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J to k conversion

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skn69skn69Member
Hi Guy,
I didn't have a conversion but a direct K pouch creation in 79 (there were no J pouches back then and in my case it wasn't an option)...the k pouch surgery is just as big if not bigger than a j pouch depending on how many steps and who is doing it...it cannot be done laporoscopily (sp?) because the valve itself is a delicate thing to construct and needs 'hands on' work...depending on what was/is wrong with your j pouch (sphincter problems, rectal cuff, pouchits...) they may be able to reuse the pouch or not...if so it takes a lot less time to do the surgery. I have had over a dzn sugeries related to the k pouch (from creation to various revisoins)and understand how delicate our valves can be...They are the weak link in the system...it doesn't matter whether it is a K pouch or a BCIR they both use valves...other than that the pouches are identical. The traditional k pouch valve is different from the BCIR only because they use a 'living collar' or piece of intestine that they wrap around the base of the valve to reinforce it...some k pouch surgeons use the exact same techinique for recalcitrant valves that have had more than 1 slippage...there is no proof that either method is better than the other it is mostly a question of surgeon, hospital and 'hotelery service' (some hospitals have better hotel service:food, rooms, beds etc)...in the long run it is up to you to decide which surgeon you feel best with, which hospital is most convient for you and what your insurance will cover.
This surgery, no matter what, is no cake-walk and you can expect to have 2-6 months of transition and training before you are up and running correctly and at least a full year before you are 100%...
No matter what your choice is or your decision I wish you very good luck and hope that this surgery helps you.
Sharon
R rockygMember
Just got home from conversion of illeostomy to koch pouch was up out of bed the next day and was sitting at home 5 days later.I am feeling great but everyone heals different and never had a j pouch.I believe the clevland clinic is one the best in the world for k pouches seeing that my doctor sends his staff there to be trained to deal with all ostomy related subjects.
L lynne-saMember
Before my k-pouch surgery I traveled all the way from Virginia to Florida to check out the BCIR because I know that some patients are happy with those results.
Then I traveled from Virginia all the way to the Cleveland Clinic to check out their procedure.
I was impressed by my surgeon in Cleveland, Dr. Fazio, and even more impressed by CC itself.
One never knows what can go wrong with major surgery and the fact that CC is at least 10 times as large as Palms, with world-renowned doctors in every field of medicine made my decision easy.
Palms is a pretty little hospital and the BCIR staff is experienced, but the Cleveland Clinic is world famous and if one develops a clot (as I could since I have thrombophelia), there are expert hemotologists. In fact, I had to meet with one such doctor and have some tests before my surgery.
I know the BCIR has the living collar, but now the k-pouches made at CC are also reinforced, but in a slightly different way. I think CC staples the valve to the pouch wall and then adds another strip of tissue to super reinforce the attachment.
In the almost 10 years I've had my k-pouch, I've never had ANY problem with my valve.
Good luck with your decision. I'm very happy I chose CC, so much so that when I needed gall bladder surgery a few years ago, we again traveled all the way to Cleveland for the surgery.
K kaydbirdMember
I had a j-pouch 12 years then developed a fistula that could not be fixed. Instead of an ileostomy I opted for the k-pouch which I love. I never really considered the BCIR simply because it would mean traveling to florida and that seemed ridiculous since CC is at my back door. I've really come to think of kock pouch and BCIR as like coke and pepsi. Ya, there's some difference, and everyone has their favorite they swear by but.... (you get the picture).
My hospital stay was 9-10 days and I have not had any real issues since.
Yes, you are hospitalized for almost a month with BCIR because they keep you the entire time you have the indwelling cath as far as I know. I personally think this is overkill.
Is it a rough period? yes. Is it a pain? yes. BUt, I would rather deal with it myself out of the hospital, sleeping in my own bed and not being woken up at 3am every day for a BP check. But, thats me. Wink
Good luck with your research and decision!
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katie
Dixie from SaskatchewanDixie from SaskatchewanMember
When I had my original ileostomy surgery in 1976 I was kept in the hospital for a month. Now it is much shorter for that surgery - probably only a week. When I had my ileostomy converted to a Kock pouch in 2004 & for all my subsequent Kock pouch surgeries I was only kept in for a week. I really think patients should be kept in hospital for the entire time the constant drain is left in - for 3 weeks. There were a couple of times a few days after surgery the doctors were talking about discharging me & I was in tears as I didn't feel I was ready to be discharged. I feel hospitals are trying to cut costs at patients' expense.
Jan DollarJan DollarModerator, RN, retired
I don't think you can gauge responsibility based on the length of hospital stay. Long stays are more old fashioned, in the respect that is the "old school" way of thinking. It is not all about saving money either. The shorter the hospital stay, the LESS likely you are to acquire a post op infection. Hospital acquired infections are the worst kind and most likely to be antibiotic resistant. They find that in general, people actually recuperate better at home, sleeping better in their own beds. The key is having good patient and family instructions, and a good avenue of communication.

