Hi, everyone!

I am 24 years old and over the last 2 years I have undergone 4 surgeries due to ulcerative colitis. I had a temporary ileostomy created in August 2016, followed by my j-pouch creation/ loop ileostomy surgery in March 2017, my reversal in May 2017, and then my j-pouch/ anus/ rectum removal in September 2017 after my j-pouch failed. 

Accepting that I now have a permanent ileostomy has been challenging, but it has allowed me to become healthier than I have been in the previous 2 years.  

Recently, I have been researching the option for a k-pouch or BCIR for a chance to live bag-free and I am looking for positives, negatives, and everything inbetween. I realize that both the k-pouch and BCIR can come with their own complications, just as there can be complications with a j-pouch (been there, done that) or an ostomy, and that everyone is different. 

I have been reading as much as possible, but I am not sure where to even start when it comes to the idea of a k-pouch or BCIR. If anyone is willing to share their experiences, recommendations, or advice, I am open to hearing the good and the bad. Ideally, I would like to become even stronger before considering another surgery like this.

 

Thank you so much in advance! -Kristen

Original Post

Hi Kristen,

I have had a BCIR for 5 years following the failure of my J pouch (which lasted for 30 years).  There was no doubt whatsoever that I did not want to get a permanent ileostomy.. Like you, I did my research on the K pouch and BCIR and was fully aware of the complications that some people have had with these procedures.  This did not discourage me from getting a BCIR since I learned that most complications can be successfully corrected and that only about 6 percent end up needing their pouch removed and going to an ileostomy.

During the first 3 months following surgery, I had pouchitis and some leakage of pouch contents.  This was attributed to the pouch expanding to its full size and the valve “maturing”.  After that, I have had no problems and rarely am aware that I have an internal pouch.  I am able to eat almost anything I want, being sure to chew it well. I can do any physical or sporting activity I want and experience intimacy with no embarrassment or limitations. I can go up to 8-12 hours between intubations which means I do not have to be concerned where the nearest restroom is located.  I typically empty my pouch 4-5 times every 24 hours and can get a full night’s sleep. The stoma is located below the belt line, 2-3 inches below a traditional ileostomy stoma, is button hole in size and covered with a small absorbent dressing.  It is not visible under the tightest of clothing. My supply costs are under $200 per year and I carry my small catheter in my pocket or a small case when I am away from home.

The BCIR program where I had my surgery has a website (www.bcir.com) where you can lots of information about the procedure and request an information packet that has a list of about 300 people with BCIR’s that you can contact about their experiences.  Please feel free to send me a PM with any questions that you have. If you provide me with your phone number, I can call you back.

Bill

I had a Koch Pouch that lasted for about 18 years and then I had to find a new Surgeon since mine had passed away.  I had a Dr. Schiller in California do my surgery for a BCIR because just redoing the valve seemed to not be enough and now it has been about 3 years.  I can say that I have had many experiences over the years and to put this into perspective I did have an illeostomy for nearly 10 years before the Koch Pouch and had nearly died before that.  I was under 100 pounds and my existence seems to still surprise some people.  Over the last few years the biggest challenge for me was not having any moral support since I had lost my Mother right before that surgery in California.  At that point it was like suddenly I was on this planet alone and not much has changed in these last years except learning to be even more independent though I think crawling on hands and knees from a taxi to your front door is a bit ridiculous.  I bet you have many in your world that are understanding and that is a great and wonderful thing to cherish.  Even though I had some issues with the Koch Pouch I think I would never want to go back to having a external pouch since I am very used to living the way I do.  The dietary limits and other things like scars are nothing to me and  I only wish that their was more surgeons and also more support and recognition from others in the Medical field.   I have done all kinds of things like traveling for months into Budapest and Skopje and other places where I went Scuba Diving and had no complications from my Koch Pouch or the BCIR that I have now.  If there are any specific questions on healing or things like that I am more than happy to share what I can.  I wish you all the very best.

My BCIR surgery was done by Dr. Ernest Rehnke at Palms of Pasadena Hospital in St Petersburg, FL. He is an excellent surgeon and the nursing care is top notch.  I had no problems with the 12 hour trip home to northern Wisconsin and attended a 5 hour outdoor estate auction the weekend after returning home.  Within three months, I was able to do almost anything I wanted.  I have had excellent results with my BCIR and the quality of life it has given me.  Please feel free to send me a PM with any questions you have.

