  but the cat?  ha!  peace, janet