![[United Ostomy Associations of America, Inc.]](https://www.uoaa.org/forum/uoaaxt/images/uoaa_header_board7.png)
NEW AND SCARED
Forum rules
Before posting, please read our Discussion Board Terms and Conditions and our Code of Conduct.
Before posting, please read our Discussion Board Terms and Conditions and our Code of Conduct.
NEW AND SCARED
I WAS DIAGNOSED WITH UC WHEN I WAS 10 . FOR 4 YEARS I WAS IN THE HOSPITAL MORE THAN I WAS OUT. I WAS ON HEAVY STEROIDS FOR MOST OF THAT TIME, THAN THE DAY BEFORE CHRISTMAS 2001 MY DR. TOOK ME OFF EVERYTHING BECAUSE I WAS GOING BLIND AND MY LIVER WAS GOING BAD. I THEN THREW UP FOR 30 DAYS STRAIGHT AND THE ONLY POSITIVE WAS I LOST 30 POUNDS. I ENDED UP IN ST. PETE CHILDRENS HOSPITAL AND THEY REMOVED MY COLON TO SAVE MY LIFE, SO THEY SAY. MY DR. TOLD ME AFTER MY COLON WAS OUT I WOULD BE DONE WITH MY UC,BUT THAT PROVED NOT TO BE TRUE. SINCE THEN I HAVE HAD NUMEROUS FLARE-UPS. I ONLY ATTENDED SCHOOL FOR I YEAR AND HAVE BEEN TOO SICK EVER SINCE. I MISSED ALL OF MY SENIOR YEAR. MY LIFE STINKS. I WAS TOLD I ONLY HAVE 1 OPTION, AN OSTOMY. THIS PUT ME INTO A PANIC, SINCE I HAD A 3 PART SURGERY FOR MY PULL THRU AND HAD AN OSTOMY FOR 6 MONTHS WITH HORRIBLE RESULTS. I AM SCARED TO DEATH. I HATED THE TUBE DOWN MY THROAT FOR DAYS,I'M CONCERNED IF THIS DOESN'T MAKE ME ANY BETTER, I'VE HAD ANOTHER SURGERY FOR NOTHING. I NEED TO KNOW IF ANY ONE OUT THERE HAS A BARNET OSTOMY AND HAD ANY PROBLEMS. SINCE MY WHOLE LIFE IS AHEAD OF BE I WAS HOPING THERE MIGHT BE SOME MENTORS. DOES THE INSIDE POUCHES GET INFECTED LIKE THE JPOUCHES I'VE READ ABOUT? DOES IT HURT TO STICK THE TUBE IN? WHICH IS BETTER IN OR OUT POUCHES? I HAVE SO MANY QUESTIONS AND SO MUCH FEAR, FEAR TO STAY SICK AND FEAR TO GO FORWARD. I WOULD LIKE ANY HELP AND INSIGHT.
HI Tam,
You didn't give your age, but I am guessing you are younger.Your story sounds similar to mine.
I was diagnosed with UC at age 9. Did years of steroids, flareups, in & out of the hospital, etc. At 15, I had my colon removed and a jpouch done with a temporary ileostomy in a 2 part procedure. I was connected to the jpouch 3 months later and expected to be cured. Not so...
I had problem after problem with the jpouch..it got holes in it, I got abcesses in my abdomen, alm ost lost the ability to walk, you name it. This happened twice. The second time it happened I ended up in emergency surgery and a permanent ileostomy saved my life.
But when I woke up with the ostomy, I wished they had let me die! I really thought my life was over at 19! I couldn't imagine I would ever be normal or happy again. I was so wrong...........
I was able to go to college, date, have sex
, get married, have a baby...all those things I was sure the ostomy would prevent me from doing.
Don't get me wrong...it took me a while ( years ) to come to grips with the fact that I would have a "bag" for the rest of my life. But once I changed my perspective, I realized what a blessing it really was.