But, if you are doing a surgery that is rare and unique, I don't think it is too uncommon to want to keep the patient close by in case of any complications.

My preference would be a short hospital stay and an excellent outpatient department!

Jan Smiler
L lynne-saMember
When I first investigated the BCIR in St. Pete, I was puzzled by the required 3 week stay IN HOSPITAL. I could understand staying in the area, a tourist destination with a wide range of accommodations, but IN HOSPITAL did seem kind of long. If one had been allowed to stay in the area, one could go in for outpatient care daily. The cynic in me thought a 3 week stay might be a way to keep beds filled.

After my j-pouch surgery at the Medical College of Virginia, there was a one-week stay. After my K-pouch surgery at CC and the one week in their hospital, my husband drove me home to Virginia (a 13 hour trip with a motel stay halfway) with the knowledge that we were required to return to Cleveland 3 weeks later when the catheter was removed and I received coaching on intubating myself. Had there been some major problem that couldn't be addressed by telephone, we would have returned to CC sooner.

I just hate hospital stays. I hate the regimentation, noise, food, etc. The shorter the better as far as I am concerned.
GW Guy with j pouchMember
This is what I was told by palms at FL: after surgery, i will be on tpn for 10 days. this is to give enough time for the pouch to heal. After that, start liquid diet, then semi-liquid.
Start with constant draining. Then a few days later, start intubating on every 2 hour schedule, then 3 hours ,. By the time when I am discharged, it will be on 4 hours schedule...
As they said, by the time you are ready for discharge, you will be able to fly or drive home.

I thought I would feel more comfortable with that. Consider either cc or palm to me is out of town, I would prefer be a better sharp by the time I am discharged, do not want to have possible revisit if possible.

When i did j pouch at cc, I was living in Cleveland, I had counterless trips to visit the surgen and stoma nurse for problems with the stoma. It would not be Possible for me this time...

Think about revenue point of view, the longer we stay, the less revenue each bed/day would produce. For hospital, the shorter you stay, the more surgeries they will be able to perform with same number of beds in the same period of time. And the more surgeries they perform, the more money they will make....

In palm, there is only one surgen doing BCIR, and he does around 150 a year, that means he at least does 3 in a week. The volume of BCIR he does is much larger than any surgen in cc does k pouch...

If you go to http://kockpouch.com you can find statements made there

An Improvement on the Kock Pouch: "Nipple Valve"

The Kock Pouch Complication: The Slipped Valve

A Further Improvement on the Kock Pouch: A Collar on the Nipple Valve, the Barnett Modification

And I have not seen anywhere saying any other modified k pouch is better than BCIR.

It is my understanding that BCIR is a better option over k pouch. The more difficult question is how much better. Is it worth the trouble....

What do you think?
Last edited by Guy with j pouch
GW Guy with j pouchMember
Another point to make, I have seen many posting here mentioning repair, leakage... Eric is a recent example. But in BCIR message board, I do not see as much of such posting....
It looks to me BCIR has less complications than k pouch... You can find people have had BCIR for 29 years and did not go back to the surgen for once...