Hi Kristin 

Happy 4th💥🇺🇸

Have read this several times and really feel for you! Just need to put in my 2 cents. You are very young.

i am not sure what the others have left of their bowel, but I have had 2 other j pouches and total colon removed, rectum and anus. I had complications with the ostomy.

K pouch for not quite a year. I have to intubation at least 8 times a day and it awakes me every night 2/3 times.

I have seen many experts and do not want go into all details now , but it’s been quite difficult to carry on , finding places to empty and my life is very different as to what I can eat and what I can do now.

If I could I would have the external bag again.

I don’t want to be negative as I am very grateful to be alive, but wouldn’t want you to do something uninformed about what can happen and you are young and a bag is really not so bad.

If you want to talk to me, you can private message your number.

I appreciate all support but don’t want anyone mad at me as these are tremendous people here. I have followed since 2006.

J

 

 

 

 

j—I think it’s good to get as much information– – Good and bad – –  about the k pouch on this site as we can tolerate writing.  

 you are right in saying there are some advantages to the eternal bag versus the k,  primarily ease of empting and especially when away from home .  

I had the extertal for a year, then the J pouch for many problematic years and the k pouch for the better part of three  years. I’ve needed one hernia surgery and will probably face another in the near future. I’m not especially happy with some of my food limitations.  That said I will fight to keep the k pouch.   My quality of life is much better, but quality of life is indeed a personal choice.

Prior to making my decision I read every post on the K pouch Korner.  probably read Sharon’s posts  several times as she is extremely knowledgeable and detailed.   I asked questions, members provided answers, I consulted with several doctors, read an excellent article which I posted on the site  and felt that in the end I made an informed decision. You are young and this is very tough for you.  I am so sorry. Whatever we can do to help out with information and support we will do. We are family. Keep us posted please. 

BTW, where are you located? Janet

Jan, I am so sorry to learn of all the problems you are having with your K pouch.  I cannot imagine anyone in this group becoming mad at you for what you have posted.  We are all here to support each other in good and difficult times. I am a strong believer in researching my options, especially when making a decision on a medical procedure that cannot be reversed. A person should weigh the advantages and risks for each option.  I also believe in trying to make the best of a procedure that turned out to have problems, as I did for 30 years with a J pouch.  Since everyone’s circumstances are different, there is no right answer, only the one that is best for you.

I am a strong advocate for the K pouch and BCIR procedures and am willing to accept the risk of getting complications that would require additional surgery or treatment. Not everyone is in that position or mindset.  In the event that everything attempted to save my pouch failed, I know that I could always revert to an ileostomy.  Many people have them with good results.  I have read on other posts of people who have used a Foley catheter connected to a leg bag for certain pouch problems, but this would require a fairly liquid output.  Have you considered it?

Bill

I've had my k pouch since 2011 and I've had no problems. When I got the K pouch I was in the hospital for a month and I was not given any food by mouth. Since I am 80 miles from my DR I think he kept me in there instead of the plan we discussed of renting a hotel room close by. When I was discharged I was 80 lbs. But after all that I pretty much eat what I want now. The biggest problem I have is getting a ride to the doctors since I don't like driving long distances in pretty much unfamiliar territory. (I only see him once per yr.) 

I had the bag and didn't like it. It leaked a few times and I think I was sensitive to the glue. The glue itself wasn't the problem but I think the glue combined with bodily fluids was irritating. And since I couldn't have the bag removed for any length of time that made the irritation worse. So in my case the K pouch was a blessing.

Everyone's different and they deal with things differently. I still have some trepidations using public restrooms. But the first time I did and was cleaning out the catheter in the sink, the women next to me looked over and then continued to wash her hands then left. I don't think she really 'knew' what I was washing out or the implications of what I was doing. A lot of the times I was in there with no one else at the sink. But I think I figured out ways to clean the catheter more in the stall so I won't be at the sink with the catheter for long or at all. I have not had the opportunity of testing this procedure so I'm hoping it will work. 

I also use to be a member of Norman Vincent Peale's power of positive thinking. I know that's not 100% effective but I think it helps in some instances. And this coming from me a person who has anxiety over much minor things a lot (including driving long distances). But this decision I never had any anxiety about.