My ostomy not only allowed me to be healthy enough to accomplish all those things, but it's given me opportunities to do things I never would have imagined. I've traveled the country for ostomy related camps and conferences, I've written published articles, appeared on TV and met some of the MOST amazing people that , without an ostomy, I never would have had the privilege to know.
I'm 30 now, and I work for the Crohn's and Colitis Foundation, and I run the young adult group for UOAA (YODAA..check out our discussion board) I love what I do , primarily because I get to encourage people who are in situations like yours.
There is life after ostomy...every one of us on this board are a testimony to that.
Regarding a Barnett Continent Ostomy cr BCIR as they are commonly refered to... they are very similar to a Koch pouch. They're formed out of small intstine and a special valve is made to keep it continent. I've heard of lots of people having problems with this valve (leakage, prolapse, etc), and yes...you can get infections and pouchitis in the BCIR just like in a jpouch. You also need to evaluate just how much small bowel you are working with. If you've got a jpouch then you're already using some of your ileum there. To form a BCIR, it'll take another portion of the small bowel. If you have problems with the BCIR, then you've lost that portion of small bowel and may have to deal with malabsorbtion and short bowel syndrome. Not trying to scare you...these are just some common problems that people who've had multiple continent diversions deal with. You need to get ALL the facts and really evaluate what option is going to allow you to have the BEST quality of life.
I hope you find the encouragement and hope you're looking for here. Please let me know if I can help in any way.
~Kristin
YODAA Chair
You didn't give your age, but I am guessing you are younger.Your story sounds similar to mine.
I was diagnosed with UC at age 9. Did years of steroids, flareups, in & out of the hospital, etc. At 15, I had my colon removed and a jpouch done with a temporary ileostomy in a 2 part procedure. I was connected to the jpouch 3 months later and expected to be cured. Not so...
I had problem after problem with the jpouch..it got holes in it, I got abcesses in my abdomen, alm ost lost the ability to walk, you name it. This happened twice. The second time it happened I ended up in emergency surgery and a permanent ileostomy saved my life.
But when I woke up with the ostomy, I wished they had let me die! I really thought my life was over at 19! I couldn't imagine I would ever be normal or happy again. I was so wrong...........
I was able to go to college, date, have sex
, get married, have a baby...all those things I was sure the ostomy would prevent me from doing.Don't get me wrong...it took me a while ( years ) to come to grips with the fact that I would have a "bag" for the rest of my life. But once I changed my perspective, I realized what a blessing it really was.
My ostomy not only allowed me to be healthy enough to accomplish all those things, but it's given me opportunities to do things I never would have imagined. I've traveled the country for ostomy related camps and conferences, I've written published articles, appeared on TV and met some of the MOST amazing people that , without an ostomy, I never would have had the privilege to know.
I'm 30 now, and I work for the Crohn's and Colitis Foundation, and I run the young adult group for UOAA (YODAA..check out our discussion board) I love what I do , primarily because I get to encourage people who are in situations like yours.
There is life after ostomy...every one of us on this board are a testimony to that.
Regarding a Barnett Continent Ostomy cr BCIR as they are commonly refered to... they are very similar to a Koch pouch. They're formed out of small intstine and a special valve is made to keep it continent. I've heard of lots of people having problems with this valve (leakage, prolapse, etc), and yes...you can get infections and pouchitis in the BCIR just like in a jpouch. You also need to evaluate just how much small bowel you are working with. If you've got a jpouch then you're already using some of your ileum there. To form a BCIR, it'll take another portion of the small bowel. If you have problems with the BCIR, then you've lost that portion of small bowel and may have to deal with malabsorbtion and short bowel syndrome. Not trying to scare you...these are just some common problems that people who've had multiple continent diversions deal with. You need to get ALL the facts and really evaluate what option is going to allow you to have the BEST quality of life.
I hope you find the encouragement and hope you're looking for here. Please let me know if I can help in any way.
~Kristin
YODAA Chair
Better to light one small candle
than to curse the darkness.
than to curse the darkness.
