I have just started researching the BCIR Barnett's Continent Ileostomy Reservoir, an internal pouch intubated via a valve, as an alternative to the jpouch and permanent ileostomy. BCIRers, including many who gave up on their disfunctional jpouches, seem to rave about how much better it works than the jpouch... Yet the jpouch, not the BCIR is considered "gold standard" for life without a colon. Why is that? Is it just because the BCIR is not done at most facilities and by most surgeons? Or because of the "eeew" factor of having to intubate with a valve and tube (though no appliance)? if the BCIR totlly eliminates the risk of incontinence and lack of control- even though it has the same pouchitis risk as a jpouch- it woukd seem logical that it should be the gold standard. What am I missing? Thanks!
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Ok folks, I have figured out that the BCIR us really just a proprietary version if a k-pouch... So i guess I'll check out k pouch forums to ask this too. But the general question still applies, if anyone has input I am much obliged.
Bad,
According to Dr Cohen of the Mt Sinai hospital in Toronto who is one of the first surgeons who has done the k pouch for over 35yrs...the reason that they stopped doing it (or that it fell into 'dissuse' ) was becuase the development and creation of the J pouch meant a much shorter surgery with few possible complications.
The J pouch uses that natural exit and therefore the creation of a anti-reflux valve is not necessary...it is the valve that makes the K pouch surgery so much more complicated to preform and more likely to require further surgery for complications such as valve slippages, twists or the pouch falling off of the abdominal wall.
Other than that, both pouches are essentially identical. It is just the exit strategy that is different.
Sharon
According to Dr Cohen of the Mt Sinai hospital in Toronto who is one of the first surgeons who has done the k pouch for over 35yrs...the reason that they stopped doing it (or that it fell into 'dissuse' ) was becuase the development and creation of the J pouch meant a much shorter surgery with few possible complications.
The J pouch uses that natural exit and therefore the creation of a anti-reflux valve is not necessary...it is the valve that makes the K pouch surgery so much more complicated to preform and more likely to require further surgery for complications such as valve slippages, twists or the pouch falling off of the abdominal wall.
Other than that, both pouches are essentially identical. It is just the exit strategy that is different.
Sharon
It's obvious that the first option should be to restore as much as possible the original "plumbing". If it doesn't work the K Pouch/BCIR is definitely the second option.
The BCIR really is not a proprietary surgical option, but just a type of continent ileostomy, considered an advance by some. You do not have to go to a "BCIR center" to get one, as some surgeons do it outside of those few places. It is not performed at very many hospitals, probably mostly due to a lack of surgeon training. Same goes for any continent ileostomy, since it has largely been replaced by the j-pouch over the last 20 years or so.
The reason why the j-pouch has become the "gold standard" for surgical treatment of UC and FAP? Basically, it is the comparative ease of the surgery itself and the high level of positive outcomes. Continent ileostomy is more prone to complications that require reoperation, so that is a big consideration.
Plus, there is a reason that the j-pouch is called restorative proctocolectomy. That is because of all the surgical options, it is the one that most closely restores normal function for elimination. You might think that body image is unimportant, but it can be a huge factor for many people.
There is no surgical option that completely restores you back to your normal function prior to when you were diagnosed, so you just have to figure out what is most important to you. For me, the j-pouch just made sense. Why throw away perfectly good sphincters and try to cobble together something that is sort of the same (continent ileostomy) if it is not necessary? Plus, you have to carry around equipment so that you can empty it. Continent ileostomies are also prone to pouchitis, same as a j-pouch. But, still, for those who are poor candidates for a j-pouch and do not want a standard end ileostomy, a continent ileostomy can be a good option. But, you need to be near a medical center that does them or be willing to travel, including for maintenance care.
As time goes on, they are finding that pouchitis is more likely the longer you have your pouch, and other complications can develop. It is quite possible that other options may be developed, but nothing really innovative has come along lately, other than better treatments to avoid colectomy in the first place.
Here is a link to a good article that explains the surgical options (a few years old, but pretty much covers it well):
http://www.google.com/url?sa=t...xbUQjCguYxjG6tUOLixQ
Jan
The reason why the j-pouch has become the "gold standard" for surgical treatment of UC and FAP? Basically, it is the comparative ease of the surgery itself and the high level of positive outcomes. Continent ileostomy is more prone to complications that require reoperation, so that is a big consideration.
Plus, there is a reason that the j-pouch is called restorative proctocolectomy. That is because of all the surgical options, it is the one that most closely restores normal function for elimination. You might think that body image is unimportant, but it can be a huge factor for many people.
There is no surgical option that completely restores you back to your normal function prior to when you were diagnosed, so you just have to figure out what is most important to you. For me, the j-pouch just made sense. Why throw away perfectly good sphincters and try to cobble together something that is sort of the same (continent ileostomy) if it is not necessary? Plus, you have to carry around equipment so that you can empty it. Continent ileostomies are also prone to pouchitis, same as a j-pouch. But, still, for those who are poor candidates for a j-pouch and do not want a standard end ileostomy, a continent ileostomy can be a good option. But, you need to be near a medical center that does them or be willing to travel, including for maintenance care.