I hope this information helps. So take a deep breath. Make pros and cons lists if needed/possible. Go over all of this information and I'm sure you'll make a great decision. The best of luck to you. I hope you have a safe and happy 4th and a brilliant week.  Mary

Bill, thank you for the kind words.

i have tried what you suggested with the direct drainage for I can’t intubate, I have a dehydration and nutrition issue.

Am currently being looked at for bowel lengthening ? Procedure. Anyone familiar?

Mary, positive thinking and humor goes a long way, use it daily!

And know what you mean about rinsing in public restrooms, actually had times that people yelled at me🤬 Darn em 

A syringe of water in the toilet helps ! carry a large one with me and fill on the way in.Kinda goofy looking, get some weird looks, who cares.🇺🇸💥

 

 

 

 

 

 

 

WillLive4ever-

Thank you so much for sharing your experience! It is wonderful to hear that you have been able to travel and lead a pretty normal life with your k-pouch/ BCIR (besides diet restrictions). There are undoubtedly going to be hiccups along the way, but what matters is that you have been able to adjust. 

Again, thank you so much for your insight and sharing your story. 

J- 

I really appreciate your honesty and willingness to share your negative experience! I know that not everyone has a positive experience with these and I welcome insight into the problems that can arise. I remember going into my j-pouch surgeries, I was optimistic, but knew that they did not work for everyone. Mind ended up causing tremendous problems and left me nearly 78 pounds before I had it removed for my permanent ileostomy. I don't regret trying, but I would be much further along in my recovery right now if I had not opted for it. 

I do worry about similar problems arising with a k-pouch/ BCIR. My ileostomy is working wonderfully right now- I am just having trouble adjusting mentally and emotionally to it. I worry that I would be giving up something predictable for something unpredictable and potentially problematic. But knowing there is another option out there for me- I find it hard not to try. 

Again, thank you so much for sharing your experience. Your experience highlights the not-so-successful side of these surgeries and that is something very important for me to consider. I hope you are doing well. -Kristen

Mary-

I'm glad you mentioned your experience in public restrooms with the catheter! That was one of my biggest concerns as it is not as easy as simply emptying your bag into the toilet. 

Where did you have your surgery done? A month seems like such a long time, but I absolutely see the reasoning behind your doctor wanting to keep you until he was absolutely sure that you would be OK going home. 

I am happy to hear that you have had no problems since your surgery! How wonderful. I will absolutely be making a pros/ cons list, as that was very helpful in making my decision to opt for the j-pouch last year. Although unsuccessful, I am glad that I at least gave it a try. I believe in following your instincts, so I will be not only weighing the pros and cons, but really tuning into what I feel is right. 

Thanks again! - Kristen

Thank you so incredibly much to everyone for your feedback, advice, and insight. I cannot even describe how much I appreciate you taking time out of your day to share your experiences with me. 

I am curious about your recoveries after returning home. How long until you were back to work? How long until you started feeling "normal" again? How did your diet progress? 

Janet-

Thanks so much for you information. I am currently in the research stage! I have been connecting with as many patients as possible, researching doctors, and more. It can be quiet overwhelming, but like you, I want to be as knowledgeable and prepared as possible. I am also taking care to not only seek the good experiences, but the bad as well because it is only responsible to know going into something like this that it may work, but it also may not. I have to consider how a surgery like this will affect my current work status and the progress I have made in my health. 

I am located in northcentral West Virginia. I know many patients have had their surgeries done at Palms of Pasadena Hospital in Florida, which is a 14 hour drive for me. That is definitely something that I am taking into consideration moving forward as well. Where was your surgery done and who was your surgeon? 

I truly appreciate your feedback. This community has been absolutely incredible in providing honest and extremely helpful information. - Kristen

Kristen, 

I am from Cleveland area and even with my issues, can’t say enough good about the care I have had. You may want to have a consult up here, pretty close to you.

Ihave had the best Docs out there over the years. It’s my body🤨that just is hard to please!

We continent pouch folks are just in the minority now. The majority of medical folks I run into have never seen this, only the j pouch. We have to depend on each other for support and as you see we are all different.

So many troopers out there, Sharon and Bill and lots of posts from Janet.

