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Beverly;
I will be at the seminar also and will talk to you about anything under the sun concerning the procedure.
Ray
A BIG question: Permanent Ileostomy/Kock/BCIR?
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Re: A BIG question: Permanent Ileostomy/Kock/BCIR?
Great! I may take you up on that. See u there 
Re: A BIG question: Permanent Ileostomy/Kock/BCIR?
Jimmy and to all of you who are considering converting to a Kock Pouch:
I'm new to this group so please bear with me. I would like to share with you my experience with the Kock Pouch and by doing so I hope it will enable you to make a decision. First, let me be very clear. I am not here to convince you to convert to a Kock Pouch nor likewise to try to steer you away from converting to a Kock Ileostomy. Again, I merely hope to help you make an informed decision.
I had a Brooke Ileostomy (a bag) at the age of 20 (am now 61) after my colon perforated from UC and developed peritonitis. It was an acute emergency and had a Brooke Ileostomy without having any knowledge what I will wake up to. As you can imagine, it was a fairly major trauma. To make matters worse, perhaps because the surgery was performed under very dire conditions, the bag constantly leaked. I mean virtually every single day, sometimes 3-4 times a day. From the very beginning when I spoke with my surgeon about converting to a Kock Pouch, he very much opposed it and regardless of how many times I told him the bag is leaking he refused to believe me. He thought I simply can't or won't get used to living with a bag. Somehow all these leakages were merely in my head. One day when I visited him and the ostomy nurse was present (she was always there), at which time the ostomy nurse changed my bag and kept stressing that she can't figure out why I'm leaking and she too was convinced that since I never leak after she changes the bag my problems must be psychosomatic. After I left the office, when I was only a few feet away, I started feeling very wet again and sure enough I was leaking. I returned to my surgeon's office, picked up my dress to show them that I'm leaking. He and the ostomy nurse looked at each other in utter disbelief and finally realizing my problem is not emotional. The surgeon told me that since I obviously need to have some form of corrective surgery, I might as well convert to a Kock Pouch and he recommended I go down to Johns Hopkins hospital to have the surgery there. I did exactly that. Shortly after the conversion (barely two months) I developed problems and was unable to get the tube in. After two corrective surgeries, (the second one performed by Dr. Bauer in NY) the Kock Pouch worked extremely well for seven years. I was elated. I considered those to be the best seven years of my life since this nightmare started at 20. After 7 happy years I had ongoing problems. The valve would slip and was unable to get the tube in. I had at least 8 or 9 revisions if not more. After each revision, it would be fine again for a few months and then the valve would slip again. It became so bad that I lived with the tube taped in. That caused its own problems. After so many failed revisions, Dr. Bauer told me that he would consider himself a criminal if he did another revision. He told me the only surgery he will perform to correct the problem is converting back to a Brooke Ileostomy (a bag). If I don't agree, he advised me to see another surgeon. He absolutely refused to do another revision. It was gut-wrenching to say the least. Dr. Bauer could not explain to me why the valve continued to slip. Dr. Bauer is an extremely competent surgeon, at that time the most experienced surgeon in Kock Pouches. (Some of my revisions were done at the Mayo Clinic in Rochester, MN also at the hands of an outstanding surgeon). I did extensive reading when I converted back to a standard ileostomy and learned that as many as 20 percent of patients with Kock Pouches developed complications; for most it was a problem with the valve slipping. Perhaps today the success rate is much better. I don't know. And now for the part that I feel morally incumbent to share. With each revision I was not aware that I was slowly losing more and more of my small intestines in order to make another pouch. That is why today I have chronic severe diarrhea. Most people have about 25-30 feet of small intestine. I am now left (I had a GI test that determined it) with about 5 to 9 feet of small intestine. How have I been doing living with a bag again (since 1997)? For several years I leaked not God forbid as often as the first time around but it was bad enough. After joining an ostomy support group, someone (who later became not only my very best friend but also my soulmate) recommended to me that I try the Holister paste and belt. Sure enough, that amazingly completely resolved the problem. I won't lie and say that the bag has never leaked since then. It has but on very rare occasions. If I had to estimate I would guess that on the average twice a year, if that much at all. Hindsight of course is 20/20. If I had known what I know now, I would have converted back to a bag Ileostomy a lot sooner than I did. Good luck to all of you who have to make this very difficult decision. If you think I can be helpful in more ways please feel free to reach me either via this forum or by email.
Moderator edit: Removed email address from post, to protect poster from spambots. If you want to contact poster directly, use Contact button in the right column.
I'm new to this group so please bear with me. I would like to share with you my experience with the Kock Pouch and by doing so I hope it will enable you to make a decision. First, let me be very clear. I am not here to convince you to convert to a Kock Pouch nor likewise to try to steer you away from converting to a Kock Ileostomy. Again, I merely hope to help you make an informed decision.