As time goes on, they are finding that pouchitis is more likely the longer you have your pouch, and other complications can develop. It is quite possible that other options may be developed, but nothing really innovative has come along lately, other than better treatments to avoid colectomy in the first place.
Here is a link to a good article that explains the surgical options (a few years old, but pretty much covers it well):
http://www.google.com/url?sa=t...xbUQjCguYxjG6tUOLixQ
Jan
I know you're still on the fence about surgery. I'm assuming the fact that you're back posting means that you may have to make a decision sooner rather than later?
Not that I'm a fan of ANY surgery and multiple surgeries are not something I'd ever recommend, you should be aware that if you decide to go with a BCIR or k-pouch, there's no option of later trying a j-pouch. I think that you can go from a k-pouch to an ostomy though.
If you opt for a j-pouch and it doesn't work you can then convert to the other options (yes, more surgery). But there is over a 90% j-pouch satisfaction rate. Those are pretty good odds.
You should be able to do everything you've always done and more with any of the options. There is usually no urgency with a j-pouch. Life with UC and life with j-pouch/ostomy/k-pouch are completely different from one another. [Actually, I should quantify that - people with FAP often have no symptoms before they have surgery so it does make a bigger difference in their lives.]
If you think you'd like to go with a k-pouch, then go for it. It will be harder to find qualified doctors but it's definitely not impossible. And there are surgeons on the west coast who can perform the surgery.
Other than a perfectly functioning colon, all options have pluses and minuses. And I'm assuming that none of us will ever get back a perfectly functioning colon.
One of the best colorectal surgeons is in the Bay Area. I think you've already been to see her?
Good luck with your decision!
kathy
Not that I'm a fan of ANY surgery and multiple surgeries are not something I'd ever recommend, you should be aware that if you decide to go with a BCIR or k-pouch, there's no option of later trying a j-pouch. I think that you can go from a k-pouch to an ostomy though.
If you opt for a j-pouch and it doesn't work you can then convert to the other options (yes, more surgery). But there is over a 90% j-pouch satisfaction rate. Those are pretty good odds.
You should be able to do everything you've always done and more with any of the options. There is usually no urgency with a j-pouch. Life with UC and life with j-pouch/ostomy/k-pouch are completely different from one another. [Actually, I should quantify that - people with FAP often have no symptoms before they have surgery so it does make a bigger difference in their lives.]
If you think you'd like to go with a k-pouch, then go for it. It will be harder to find qualified doctors but it's definitely not impossible. And there are surgeons on the west coast who can perform the surgery.
Other than a perfectly functioning colon, all options have pluses and minuses. And I'm assuming that none of us will ever get back a perfectly functioning colon.
One of the best colorectal surgeons is in the Bay Area. I think you've already been to see her?
Good luck with your decision!
kathy
quote:Why is that? Is it just because the BCIR is not done at most facilities and by most surgeons? Or because of the "eeew" factor of having to intubate with a valve and tube (though no appliance)?
Bingo. I'm afraid that when it comes to striking gold here, keeping your colon intact is still the real jackpot.
Bad,
A little post scriptum?
If the J pouch would have exisited in those days and I would have had the necessary, functioning plumbing to have one...then yes, I would have definitely prefered a J pouch...in my case it was a no brainer.
There was no choice. I didn't have the sphincter (a must for a j pouch) and they hadn't invented them yet.
The good news is that either pouch can be converted to an end ileo if need be and as Kathy pointed out an unhappy J pouch can be converted to a K.
Sharon
A little post scriptum?
If the J pouch would have exisited in those days and I would have had the necessary, functioning plumbing to have one...then yes, I would have definitely prefered a J pouch...in my case it was a no brainer.
There was no choice. I didn't have the sphincter (a must for a j pouch) and they hadn't invented them yet.
The good news is that either pouch can be converted to an end ileo if need be and as Kathy pointed out an unhappy J pouch can be converted to a K.
Sharon
Converting from a j-pouch to a k-pouch MAY be possible, as long as you do not have a Crohn's diagnosis and that is why your j-pouch failed. Just wanted to make sure it was clear that there are no guarantees with this stuff.
But, it is true, once you go to a Barbie or Ken butt, there is no going back and deciding you want a j-pouch after all.
As to keeping your colon intact as a first choice, well of course! But, we would not be having this conversation if something was not leading you down the road to colectomy and the possible options. Colectomy generally should be thought of as a last resort...sort of. Everyone has their own threshold as to when to pull the trigger on this, and sometimes there is no other option, unless death is an option you find acceptable...
Jan
But, it is true, once you go to a Barbie or Ken butt, there is no going back and deciding you want a j-pouch after all.