One problem is that BCIR is still an elective procedure, some insurance policies do not cover it, some cover it but require per authorization. This is the reason I still not able to confirm my surgery date....
J Jasmine 2Member
The BCIR isn't better than the Kock Pouch. You didn't mention any articles on PubMed done on the BCIR....resent studies. We have given articles on this site which you didn't mention. If you are interested in the BCIR, go to BCIR.com. Seems you want there information, that site is for Palms in Florida.

A long stay isn't needed anymore, like Jan said that is old school. Infections in hospitals are very dangerous and the longer you're in the hospital the more chances you have of being subjected to one. Also, one surgeon does the BCIR, sounds like it isn't the best operation to have. Makes me wonder how long it will be in practice as the Kock Pouch is done all over.

There is no....http://kockpouch.com/
Last edited by Jasmine 2
GW Guy with j pouchMember
Jasmine, thanks for your posting, that suggested me to do some search in pubmed, when I search BCIR and kock, I only got one article which was published in 1995. It says
quote:
BCIR represents a successful alternative to patients with a conventional Brooke ileostomy or those who are not candidates for the ileal pouch-anal anastomosis.


When I search Continent ileostomy, I found an article published in 2009 by cc on Continent ileostomy performed in cc, it says
quote:
The 30-day complication rate was 31.3%. There were no perioperative deaths. Median follow-up was five years. The long-term dysfunction rate was 50%, the complication rate was 60.9%, and the revision rate 45.3%. The median revision-free interval was 2.8 years (range, 3 months to 19 years) and the retention rate of continent ileostomy was 95.3% (61 of 64). Median continent ileostomy survival time was 4.2 (range, 1-19) years. The median quality-of-life score was 0.77.


Another article published in 2005 by Department of Colon and Rectal Surgery, Ochsner Clinic Foundation, New Orleans, Louisiana
It says
quote:
Continent ileostomies continue to have a high rate of reoperations, reasonable functional results, and are a viable option for failed ileal pouch-anal pouch patients. Surgeons electing to perform continent ileostomies must carefully select their patients and advise them of the high potential for reoperations. Despite a high reoperation rate, patients are pleased with their continent ileostomies.


As for kock pouch site, I fixed a small typo, it is working now, I believe it is a site owned by another BCIR surgeon in LA. so the statements made there may not be objective enough...


I am not sure how to interpret these articles.... What continent ileostomy means here? K pouch only or k pouch and BCIR? Since cc does not do BCIR, is it reasonable to assume the publication cc did in 2009 was only for kock pouch?

If you have a more recent article on BCIR, could you please PM to me, it would help me in making decision. There is still time for me to change mind.


Thanks.


Still with j
Last edited by Guy with j pouch
skn69skn69Member
Guy,
When I had my k pouch done in 1979 I stayed in hospital for 30 days...2 days pre-op to clean me out and run the intestine + antibiotics...then surgery and the whole period of the indewelling cath + intubation trainning ( we would clamp the valve 1hr in 4, then 2 out of 4 etc.. until it was removed)...I left knowing that I had to go back for the colectomy so there was an obligatory 2 step (my unhappy colon decided the date for me...3 months later)...my valve was damaged at week 2 due to my flying out of the wheelchair with the indwelling cath attached to the bag that was hooked to the chair (unusual accident, I know!)...so it needed fixing during the colectomy...after the final surgery (3 steps in all) I was pretty much perfect (at least my pouch was) for 20yrs...my valve slippage was a result of another medical problem (necrosis behind the pouch/abdominal wall) and the resulting disaster..if not I would still be fine...each pouch has its own list of problems/complications/advantages but it really is up to you to be comfortable with your decision...it is, after all, your life that we are talking about...so after reading each and every answer to your post...it is up to you to decide what makes you comfortable for your body/life/future.
Sharon
L lynne-saMember
An interesting point was made here about the hospital profits or lack thereof of long hospital stays after surgery. Guy with j pouch wrote "For the hospital, the shorter you stay, the more surgeries they will be able to perform with the same number of beds in the same period of time" "and the more surgeries they perform, the more money they will make..."