I had a Brooke Ileostomy (a bag) at the age of 20 (am now 61) after my colon perforated from UC and developed peritonitis. It was an acute emergency and had a Brooke Ileostomy without having any knowledge what I will wake up to. As you can imagine, it was a fairly major trauma. To make matters worse, perhaps because the surgery was performed under very dire conditions, the bag constantly leaked. I mean virtually every single day, sometimes 3-4 times a day. From the very beginning when I spoke with my surgeon about converting to a Kock Pouch, he very much opposed it and regardless of how many times I told him the bag is leaking he refused to believe me. He thought I simply can't or won't get used to living with a bag. Somehow all these leakages were merely in my head. One day when I visited him and the ostomy nurse was present (she was always there), at which time the ostomy nurse changed my bag and kept stressing that she can't figure out why I'm leaking and she too was convinced that since I never leak after she changes the bag my problems must be psychosomatic. After I left the office, when I was only a few feet away, I started feeling very wet again and sure enough I was leaking. I returned to my surgeon's office, picked up my dress to show them that I'm leaking. He and the ostomy nurse looked at each other in utter disbelief and finally realizing my problem is not emotional. The surgeon told me that since I obviously need to have some form of corrective surgery, I might as well convert to a Kock Pouch and he recommended I go down to Johns Hopkins hospital to have the surgery there. I did exactly that. Shortly after the conversion (barely two months) I developed problems and was unable to get the tube in. After two corrective surgeries, (the second one performed by Dr. Bauer in NY) the Kock Pouch worked extremely well for seven years. I was elated. I considered those to be the best seven years of my life since this nightmare started at 20. After 7 happy years I had ongoing problems. The valve would slip and was unable to get the tube in. I had at least 8 or 9 revisions if not more. After each revision, it would be fine again for a few months and then the valve would slip again. It became so bad that I lived with the tube taped in. That caused its own problems. After so many failed revisions, Dr. Bauer told me that he would consider himself a criminal if he did another revision. He told me the only surgery he will perform to correct the problem is converting back to a Brooke Ileostomy (a bag). If I don't agree, he advised me to see another surgeon. He absolutely refused to do another revision. It was gut-wrenching to say the least. Dr. Bauer could not explain to me why the valve continued to slip. Dr. Bauer is an extremely competent surgeon, at that time the most experienced surgeon in Kock Pouches. (Some of my revisions were done at the Mayo Clinic in Rochester, MN also at the hands of an outstanding surgeon). I did extensive reading when I converted back to a standard ileostomy and learned that as many as 20 percent of patients with Kock Pouches developed complications; for most it was a problem with the valve slipping. Perhaps today the success rate is much better. I don't know. And now for the part that I feel morally incumbent to share. With each revision I was not aware that I was slowly losing more and more of my small intestines in order to make another pouch. That is why today I have chronic severe diarrhea. Most people have about 25-30 feet of small intestine. I am now left (I had a GI test that determined it) with about 5 to 9 feet of small intestine. How have I been doing living with a bag again (since 1997)? For several years I leaked not God forbid as often as the first time around but it was bad enough. After joining an ostomy support group, someone (who later became not only my very best friend but also my soulmate) recommended to me that I try the Holister paste and belt. Sure enough, that amazingly completely resolved the problem. I won't lie and say that the bag has never leaked since then. It has but on very rare occasions. If I had to estimate I would guess that on the average twice a year, if that much at all. Hindsight of course is 20/20. If I had known what I know now, I would have converted back to a bag Ileostomy a lot sooner than I did. Good luck to all of you who have to make this very difficult decision. If you think I can be helpful in more ways please feel free to reach me either via this forum or by email.
Moderator edit: Removed email address from post, to protect poster from spambots. If you want to contact poster directly, use Contact button in the right column.
Re: A BIG question: Permanent Ileostomy/Kock/BCIR?
It is sad to hear that you experienced so many problems with your K pouch and had to return to an ileostomy. Since the initial years, improvements in surgical techniques have significantly reduced valve failure and other complications. Currently, only 6-10% of those having K pouch or BCIR surgery need to have their internal pouch removed and return to the bag. Even though there is a possibility of complications with a K pouch or BCIR, this is a risk most people opting for these procedures are willing to take. The patient satisfaction rate for these 2 ileostomy alternatives is very high, in excess of 90%
Personally, I would take the risk of complications considering the low failure rate and the improved quality of life that these procedures provide. The decision on what alternative to select is a personal one best made after researching all of the available options.
Personally, I would take the risk of complications considering the low failure rate and the improved quality of life that these procedures provide. The decision on what alternative to select is a personal one best made after researching all of the available options.