Hoping to get K-Pouch, Need Advice

 Wow! I can't believe what you've gone through.  I can imagine some of the extent of frustration, as I too have had medical errors,  but not to the extent that you have. I just got notice of your posting and do wish to respond in a thoughtful manner, especially because I both have a K pouch and live in Boston. However, I'm about to go to sleep.   Here's a bit of information, and please respond back to me with more questions

I got my K pouch in Cleveland  last November as none of my Boston doctors recommended it – – actually dr nagle at BI was willing to do the surgery, but she had only done one other  and that was during residency.  The reason for getting the K was because my J pouch had failed, along with other GI problems.  I'm very happy with it, and I do think my regular G.I. doctor has come around to realizing that people with failed J pouches can benefit with a K.  I'm about to switch to Dr Kirin, in NYC, in order to cut down on travel to Cleveland.

prior to getting approved for the K I did need a specific test,  of which I can't think of the name right now. CT scan?.  I would think you could get that assessment done here in Boston, and I suggest Dr Nagle or Dr. Korzenik at Brigham and women.

 No, I've never heard of anybody with two stomas. That would be quite phenomenal so I say go for it!   Janet

Hi,

I currently have an ileostomy with a diverted J pouch. I also follow an ostomy group on Inspire and there are some people on there that have 2 stomas: a urostomy and ileostomy or colostomy. I think some of them had cancer and suffered from radiation damage resulting in the 2 stomas. Life can be rough but you are definitely not the only two stoma case! Good luck getting info on the K!!

Lori

My dad's  best friend had two stomas, however both were bowel  related. He had continual obstructions  after first colostomy resulting in the second ostomy. I'm so sorry you have endured all of this from such a young age.  I believe there are good surgeons at mass general hospital Dr Becker is there I think. He has done numerous Jpouch surgeries, however he is getting on in age and did use a bit of a different approach with a longer tectal cuff and A mucosectony I believe. I have a friend who had him do his Jpouch and he is doing awesome.  He may be a great resource for a kpouch surgeon In your area and he is a kind, gentle man and a very good surgeon as well.  

i had contacted backer's office re k pouch, several times, and never got a return call.  on final call the assistant said she didn't think he did k pouches.  believe me i tried to find somebody in boston with experience.  the k is 'out of fashion'.  except for those of us with failed systems.....

dr bauer, in nyc, dosen't take all insurances.  actually, wouldn't have gone to him even if he did.  dr. kirin, now in nyc but previously at cleveland clinic, does take insurance.

i do think you could get a good eval in boston and then select an out of town surgeon with experience.  

i had been in hospital for nine days and then went to a friend's house for rehab.  wish i had stayed in cleveland for rehab as the traveling was tough on me.  then again i am 68, not 29!!  also, my gi doc said: get in shape.  i was, but ramped up exercise and the such.  and he was so right.  it is a tough surgery and the k takes some getting used to.  the first four weeks you'll have an external bag and need to irrigate every 2-3 hours, including during the night.  the need to irrigate continues for another 4-6 weeks, after the external stuff comes out.  but, it is worth it.  well worth it.  keep us posted, and please ask more questions  .janet

sorry, that's backer's office--

the correction won't let it through   really, becker's office

Hi there-I empathize with your situation and all that you have gone through. I truly believe you will find relief just by asking questions on this forum and taking any action for your quality of life! I too had UC and a failed j-pouch. I wanted the K-pouch since learning about it in 2012. Although I highly recommend Cleveland Clinic and Dr. Dietz, I understand your desire to be closer to home. Dr. Dietz is one of the best surgeons for the K-pouch and with this surgery, you do want someone that is skilled. However, I agree with Janet too as Dr. Kiran in NYC is very good. I consulted with him for the K-pouch at the Cleveland Clinic before he left for NYC. I would think he is closer and a very good option for the K-pouch. In all, it is so much better than an ileostomy, but I am still learning how to take care of it as it is quite different. Diet will be even more important with the K-pouch and eating habits may be further scrutinized. But it is internal, therefore no appliances sealed to your body (with the exception of a Kleenex covering the stoma!) For me, I found many professionals and family were against this surgery because it is invasive, not common and not many people know about a K-pouch. However, if you educate yourself on this surgery and are a candidate for it, this could be the best option for you (I know it was for me as I love my K-pouch!). Use this forum as well – lots of your questions can be answered. I know not everyone that wants a K-pouch will automatically get it. In my experience Dr. Dietz and Dr. Kiran have specific criteria they want for their patients. But persevere as that is the first step in being an advocate for your health! - Kara

Thank you Janet, Lori, Jeane, and Kara for your quick and thoughtful responses!  I appreciate the advice, words of wisdom, and motivation.  I have already reached out to a couple doctors in hopes of getting a consultation and I guess I'll go from there.  