Wishing you a great future and hope to get lots of feedback for you 

Jan

 

Dr Rolando Rolandelli  did my operation at Morristown Medical Center in Morristown, New Jersey. After I was discharged I had a temporary drainage bag for a couple of weeks. I went back to Dr a couple weeks later for him to remove that so I suppose I was out of work for I guess about 2 months. I then had limited duties/hours for a few weeks. That was in 2011 so I suppose I was back full time in about 3 months (that is if my memory is working). But everyone heals differently and I was older when all this happened. I wasn't in the best of health to begin with. 

After the Dr removed the drainage bag, he said I should have a lots of milkshakes to put the weight back on (I was 80 lbs). So at that time I was able to eat normally and I do remember that I was told to chew the food thoroughly. I've had a couple of occasions where things like corn blocked the catheter. After I removed the blockage and reinserted the catheter, things went smoothly after that. So I try to stay away from things I think might block the catheter (or anything else). I was given an after care document with instructions on care of catheter, foods to avoid, and general information. 

I use a disposable enema bottle to flush out the K pouch and then rinse out the catheter. They are more readily available and I think cheaper than 60 cc syringes. (I could get one at the dollar tree. And got two on sale cheaper that that at the supermarket.) Then I could clean the catheter better when I got home.  I think a bottle would cause less attention than a 60 cc syringe. On one occasion I had 2 enema bottles that I filled at the sink.  That caused a few more glances. I suppose I have to find a bottle that does not say enema on it. 

I'm so sorry that people yelled at you . I'm surprised that they even had a clue what was going on

If you would like the after care document I have, I can send it to you. PM me if you'd like to glance over it or want it. The best of luck to you. Have a beautiful day. 

kim-- dr dietz did my surgery when he was at cleveland clinic.  i was very pleased with him and my care there.  super ostomy nurses.  he is now at university hospital, also in cleveland.  i would highly recommend you get a consult from him to help line up the pros and cons.  i did and he was very helpful.  also, somewhere on this site i posted an article he had co-authored.  

i'm in boston and couldn't get a doc to do the surgery, much less encourage me.  one has since come around and has suggested the option to other patients.

at times i get frustrated with the k pouch, mostly over my food choices and a lingering hernia (i think that's what it is, going to doc soon.)   it takes more time out of my day, but that might be me and my habits--again my food choices, which tend towards thick output.  traveling in countries w squatter toilets adds extra challenges, but provides funny memories about them!  at the end of the day, so to speak, i come down on favoring the k over external bag. 

you can pm me if you have specific questions, but feel free to ask more on site.  i think the more info we have on the site the better off our community is.  keep us posted please,   

i too use an enema bottle when outside the house.  for those uncomfortable filling it up in public you could try filling a water bottle and then filling the enema bottle when in the stall.  once i worked out a routine for using a public bathroom the frustration went away.  as for washing out the catheter i figure nobody knows what it is used for and i've never been asked.  i also think that the more comfortable i am with what i'm doing then the less likely people will notice.

janet

Janet 

I appreciate you saying we should air the issues in public, Thank you. Lots of J pouchers, I had 2, but really not many .k’ers.

My output is very thick and takes forever to empty and has limited my options on eating. I also have IBS , rats.so have bloated belly with everything.

But the humor of the day is thinking of you using squatting toilets !! We have spent time in Asia and Mid East and I really can’t imagine don’t lading on my fanny. Thank you for this thought.😂

Dr Dietz did my K also. Great Dr .Thank God for those still doing this and promoting it.

Would love to have someone in the CLE area to be in touch with??

Jan

 

 

 

 

jan--by public airing i mean on this site . it is good to bring up both improved quality of life issues, but also the probs w a k.  when eating out i just say i have a problematic gi system as to why i don't eat certain foods.  and i bite my tongue when friends, who know what i've gone through, complain about how lucky i am to eat butter when they can't eat this or that.  nobody understands until they have gone through something or when they have had chronic pain, and it's not possible to explain it.  anyway, enough on that....

sorry, but i live in boston!  so we'll stay in touch via cyber.  was yours at cc or university?

might your bloated belly be SIBO?  if so, that's treatable w diet, albeit a tough one.  i had it w the j, but not now.  i also irrigate w almost every evacuation to lessen the chance for overgrowth.  as for thick output a nurse suggested to use benefiber.  i tried it again yesterday, with a homemade veggie smoothie and i think it only marginally helped.  what works better is a 34 fr in which i've increased the hole size.  and of course, lots of irrigation.  can be frustrating and time consuming and i should be more careful w food......  i try.  j

Janet,

I am seeing Dr Dietz next month and will ask him about the 34 Fr. That could be an answer. I really am very careful on my restrictions. But it happens anyway🤷‍♀️,

Really have to work at taking in fluids, even there the night.

