Just wondering...did most of you go directly to a k-pouch?
I have:
No colon
Disconnected j-pouch (still inside)
Perm Ileostomy
Crohns disease
Is a k-pouch even an option? Do they come with their own set of problems?
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Cataja,
I went strait to it because I didn't have a choice...no sphincter and j pouches were even done back then...but a lot of people get K pouches due to failed j pouches....they are in a lot of ways, the next step..Especially for those who do not want to deal with outside bags...if you still have your j pouch inside and the tissue is healthy with no serious problems like ulcers or disease then you should look into it...get a consult with a good k pouch surgeon who lives close enough for an initial meeting.
Good luck
Sharon
I went strait to it because I didn't have a choice...no sphincter and j pouches were even done back then...but a lot of people get K pouches due to failed j pouches....they are in a lot of ways, the next step..Especially for those who do not want to deal with outside bags...if you still have your j pouch inside and the tissue is healthy with no serious problems like ulcers or disease then you should look into it...get a consult with a good k pouch surgeon who lives close enough for an initial meeting.
Good luck
Sharon
Thankks Sharon....
Cataja,
I had a good functioning j-pouch for about 11 years then I developed a RV fistula, tried a few repairs was diagnosed with chrons, had a temp ileo then got a k-pouch. Some surgeons will do a k-pouch for a chrons patient under very limited circumstances. my disease was entirely limited to my pouch and rectum so I was considered a good candidate under the circumstances.
I'm doing great. All my pouch scopes have been clean and I'm not on any chron's meds at all.
--
katie
I had a good functioning j-pouch for about 11 years then I developed a RV fistula, tried a few repairs was diagnosed with chrons, had a temp ileo then got a k-pouch. Some surgeons will do a k-pouch for a chrons patient under very limited circumstances. my disease was entirely limited to my pouch and rectum so I was considered a good candidate under the circumstances.
I'm doing great. All my pouch scopes have been clean and I'm not on any chron's meds at all.
--
katie
Thanks kaydbird...
Kpouch/BCIR usually is not offered for chrons patients. It is a case by case evaluation though and a few BCIRs on the bcir.com forum have chrons so it depends and since you had a jpouch you might be just fine.
I never had a jpouch even though in the end I couldn't have one due to the mess in my rectum called cancer. I honestly didn't want one after reading about it so I went straight to the BCIR.
I would get a few opinions in your case though. Don't stick to one kpouch surgeon ;-)
The problems I have don't even compare to my friend's issues with the jpouch. I don't think any colon removal is flawless. I think everyone is different. I know a guy that has become a good friend, who posts his BCIR draining videos on youtube that hasn't had one issue, no pouchitis, after going to the BCIR from the jpouch. Then some have valve issues, some have pouchitis that can be manages with antibiotics.
I have other issues with my insides that makes it tough some days but I am different than others. I also had to wear a leg bag for 8 days when my valve spasmed and intubation was a pain and I will never take my pouch for granted, I don't want an external bag so I am sticking with this little guy for ever, no matter what
I still olympic weight lift, I go to my job 9 hours a day. I drain 3 times a day unless I eat something that gives me horrible gas then maybe 4.
I have no issues with absorbing foods/vitamins, losing too much weight, etc.
I eat pretty much anything as long as I cut it up good or chew it good.
I never had a jpouch even though in the end I couldn't have one due to the mess in my rectum called cancer. I honestly didn't want one after reading about it so I went straight to the BCIR.
I would get a few opinions in your case though. Don't stick to one kpouch surgeon ;-)
The problems I have don't even compare to my friend's issues with the jpouch. I don't think any colon removal is flawless. I think everyone is different. I know a guy that has become a good friend, who posts his BCIR draining videos on youtube that hasn't had one issue, no pouchitis, after going to the BCIR from the jpouch. Then some have valve issues, some have pouchitis that can be manages with antibiotics.
I have other issues with my insides that makes it tough some days but I am different than others. I also had to wear a leg bag for 8 days when my valve spasmed and intubation was a pain and I will never take my pouch for granted, I don't want an external bag so I am sticking with this little guy for ever, no matter what
I still olympic weight lift, I go to my job 9 hours a day. I drain 3 times a day unless I eat something that gives me horrible gas then maybe 4.
I have no issues with absorbing foods/vitamins, losing too much weight, etc.
I eat pretty much anything as long as I cut it up good or chew it good.
I recently got the video from Florida about a BCIR. They told me they do not do it if you have Chrons.
They prefer not to but there are some chrons patients on their forum that have the BCIR. Some have been diagnosed after, their UC turned to it after and some had it prior. It is a case by case evaluation is what one general doctor told me when my friend with chrons visited me during my stay. I think it depends on where your issues are. My friend isn't eligible since her problems are all in her small intestines and not the colon.
With that being said most don't do jpouches for chrons either.
With that being said most don't do jpouches for chrons either.
Thanks...