I am used to surgeries and long, painful recovery times so I am all ready to jump into this next one.  Fingers crossed I will be a candidate and find a doctor who can help me without adding more complications to my life.

Thanks again for all your support!

I'm glad to see Kara's post of her great experience with a great doc closer to you on the east coast. This kind of surgery can't be done by just anyone! Thanks to this forum and advice from it's helpful members, I can tell you I have found out first hand that the trips to Cleveland are worth it...well at least for me, as I am a broken j-poucher driving from Detroit :-) I've been all over and never been anywhere where my docs actually communicate with each other so well and so quickly...pretty good service in general so far. I've been seeing Dr.Shen for the past two years and am scheduled for a conversion to k pouch with Dr. Dietz on 5/13 so I will let you know how it goes. As I understand it, his full-time gig now is all complex repairs, re-dos, k-pouches and the like. He gets so many referrals for  patients like us, he doesn't even do primary surgeries anymore.

I hope you get a quick consult and some good information. You're an amazing person to have fought this long and hard -- I've only gone 5 years and don't know how I'd make it another year -- way to go! But I also know what you mean about the denial and sometimes living too long in a bad way because we don't feel like we have an alternative. It's hard enough just living through all of this, but your having to do it without the advice of a competent medical professional you can trust is inhumane. So I will keep you in my prayers tonight in the hopes that you will find some answers, or at the very least get some sound guidance very soon!

God bless, Jennifer

Hi Susan

I feelfor you and your medical history. ..I know the horrors of every surgery leading to failure, reds and more surgery to fix the redo. Some of us girls just have all of the luck!

I had my first stoma at age 2 following failed bowel reconstructive surgery to bring the rectum down to connect to the sphincter...6 surgeries later I had a colostomy.  They closed it a year later but my sphincter was destroyed. 

I had about a dzn surgeries to try and fix that without success including 2 graciles muscle grafts.  Colossal failures. Both physical and financial. ..we won't discuss the pain and mental anguish.

By 18 I ran out of body parts and gave into the idea of an ostomy. ..fortunately it was at the beginning of the k pouch experiment and after jumping through hoops and loops I got approved for the human trial. 

I was 13th for my surgeon. That was 37 yrs ago. It was not a smooth ride but I have gotten some great years out of it.

More recently I have had a series of near catastrophic complications that nearly cost me my pouch. Since 99 I have had about 12 more surgeries...all related...and in spite of it all I would do it again if I had to (I hope not!) 

I love my k pouch even if we sometimes require "couples therapy" ... there is a learning curve that goes with it but it is a lot less restrictive than some of the j pouches. 

If you ignore the 1st 6 weeks post op where you need to deal with the usual complications, pain and fuss (and we will all hold your hand through it ) then you get to the good part. Learning to master your pouch and intubation  (and chewing your food!)...and acquiring a new form of freedom. I live, eat and travel with no problems  ( do not count my occlusions and other problems...most people don't acqumulate complications lIke I do)

I live in Europe and fly home for surgery or have my french surgeon do my tune-ups through laporoscopy. 

So please, do fight for it if you are a good candidate...it is worth it...

Good luck

Sharon 

Thank you Jennifer for letting me know about your experience and the kind words!  Best of luck with your consultation with Dr. Dietz, please keep me posted!

Sharon, thank you for sharing your experience as well.  I'm sorry that you have also spent much of your life trying to get your health in order.  I really appreciate the encouragement!

Can any of you share how long it takes to go from consultation to actual surgery? Since I'm just starting this possible K-Pouch process I'm trying to mentally prepare myself for how much longer I may have to wait.  Also, do any of you know what doctors are looking for when they are determining whether someone is a candidate or not?

That really depends on the surgeons, how many exams and tests he requires and his availability. ..they have sufficient experience to know whether you are a good candidate or not rather quickly and then just book it once you clear it with your insurance.

Depends on the hospital as well...surgeons have teams and floors so he needs to make sure that both the bed and team are free as well.

Please start to prepare you self both mentally and physically...it may go a lot quicker than you expect or you may recieve a flat out refusal due to other factors.

I try to be ready to go and prepred to stay put but honestly no matter what, you will stress. Time to activate your support system. Make sure that your loved one know that you are going through a stressful period and that they are there for you no matter what the result.