New and Scared
Thanks Kristin,
I'm hoping to hear from alot of people and researching a bit. It still scares me about ostomy and bags. Do you feel that an outside pouch is better than an inside pouch? Since, you have it outside, would you ever go to a inside?
tam22
I'm hoping to hear from alot of people and researching a bit. It still scares me about ostomy and bags. Do you feel that an outside pouch is better than an inside pouch? Since, you have it outside, would you ever go to a inside?
tam22
Does anyone have an Barnett pouch or the outside colostomy?
I have UC still after my pull thru 4 years ago and my options for a better life have come down to choosing a bag. But I don't know which one will give me a better quality of life. Please give me your thoughts and opinions and experiences on having one or the other.
tam22
tam22
Tam22,
I had a traditional Ileostomy for 13 years and then had it changed to a Kock Pouch, so I have lived with both outside and inside pouches. I would not trade my Kock Pouch for anything, and have been fortunate enough to not have any problems with it since I got it in 1990.
My surgery was done by Dr. Fazio at the Cleveland Clinic - he's THE BEST - and I highly recommend him.
Please feel free to email me with any questions you might have. Good luck to you,
Lynne
CDN Chairperson
I had a traditional Ileostomy for 13 years and then had it changed to a Kock Pouch, so I have lived with both outside and inside pouches. I would not trade my Kock Pouch for anything, and have been fortunate enough to not have any problems with it since I got it in 1990.
My surgery was done by Dr. Fazio at the Cleveland Clinic - he's THE BEST - and I highly recommend him.
Please feel free to email me with any questions you might have. Good luck to you,
Lynne
CDN Chairperson
Hi Tam22
In 1979 I had a Kock pouch surgery b/c of non-responsive UC.I was 24. My pouch served me well for 26 years. I had pouchitis once and then a slipped nipple valve. I have learned that pouchitis is not as common in Kocks as it is in Jpouches.I went in for surgery to repair the valve but it was unsuccessful and ended up wearing an external bag. After two years of lots of thought I consulted with Dr. Fazio about a second Kock. It was done in January and I am well.
As Kristin said, your case would need to be evaluated and the length of bowel need to be determined. What I do know is that Dr. Fazio wouldn't put anyone in jeapordy.
In 1979 I had a Kock pouch surgery b/c of non-responsive UC.I was 24. My pouch served me well for 26 years. I had pouchitis once and then a slipped nipple valve. I have learned that pouchitis is not as common in Kocks as it is in Jpouches.I went in for surgery to repair the valve but it was unsuccessful and ended up wearing an external bag. After two years of lots of thought I consulted with Dr. Fazio about a second Kock. It was done in January and I am well.
As Kristin said, your case would need to be evaluated and the length of bowel need to be determined. What I do know is that Dr. Fazio wouldn't put anyone in jeapordy.
new and scared
Hi Tam,
This is a copy I posted on another part of this site. I had UC from 9 until 12....horrible hospital experiences. My life is very different now and I have worked thru and lot and am doing so well. By the way....you may really look at very holistic treatments, food allergies, etc. I realize that doctors don't really know much about health. I know we have emergency situations, but there is a lot you can take control of yourself. Educate yourself for the rest of your life. Good luck!
Lakshmi
Hi Folks,
I am new here. Just wanted to say I had the regular ileostomy until I was about 31....am 47 now. I had the BCIR because they said it had about a 98% success rate and was much better than the Koch pouch. Barnett did it himself....I was one of the first 100 to have it done. I am SOOOOO GLAD!!! I went thru all that pain so I could wear a bikini, go skinny dipping, have the wild and fun life that I lead. I am extremely active, workout 3x a week, dance 3x a week, do Bikram (hot yoga...sweat a LOT) 3 x a week. Have a great sex life....when I have a partner...or just decide to have a fling. I have not had one problem ever with this surgery.....have never returned to any doctor or hospital for anything regarding my digestive system. I eat really healthy food....do whatever I want. I just finished rapelling from a building in downtown Austin (where I live) for a site specific dance audition. I wear revealing dance clothes and get lots of compliments. I may sound somewhat vain but what can I say....I waited a long time to be able to excersize my vanity (of course I have my limits...my spiritual life is more important...but I think you can understand better than most folks what I am talking about). Anyway....I am so grateful for this surgery and have heard it is the most successful of all of these types. I highly recommend it.