That theory presumes that there is a greater number of patients wanting the specific surgery than are currently being treated. If only, say, 150 people want a specific surgery at a specific hospital per year, keeping that finite number of patients in hospital for a shorter stay would lose $ for the institution. I was told when I was in St. Pete that a specific floor with trained nurses was allocated for BCIR surgeries. That's good but means that those beds must be filled for the hospital's bottom line. I know they advertise for patients. Maybe that fact affects the length of stay. Some patients may prefer the longer stay but the fact that hospitals in Cleveland, Toronto, New York, etc., have a shorter stay leads me to wonder.

Incidentally, the doctor featured in the site you posted, Dr. Schiller, was well-liked by patients but I believe is now in another state where he no longer has the staff to perform BCIR's. If I'm correct, it's sad because so few surgeons perform continent ileostomies of any type.

Sounds like you prefer a BCIR. If so, go for it! On the other hand, I'm very happy with my experience with CC.
GW Guy with j pouchMember
Hi, all I just came back from cc, I spent a day there, in 8:00 morning, dr Shen did scope for me and get kenalog injection done.
N 9:30 I got to meet my surgeon, dr. Stocchi, who did my j pouch. Then in the later afternoon I met with dr. Shen again in his office. In between I also met with an assistant of a k pouch surgeon

This is I have learned:

1) Dr Shen does not believe I need or should consider k pouch or BCIR at this point of time.
2) Dr. Shen does not believe BCIR is a good surgery technique from GI point of view.
3) Dr. Stocchi think the story of BCIR is too good to be true, but he said I did not know much about BCIR. When asked why top hospital like cc does not do BCIR, I got no answer.
4) in cc, the kpouch volume is small, for one k pouch surgeon at most perform one per month.
5) when I shown the article published by cc, the assistant told me that does not make sense. When I ask her if BCIR is good, why not cc does not do it, she told me, that was the decision. When I asked about reason or justification of that decision, she said, she would get the surgeon give me a call.


6) both dr. Shen and dr, Stocchi both recommended loop ileostomy as temp solution wait for the new treatment to work and to give my anal and the pouch to take a rest.

however, it looks working, the pain in the anal area has been reduced in the evening when I am in the hotel room.

Beside, dr. Shen ordered MRI , stool test and Anal rectal manometers test for me, so I will go to cc again tomorrow.

I guess I will hold on the BCIR or k pouch for now to give these treatment a chance...

Looks like I still need to do more research on them...

This is not something like software you can make a back up, when something went bad, you can restore it back... Once a decision is made, I will live with it, good or bad...that got me scare..,.


I will keep you posted,

Thanks.

J guy
JaniceMJaniceMMember
looks like CC drs gave you sound advice! They are the best at colorectal surgeries and do what is best for the patient and their specific situation. They are not GUNG HO with KPs as other offices can be promoting the BCIR. The jpouch is still the gold standard and if you can keep it that makes sense to do a loop temp for healing.
L lifescircleMember
I'm now checking on BCIR or K pouch options. I've met the doctor in FL. who performs BCIR and I have an appointment with Dr. Stocchi at Cleveland Clinic on Tuesday. CC can't do BCIR surgeries because it is a patented procedure. I have been trying to figure out the differences. Bottom line - I just want a continent ileostomy that works great for a long time!
K kaydbirdMember
I have a k-pouch but from what I can tell the differences between a BCIR and K-pouch is like coke and pepsi. Ya, they are different but they are basically the same and everybody has their favorite. I have a k-pouch because I live in Ohio so I never even considered a BCIR. Probably if I lived in florida it would have been the other way around Big Grin