Sharon 

I suggest that you meet with Dr. Gorfine in NYC. Please keep in mind that in many cases the first attempt to create a K pouch is not always successful. Dr. Gorfine was the only surgeon that my son had any confidence in. After two surgeries and now eight years his K pouch is still functioning. You have been through a lot and the K pouch will not be easy but for a young person it can make your life a little closer to normal.

i needed to have a CT scan of my intestines.  dreadful exam, but was required by both docs that i saw.  at a minimum it can qualify the condition of your system and if there is enough intestine (80 cm i think) to make the k pouch.  i have no idea what other criteria the docs used, but i suspect they want the patient to have good nutrition, be in good shape, not be seriously overweight or have large yo-yo weight changes, and have a good attitude.  it's a tough surgery so one needs to be in good shape before hand.  it will be a bit less surgery for you because they don't need to remove the j pouch nor give you the barbie butt.

i'm curious what docs you are seeing in boston.  you can PM me with the info if you don't want to post it.  i've been around the block, i.e. spoke with various docs about it, and might be able to help you out.

seeing dr kirin this friday!!  will report.  keep at it, janet

Susan,

I started seeing Dr. Shen two years ago to get help with my J pouch function. I was 3 years out after losing my colon to UC/toxic megacolon and having frequent bouts of Pouchitis, cuffitis, and difficulty stopping when I needed to stop and going when I needed to go. After a year of trying everything he suggested (meds & physical therapy) I got some improvement of the "itis" symptoms, and was better at stopping; but going was not only not improving, it was becoming more painful. At my follow up visit we discussed surgical options and I asked about j pouch so he referred me to Dr. Dietz. The doctors talked and then Dr, Dietz and I talked and he told me I was a good candidate for the k pouch and didn't recommend revising my j pouch or cuff.

Some of the reasons he felt I was a good candidate as I recall we're things like my J pouch problems likely steaming from pelvic floor damage more than problems with the pouch itself. Sone of the reasons I've hear from people who have not been able to have the operation stem from the pouch -- needing enough small intestine for the pouch construction, being unable to make a j or k pouch because of signs of Crohn's, one person already had a j pouch but it required such significant revision as to require too much additional small bowel. Several others said they had issues with assesses or fistulas. I think one person was upset it was suggested they lose weight first.

Positives for me were being 46, healthy weight with good physical abilities. Not that age means anything to Janet! As she knows and wrote from her first hand experience, this is going to require a lot more work than the ostomy bag initially.  It also means another big open surgery and long recovery. I've been taking notes, Janet, and thanks to you I'm feeling better prepared :-)

But Sharon also said it well given your complicated situation -- the most important questions you want answered right now need to be answered by a surgeon with knowlege of your specific medical background. Then everything else will be based on the doctors office, the hospital and their procedures and scheduling which can vary wildly. For various reasons it could be one month to one year.  I think I could have had mine done sooner once Dr. Dietz gave it the green light, but I had to take 6 months to digest it all, get a little sicker, and then make it all fit it to our family life and his surgery schedule. So I am done consulting -- I'm having the surgery next week (I can't believe I just wrote that!)

This last comment is a little more philosophical but I think it applies given your unique situation and difficult past experiences. It comes from my husband and I having worked in and around hospitals & healthcare all our careers -- him with knee, hip and spine implants and me in technology -- and now from our personal experiences with our own surgeries. Find the best surgeon getting the best results and do whatever he or she recommends. The best thing for you is whatever the surgeon operating on you is best at doing. If you're not totally comfortable with that, you may not doing the right thing or risk not being happy with your outcome.

The only thing keeping me sane right now heading into this surgery next week is that I know I need to DO something, I have the support of my loving family and I have done everything I can to put myself in the best human hands possible in Cleveland -- the rest is in God's hands.

Best wishes,

Jennifer

I agree 100% with everything that you have sais Jennifer. ..I wish you good luck and a successful surgery with a speedy recovery.

Sharon 

jennifer

wow, next week you are becoming a k poucher!!  i emphasize with your saying that you came to the realization of needing to do something.  our medical system is now driving by patient's making decisions and taking actions.  by the time you get to needing a k pouch there are too many complications and too much emotion for anybody else to sort through them but you--not your pcp, not one of your several gi docs.  i think some of this is unique to gi problems.

anyway, i wanted to explain some things that went on at cc.  first off, the bad and ugly.  i had serious  spine pain, most likely due to my position on the surgical table and pre-existing stenosis.  listen, i broke six ribs once--mountain biking in siberia with no medical care around--and this was far worse, even with the meds.  i didn't even feel any abdominal pain.  i also had a bad trip from the drugs.  by the time i calmed down--two days after surgery--i thought through what i needed.  cc has a pain management team, although that's not their name, can't recall it.  get them to your bedside if your pain isn't under control.  if your surgery is on friday make sure that you get adequate medical review over the weekend.  i didn't.  i think your husband will be there and that should help with patient advocacy.  i hope none of this happens to you.