This is a copy I posted on another part of this site. I had UC from 9 until 12....horrible hospital experiences. My life is very different now and I have worked thru and lot and am doing so well. By the way....you may really look at very holistic treatments, food allergies, etc. I realize that doctors don't really know much about health. I know we have emergency situations, but there is a lot you can take control of yourself. Educate yourself for the rest of your life. Good luck!
Lakshmi
Hi Folks,
I am new here. Just wanted to say I had the regular ileostomy until I was about 31....am 47 now. I had the BCIR because they said it had about a 98% success rate and was much better than the Koch pouch. Barnett did it himself....I was one of the first 100 to have it done. I am SOOOOO GLAD!!! I went thru all that pain so I could wear a bikini, go skinny dipping, have the wild and fun life that I lead. I am extremely active, workout 3x a week, dance 3x a week, do Bikram (hot yoga...sweat a LOT) 3 x a week. Have a great sex life....when I have a partner...or just decide to have a fling. I have not had one problem ever with this surgery.....have never returned to any doctor or hospital for anything regarding my digestive system. I eat really healthy food....do whatever I want. I just finished rapelling from a building in downtown Austin (where I live) for a site specific dance audition. I wear revealing dance clothes and get lots of compliments. I may sound somewhat vain but what can I say....I waited a long time to be able to excersize my vanity (of course I have my limits...my spiritual life is more important...but I think you can understand better than most folks what I am talking about). Anyway....I am so grateful for this surgery and have heard it is the most successful of all of these types. I highly recommend it.
Inside pouch or outside pouch?
Aloha Tam. After reading about urostomy's, I went with the outside pouch. The reason is,,,less infections. Also the doctor said if I have trouble later on in life, having the outside pouch would make things easier on me if surgery is needed.
Lakshmi,
Glad to hear your BCIR has worked out so well. I have had my Kock Pouch since 1990 with no problems also. By that time there were fewer places and surgeons doing the BCIR and also, my information was that the BCIR's had a much higher failure rate.
Regardless, what's most important is that we are both doing well, alive to talk about it, and good role models for others going through the same experiences.
Keep up the good work !
Lynne
Glad to hear your BCIR has worked out so well. I have had my Kock Pouch since 1990 with no problems also. By that time there were fewer places and surgeons doing the BCIR and also, my information was that the BCIR's had a much higher failure rate.
Regardless, what's most important is that we are both doing well, alive to talk about it, and good role models for others going through the same experiences.
Keep up the good work !
Lynne
New and Scared
I had UC for about 15 years that I knew about. I had surgery in 1993 to have my colon removed. In 1996 I had a BCIR (Barnet Contenent Intestinal Resovior). That was the best thing I have ever done and it has given me a wonderful quality of life. I play golf 2-3 times a week. I ride a motorcycle just about everyday.
No sticking the tub into you stomach does not hurt at all. In fact I use a 30 French Foley catheter vs the stiffer plastic tubing the hosipial recommended.
I had my surgery in St. Louis, MO and the surgery was done by Dr. Ronald Gaskin. I would recommend him to anyone. I have had some minor problems over the years with something called "Pouchitis"; but that's about all.
Good luck,
Mark
No sticking the tub into you stomach does not hurt at all. In fact I use a 30 French Foley catheter vs the stiffer plastic tubing the hosipial recommended.
I had my surgery in St. Louis, MO and the surgery was done by Dr. Ronald Gaskin. I would recommend him to anyone. I have had some minor problems over the years with something called "Pouchitis"; but that's about all.
Good luck,
Mark
Mark
Ostomy
I would highly recommend the BCIR to anyone. I am sorry that i did not do that instead of an ostomy. I am 65 year old and I play racquetball, golf and motorcyle. I have had some bouts with pouchitis; but that's about it. My Ostomy was done in 1993 and my bcir in 1996. I would trade the bcir anytime.
Mark