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katie
J Jasmine 2Member
If you can save your J-pouch and CC recommends it, I would listen to them. There are no guarantees with any surgery. Kock Pouches are the first pouch that was done, then the J-pouch took over. You will have better access to problems with a J-pouch as that is the Gold standard of the day. I've had a Kock Pouch for 36 years and am now just having trouble with the valve which has a stricture with a 90 degree curve. So I couldn't get my catheter in and had to go to the Mayo Clinic because no one even knows what a Kock Pouch is here were I live in Wisconsin. I won't know for 9 weeks if my valve is ok, I had a dilation done to break up the stricture. I now wear the catheter for 3 weeks then take it out and go week by week emptying every 2 hours and add one hour each week to empty up to the week of every 6 hours in between emptying. During this time I will be wearing the leg bag at night. I love my Kock Pouch and I wish they did it more and more surgeons were trained to do this wonderful procedure. I am allergic to adhesive so this is a surgery I need to have since I had my rectum removed way back in 1977 before the J-pouch was even invented. Unless things change and more people become an Advocate for the Kock Pouch, I'm afraid it will become obsolete in the future which is very sad since it is such a great surgery. I was told I was one of the lucky ones to have had such a great working Kock Pouch for all these years. I am trying to get the Mayo Clinic to start doing them again but the only one listening is Dr. Dozois, Professor of Surgery there. All other nurses and doctors don't seem to want to see it back again....too many complications with the valve. So take it from there...there are no guarantees, but since you have the parts for a J-pouch, I would think this over very carefully because once your rectum is gone, it's gone.
skn69skn69Member
In my personal opinion it is a question of proximity, budget, insurance and confidence.
I've had my k pouch for 35yrs and need numerous revisions due to complications related to my disease (D'Eller's-Danlos syndrom: a chronic problem with collagene and connective tissue: I don't heal well or quickly).
My original surgery and the subsequent ones in the 80's all required long hospital stays of up to a month. My most recent revisions (done since 2000) were all much shorter (7-9 days).
Protocols change and things evolve but mostly doctors listen to patients (or the good ones do)modify their procedures according to their long term results plus complications.
The k pouch valve has been revised to better resist slippage and twists. It doesn't mean that they will not occur but that it happens less often, ditto for slippage and the pouch falling off of the wall...it is rare but still happens. A lot of the complications relate to how we heal and or ability to build scar tissue or not.
I would not trash the BCIR or k pouch...they are both wonderful options for people who cannot have the j pouch or had one and it failed.
I just hope that they both continue to have success and become more and more common and that new and younger surgeons train to create them and continue to promote them.
Sharon
vanessavyvanessavyMember
Kpouch you are sent home with a leg bag to continue healing. Palms you walk out with no bag. You stay hooked up until the last few days. I needed way more than 3 weeks. My husband and I drove back to Dallas (17 hours) after my surgery. I was ok and wore a leg bag so I wouldn't have to intubate on a schedule. Even Dietz thought my valve was super good when I had a check up at CC. They are both amazing surgeons.
sharon O.sharon O.Member

Thank you for posting all of this information, your experiences, and your opinions. Such a wealth of info!! I have had a j pouch since 2006. Been having mechanical issues at takedown/old stoma sight pretty regularly since 2010 (my last resection). Trying to get insurance to approve pill camera for more info. They have denied it 2x now. Saying it's experimental. They paid for it in 2010. Surgeon is considering temp ileo to see if my quality of life improves (nutrition, energy, etc). Just weighing options....should I consider k pouch, BCIR, reconnect what I have and hope it gets better, temp ileo???? So confused.....but so tired of being sick and in PAIN.

sharon 

Last edited by sharon O.
BillVBillVMember

Sharon, I’m sorry to learn about the problems you are having with your j pouch. I assume from your post that it is still connected to your ilium, but you mentioned “reconnection”.  If you could provide more detail about the mechanical issues you are having (e.g. strictures, blockages, etc.), people on this forum would be in a better position to offer suggestions.  You might wish to get a second opinion from a surgeon who has had lots of experience dealing with j pouch problems.  The Cleveland Clinic and Mayo Clinic would be good choices for a consultation.

 Although a temporary ileostomy could help improve your quality of life in the short run, there may be better options that would lead to a long term solution.  In my opinion, you should do everything possible to save your j pouch since there is no going back once your j pouch is removed and your bottom sewn shut.  If your pouch cannot be saved, the k pouch and BCIR are alternatives that avoid having an external bag with its associated issues.  Both of these procedures have a high success rate and high user satisfaction.   There is a lot of information about these procedures on the internet.