the good.  as you are probably aware cc has an amazing art collection.  ramble through the hospital and see it all as art will help you heal (and you'll see the VIP rooms.)  also, there are concerts.  i asked for pt, for my back, and the therapist took me to the exercise room where i could use the recumbent bike.  that lifted my spirits.  and they have art therapy--workshops with crafts, which isn't exactly my cup of tea, so the therapist did a one-on-one with oil pastels.  go down the hall towards the IC unit and there is a family sitting room that has a great coffee machine that i frequented daily.  the ostomy nurses are fantastic and ask every question you can possible think of and be engaged with them.  you can call them once you are home, but always better to explain it in person and get help when needed.  in my opinion the 4 week follow up appointment is too brief of a training session to master inserting the catheter.  i learned tricks from this site!!

is your surgery on friday?  i'll be sending you healing white light all day long and through the weekend.  i'll be in nyc for my doc appointment on friday and two operas at the met and a friend's play!!  can't wait.  keep exercising up to the time of surgery, especially those core muscles.  it can only get better from here on out.

peace, janet

Best of luck, Jennifer!  I hope all goes well and will keep you in my prayers.  

Thank you all for your responses.  Reading these messages has not only been giving me hope, but keeping me sane.  I've been going crazy lately grasping at straws and I'm grateful to hear of your experiences and advice.

Janet, I had all of my UC treatments and ileostomy done at Lahey Hospital.  I was treated there because I had gone their for reconstructive surgeries prior.  My surgeon never once mentioned the K-Pouch, but basically told me I had to learn to live with my ileostomy because a J-Pouch was not possible.  Desperate, I went for a second opinion at Mass General.  I met with Dr. Bordeianou and while she agreed that a J-Pouch was not an option, she did tell me about the K-Pouch.  She, however, highly discouraged me from pursuing it.  I have since contacted Dr. Matthew Vrees in Rhode Island and am having a consultation with him.  I am not necessarily hoping he will perform the surgery, but am hoping for some advice or direction.  Additionally, I've reached out to Dr. Kiran in NYC.  I am having my medical records sent there as I was told to do first.  I'm hoping to make an appointment soon after.  (Though I'm already facing some insurance complications, but I'll go in debt if need be to take care of this)

JohnsDad also mentioned there is a Dr. Gorfine in New York so I will be looking into that as well.  Thank you!

C Susan..please update us on your visit with Dr. Kiran. I may make a visit here also as I would be inteerested in the k pouch if II am a candidate and also the fact that they do a lot of jpouch salvage surgery.  I am wondering does he take insurance as a lot of the NY docs  do not. 

Hi Jeane, I will definitely keep you updated with any visit to Dr. Kiran.  I was told by his assistant that he does take insurance.  Unfortunately for me I have an HMO plan and not a PPO so at this time I am only covered to see doctors in New England.  I am discussing this with my company's HR department in hopes to works something out.  Regardless, I will still pursue a visit with him if he would like to move forward after reviewing my medical history.

Csusan   

I had posted an article on the k pouch korner, which is too long to post again here. Try this link

https://www.j-pouch.org/topic/2...e-of-k-pouch-for-ibd

If that doesn't work then go to the second page on the site. I think you'll find some of the information helpful.  FYI, I asked what the failure rate was in the first year and it is about 10%.  In the article  the rate is much much higher because they used stats going back many years when the success rate was not good.

One reason why I had a failed J pouch was because of the treatment given to me by the same doctor at MGH  that told you not to get the K .  I should've taken her to the ethics board, but it's better to move on and not get dragged down by those sorts of issues.  Yes? I have no experience with the doctors at Lahey, although I've heard people reference the woman doctor there and speak of her quite highly.  

 Keep us posted on what the doctor in Rhode Island says. When is your visit? If you want to stay in Boston I think that Dr Nagle  at B I DMC  would be good. She was a resident under Dr. Bauer, who is one of the NYC doctors who does K pouches. She has done a K pouch or two ,  which I don't think is enough to qualify for her to do yours yours, but she certainly would know what test to give you and could evaluate whether you could get one. I found her to be very helpful, thoughtful and considerate.  She reached out to me when I was tough place and has followed me through  even though she has not  done surgery on me .  

Boston doctors are very adverse to the K. I think it's because the j was considered the improved option, and they don't go back to prior surgeries or techniques. What they don't realize is that is an option for those of us for which J doesn't work or the J has failed.   Dr Nagle is a lone exception to that  archaic thinking, 

JenJen and C. Susan- my thoughts are with you both as you start a new endeavor for your K-pouches. It sounds like you are both on track with good surgeons. Use this forum for any questions as I have found a wealth of knowledge. The recovery from this surgery is difficult (those core muscles will be sore), but knowing the outcome will keep you motivated. The hardest part I have right now is eating the right foods. I wasn’t as worried having an ostomy, but with the K-pouch, everything you put in your mouth will matter. The K-pouch is a commitment – always keep in mind you should take extra care with it. I am still learning six months after my surgery and will continue to do so – but it is so worth it! As everyone else mentioned, keep us posted on your progress! All the best to you both-