I tell people I prefer to not eat a healthy diet, they just don’t know how to respond to me then and ends that conversation.Close friends try to get it.

I am long time patient of CC, but had K at UH , my J’s were at CC and NYU.

GI’s At CC  this due to the changes in staff at CC. 

SIBO is in the mix, but not always, Bad gut syndrome!  Self diagnose 

Good weekend to all😎

 

 

 

Kristen:

I have had a K pouch for almost 36 years. I have a 27 year old daughter and no pouch complications during my pregnancy. I work full time, travel, work out at Orange Theory  Fitness, and spend many hours at our local fire station volunteering as an Emergency Medical Technician. Recently, after 35 years, I did have a K pouch revision due to valve issues. There’s a thread on this forum with “NUVAL” in the title with more info.  It was slightly challenging due to some complications, but I am back on track now. It was worth everything I had to do to keep the K pouch. I’m so glad I found a great surgeon, Dr. Jean Ashburn. She is very skilled at the K pouch surgery and is genuinely a very nice person who cares about her patient’s.  She was formerly at the Cleveland Clinic, which is where I initially saw her last year, but about 9 months ago she moved back to where she is from in Winston-Salem, NC. I am located in Northern Virginia and it’s an easy 5 hour drive to her office at Wake Forest Baptist Medical Center. And fortunately, she is “in network” for my Blue Cross- Blue Shield health insurance. My insurance is actually out of West VA because the parent company of my employer is in West VA. 

WillLive4ever posted:

I had a Koch Pouch that lasted for about 18 years and then I had to find a new Surgeon since mine had passed away.  I had a Dr. Schiller in California do my surgery for a BCIR because just redoing the valve seemed to not be enough and now it has been about 3 years.  I can say that I have had many experiences over the years and to put this into perspective I did have an illeostomy for nearly 10 years before the Koch Pouch and had nearly died before that.  I was under 100 pounds and my existence seems to still surprise some people.  Over the last few years the biggest challenge for me was not having any moral support since I had lost my Mother right before that surgery in California.  At that point it was like suddenly I was on this planet alone and not much has changed in these last years except learning to be even more independent though I think crawling on hands and knees from a taxi to your front door is a bit ridiculous.  I bet you have many in your world that are understanding and that is a great and wonderful thing to cherish.  Even though I had some issues with the Koch Pouch I think I would never want to go back to having a external pouch since I am very used to living the way I do.  The dietary limits and other things like scars are nothing to me and  I only wish that their was more surgeons and also more support and recognition from others in the Medical field.   I have done all kinds of things like traveling for months into Budapest and Skopje and other places where I went Scuba Diving and had no complications from my Koch Pouch or the BCIR that I have now.  If there are any specific questions on healing or things like that I am more than happy to share what I can.  I wish you all the very best.

since you have had a koch pouch and BCIR, can you tell me how they are different.  is the BCIR preferred over the Koch?

pammieskrh posted:

since you have had a koch pouch and BCIR, can you tell me how they are different.  is the BCIR preferred over the Koch?