Bill

skn69skn69Member

Hi Sharon,

Like Bill says, first, you (we) need to know what is wrong with your j pouch, why you need(ed) it disconnected and what your long-term goals are...

 A functioning j pouch is so much better than a k pouch if it is possible...a K pouch is a major surgery, even if they can reuse your old j pouch to create it...And if they cannot use your old j pouch it is an even bigger surgery. Not something to be undertaken lightly...it should be your last resort. 

A functioning k pouch is great when it is well built and when it works but it requires an experienced surgeon to build it and a good infrastructure to teach you how to use it and maintain it. 

I am not trying to discourage you...far from it...more like trying to get you to examine all of your possible options. 

K pouches are veritable orphans in some regions...no local surgeons to fix them if they breakdown, no G.I.s to help you with them if you have problems because often times no one knows what they are.

I would say that if you run out of all other options and if you decided to have a k pouch, you should make sure that you research all of the local surgeons to find out who does them, how long they have been doing them and their success rate...

Keep us posted on what is going on and how you are doing.

Sharon

 

 

sharon O.sharon O.Member

That's just it.....we have spent months and months going through tests to figure out the exact problem I have had pouch scoped, CT, small bowel series 2x, pouch function tested (2 different tests)....all that show a possible intermittent problem (stricture, twisting, narrowing, etc) not really sure they say. I can feel pressure just above the old stoma sight and I can tell you "here it comes" then in an instant the bowel flips (or whatever it's doing). Everyone in the room can hear it and I can see and feel it. It then continues with the same trickling sounds,  gurgles, groans, and eventually it sounds like a water faucet. Sounds and feels like it's twisting on itself and then eventually working itself out. Problem is that every time I swallow food (any type) or drink (any type), the peristalsis begins and it's almost immediate in my gut. The doc's theory is that a section of the bowel (where the take down sight is)  which has been dialated and then resected in 2010.....is not working. The portion above it works and the portion below it works and he can't see an obvious stricture or blockage thus far. The bowel hasn't shown to be dead.....but his guess is that it doesn't work in that spot. He wants the camera pill to go through and give him more information. He doesn't want to just give me the ostomy again if we don't have to because the pouch functions well (although I do get pouchitis a lot). I brought up the possibility of converting to a k pouch or possible BCIR to him as an alternative to an outside appliance. He said he wouldn't obviously be able to make that conversion, but would definitely want me to explore my options before moving forward.  I live 2 hours from St. Pete where the BCIR clinic is. I had my original surgery and takedown  at CC in Ohio with Dr. Dan Geisler (worked with Dr. Fazio). He is no longer at CC. I did find him back in 2010 in Pittsburgh and he saw me within 3 days of my calling him from FL! He found the problem I was having then at the same sight and is the one who dialated the area hoping it would fix it. When I returned home and it hadn't worked, he referred me to another surgeon here who did the small bowel resection (Dr. Larache-FL Hospital Orlando).  (All of this was initiated by the surgeon I see now.....long story.....he (Dr. Joseph Gallagher) is the colorectal surgeon who delivered my son by C-section at 1lb 1oz. I had only consulted Dr. Gallagher during my pregnancy as a precaution for my j pouch for my planned C-section. Dr. Gallagher is fighting with my insurance company to approve the camera so he doesn't have to "explore" my abdomen to try to figure it out....but says it may come tot that. I 100% want to keep my j pouch if I can.....I'm afraid to do BCIR or K pouch, but I am afraid to continue this way because my 1lb 1oz baby boy is now 8 and doing well!! He has had open heart surgery, 5 brain surgeries, has 3 shunts, and is in a regular ed classroom, plays ice hockey, plays t ball, and is thriving It's just getting increasingly difficult for me to keep up. I still work full time but am getting weaker by the day. Doing laundry wears me out at this point. He said my body is starving from the inside out. My stomach is enlarged and elongated from starvation....even though I eat. I just have become that person who only eats when it is necessary (because I am dizzy or have outward symptoms). I know this is a lot of rambling it seems....but I do appreciate your eyes and ears. Thanks