Sorry I have not been on the site and obviously missed this by a few months.  In the comparison I have to say that it is pretty hard to compare as in when i had the K pouch I had been suffering from the skin abrasions due to not being compatible with the convatec or the hollister type materials so I was simply elated in A: surviving such a huge life change and suddenly after 10 years wearing the appliance,  being free to where clothes in a more easy fashion and of course not having the constant rashes.  It was not till the end (after 15+ years) and I believe if my original surgeon had been alive he would have done the revision sooner and before I became in the shape I had become.. and at 18 years I needed that revision but had no qualified physician to tell me so. OK> so just skip to the "BCIR",  I obviously did find support and though it seemed to be tough I was finally taken care of and received my BCIR.  I will tell you today that cosmetically I like how this turned out in the placement ( over to the side instead of right below my belly button,  and my K pouch opening you could see the skin was different and I was very careful around it... moreso than one might need to be.  On the BCIR it is more of a straight line but it is nearly invisible.  Now there is a difference that for me is kind of a toss up... and it is like this. for my K Pouch it would sometimes allow some air to pass thru it though was still considered to be sealed as there was no fluid leaking. (towards that last few years that became an issue) But as for the BCIR it will not allow anything to pass through the gate. It of course can produce a small amount of fluid but that is why we where a small bandage over that area.  i actually use what I think others do> that is a maxi pad that is cut into a smaller piece.  i think I can get 6 pieces or more from one pad. and I use a white silk tape to keep it in place. to be totally honest if I was in a situation like scuba diving I would either use a small waterproof tape or just none at all. it is that tight. So what is the other side of that??? Well, if you do have any gas or tend to eat foods that do that to you it can be quite uncomfortable and I really had no idea the other one (K Pouch) was actually making that not so much of an issue.  So as you can see I would truly have to say that they both served and serve me very well and I am grateful. in my own experience i believe I would keep the BCIR now and I like the idea of how it is designed. Dr.Sullivan had his own twist on the K pouch as do other Surgeons so it is not surprising that others may not experience things quite the same.  So if I had to pick I would say the BCIR.. But I would also be happy,  like I was, when they converted what I had (standard Ileostomy) into the K pouch.  I have a very strong belief that you understand completely what it will entail and it does take time to adjust in either of these choices as they are basically creating a new area that will need to stretch and allowed to heal while you are still living.... you know.. "real time".  I would not have ever gone back to the ileostomy though again I have to say that it was the step ( even though I think it lasted too long)  in saving my life.  I would not have survived if they had not removed my large intestine.  I was not aware I was NOT getting my K Pouch till the day of surgery. I was there and they were drawing on my abdomen with a marker and then placing  ostomy bag by it and I said " why are you doing that?" ,  and they explained... I just started crying because I was in shock.  But it was the decision that I would not be strong enough to get a K pouch (or BCIR) at that time.. I was just the last to find out. LOL.  So I think in these situations it is all about how you communicate with your Surgeon and providers... How good you are at adjusting to and patient with yourself and the pains that you feel along the way.  I want to just say that I wish that for all the people out there that are clearly strong candidates for a K Pouch or BCIR,  that I wish so much that they realize that they have an option.  I say this because believe it or not I might as well be an alien and there is so so many medical professionals that are not informed and even misinformed about what it is to have this opportunity in life.  I have fought like hell to be alive and to be my own advocate.  I am getting closer to being 60 (58) but all this started before I was barely 20.   So this is in my blood and when I can I help others though this last 10 years that has been harder because I live so far away from anyone that might need that support or the Hospitals where these miracles are performed.  I hope this long winded early morning reply helps somehow and maybe even shine some light or raise other important questions.  

 

Kim S posted:

Very good explanation. After two revision attempts on my almost 37 year old K pouch in the last two years, I am traveling to Florida for a consultation next week with Dr. Rehnke to discuss the BCIR. Assessing all my options. 

I would seriously like to hear anything you feel comfortable sharing.  I have not met Dr.  Rehnke but since it seems like he and Dr. Schiller in California are the two major Surgeons I am aware of in the USA  ( East and West Coasts) I have tried to know who is active.   Please feel free to PM me if you want.  I know someone going to Florida and I have even thought about what it would be like to live there.  I am impressed that your K Pouch lasted that long.  That is twice as long as mine did!  I am sure you will be given the best advice and care.  Will you be traveling a long distance?  Either way, know you are not alone and take care.

Hello all🌝

Kim S wishing you luck with your appointment in Florida 🍀

I have had the K Almost 2 yrs, after having 2 J pouch’s. Interested to see if the BCIR can make a difference. I have a huge motility issue, now almost no fiber, no fruits or vegetables, so much gas I can barely intubate to empty. I had C-diff and a fecal transplant to deal with that, no anti -gas meds now as it may reoccur😬. Need to release the gas about 12 times a day now, 

Sooo, would it be easier with BCIR, anyone know? Look forward to hearing from those of you making that next move! Wishing you great results and amazing recovery .

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