J JLHMember

sharon--it is amazing that you are keeping up with what you are doing with these difficult symptoms and NO answer to the problem.  very frustrating.  you are amazing.

i have no idea what the problem is, although others on this forum might have had similar experiences and can share their knowledge.  my only suggestion  is to get a second/third opinion from a different hospital system.  i find there is 'group think' within hospital systems and they look at what the other doctors.  it you can get to the cleveland clinic or mayo in florida then you are in their system and those doctors can consult with their gi specialists.

keep us posted.  stay strong.  sending healing white light.  janet

skn69skn69Member

Sharon, 

Has anyone considered hernias? 

I had all sorts of k pouch problems, difficulty emptying, what felt like a twisted valve (it was twisted) digestive issues, blocages and pain. No one could figure it out (they were not looking for the right thing...preconceived notions usually cause people to expect to find what they are looking for and if not, they give up looking).

After a number of repeat tests I sent my scans and IRM to Toronto and my k pouch specialist there...The first time it was a peristomal hernia (a hernia around the stoma site), the second time he found that my whole pouch had twisted up into a hernia and was basically upside-down which created a valve twist and all of the pain and problems.

Turns out that a lot of things can go wrong...And not always those that people think of most often...they need to try to think outside the box...do they still do good, old fashioned barium series? After insisting long and hard they finally did a 'contrast study' that helped a lot to clarify things recently...

Just rambling and trying to throw ideas out...

Good luck

Sharon

JenJenJenJenMember

About a year after I got my j pouch I was having similar "blockage" symptoms and was hospitalized for these several times -- but like you just kept getting sicker. My colorectal surgeon put off operating as long as possible because I had already had a three step because I was so sick when I had my colon removed.

So I had a consult with a excellent complex hernia repair surgeon in my area who said I definitely had a large defect that could be complicating things. But again, that we should "wait and see" because it would be such a difficult repair given the other operations and possible complications.

That lasted until I ended up in ICU a month later after having been admitted for another blockage episode and experiencing a "system shutdown." It was at that point that my colorectal and hernia surgeons got together and agreed to tag team a hernia repair coupled with a little exploratory surgery on the side.

It worked! It was a difficult recovery, but layering relocated side wall abdominal muscles with pig skin over the incisional hernia was the ticket. They also said they found a bunch of extra unknown tissue that could have been strangling my intestines and removed that as well. The next couple years I had still had occasional scares, but no more serious blockage problems.

Then chronic pouchitis and cuffitis got the better of me and required I convert to the k-pouch (@ CC this spring.) All this by way of saying that your problem doesn't sound like something that warrants ditching your j pouch. I hope you can get the capsule, but if not, exploratory surgery might be your best option if you're getting that much sicker and malnourished. Starting all over with the k pouch (which I now know is kind of like getting a new pouch too, not just the valve) won't necessarily fix this if they don't know what it causing it. Plus, it's a literal pain in the butt!

God bless you and your amazing son! I hope you can consult with a nutritionist or doc that can help with the malnourishment and pray that you find a solution soon,

Jen

 

 

JenJenJenJenMember

I definitely would -- along with getting recommendations on a very good hernia doc. I have heard patients receive a lot of misinformation after talking to general surgeons who happen to do hernia operations. Talk to a surgeon who specializes in fixing complex hernias and incisional hernias (given your c-section and that your problem might be near your old stoma.) The other advantage is that this type of doc might be less likely to baulk at operating around your pouch.

Sidenote: Obviously I don't know about your insurance, but I wonder if a different surgeon or hernia doc could code the capsule endoscopy as being required for your "hernia" or some other condition? If its being done to rule out the need for exploratory surgery they might change their ruling. I'm no expert, but I have had to game the system a few times to get things covered. Will a customer service person with your insurance company answer the question, "what conditions IS it authorized to treat?"

I know surgery has a lot of inherent risks, but if your j-pouch is working well, I'd certainly do it to keep it -- especially since your only option is beginning to sound like surgery anyway. And it certainly doesn't sound like you should go on like you are much longer. Praying for your improved health --Jen

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