As to keeping your colon intact as a first choice, well of course! But, we would not be having this conversation if something was not leading you down the road to colectomy and the possible options. Colectomy generally should be thought of as a last resort...sort of. Everyone has their own threshold as to when to pull the trigger on this, and sometimes there is no other option, unless death is an option you find acceptable...
Jan
Very good point Jan. I forgot about the Crohn's element.
Although there are members here who received a Crohn's diagnosis after having the j-pouch surgery and many of them are still doing well, typically a surgeon won't do j-pouch surgery on a Crohn's patient.
kathy
Although there are members here who received a Crohn's diagnosis after having the j-pouch surgery and many of them are still doing well, typically a surgeon won't do j-pouch surgery on a Crohn's patient.
kathy
Hi Folks,
I am a 9 year ileostomy vet. I have been really happy with my life. I do still struggle with body image. I am very healthy, i workout everyday but still...the bag
My husband and I want to start traveling now that our kids are older. I want to be free of this in a way. I feel selfish in even thinking about it. I think all for vanity Patty???? When I first had surgery they thought it was UC but after my bad colon was sent to pathogy they said indeterminate UC/Crohns. I never had any Crohns symptoms in the 20+ yrs of the disease, just bloody urgent diahreah. I was on meds but hardly took them in my teen years I rebelled against them when i should have been mad at the disease! So I feel that I had a part in my colon falling apart!
Due to dysplasia, the surgery was necessary.
So here i am 9 years later, constantly nagging my hubby..."what should i do?" and his response "i am fine with the way you are, it's what you want." UUGGG!
I have one doc that said he would do a jpouch on me but my surgeon said NOOOO, after I woke up from surgery and the inderterminate UC/Crohns dx messed things up. I was supposed to be reversed and then that happened. But he said at least you don't have cancer!? True but a bag...
SO I have been researching the BCIR and Jpouch. Trying to weigh things out, pros cons of both. I still have rectum left, doc saved it for possible reversal. Not sure why...since i still have to have that scoped for cancer.
I had some BCIR folks tell me that they felt the Jpouch was still like having UC without a colon??! But the 90% success rate.. And I have a fear of being left on a derserted island with no supplies to intubate and my belly blowing up, or a nursing home in the future with aides forgetting or not knowing what to do with me!! My mind wanders.
Also I have fears of surgery again..surgery that is elective at this point. My first go round was pretty tough. I spent a month in the hospital due to and ileus and blood clot. And the fact that things ended up permanent when i was expecting a reversal in 6 weeks through me into a huge depression. That was the hardest part/more than the surgery itself. I think the dilauded pain management didn't help. It messed me up i know it did. So hopefully i can get by with advil if surgery does happen again.
So sorry for the ramble, I know you guys are very compassionate. I have been visiting this board alot over the years and i am so glad it's here!
Patty
I am a 9 year ileostomy vet. I have been really happy with my life. I do still struggle with body image. I am very healthy, i workout everyday but still...the bag
My husband and I want to start traveling now that our kids are older. I want to be free of this in a way. I feel selfish in even thinking about it. I think all for vanity Patty???? When I first had surgery they thought it was UC but after my bad colon was sent to pathogy they said indeterminate UC/Crohns. I never had any Crohns symptoms in the 20+ yrs of the disease, just bloody urgent diahreah. I was on meds but hardly took them in my teen years I rebelled against them when i should have been mad at the disease! So I feel that I had a part in my colon falling apart!Due to dysplasia, the surgery was necessary.
So here i am 9 years later, constantly nagging my hubby..."what should i do?" and his response "i am fine with the way you are, it's what you want." UUGGG!
I have one doc that said he would do a jpouch on me but my surgeon said NOOOO, after I woke up from surgery and the inderterminate UC/Crohns dx messed things up. I was supposed to be reversed and then that happened. But he said at least you don't have cancer!? True but a bag...
SO I have been researching the BCIR and Jpouch. Trying to weigh things out, pros cons of both. I still have rectum left, doc saved it for possible reversal. Not sure why...since i still have to have that scoped for cancer.
I had some BCIR folks tell me that they felt the Jpouch was still like having UC without a colon??! But the 90% success rate.. And I have a fear of being left on a derserted island with no supplies to intubate and my belly blowing up, or a nursing home in the future with aides forgetting or not knowing what to do with me!! My mind wanders.
Also I have fears of surgery again..surgery that is elective at this point. My first go round was pretty tough. I spent a month in the hospital due to and ileus and blood clot. And the fact that things ended up permanent when i was expecting a reversal in 6 weeks through me into a huge depression. That was the hardest part/more than the surgery itself. I think the dilauded pain management didn't help. It messed me up i know it did. So hopefully i can get by with advil if surgery does happen again.
So sorry for the ramble, I know you guys are very compassionate. I have been visiting this board alot over the years and i am so glad it's here!
Patty
Patty, I can relate to your thoughts to convert from an ileostomy, but I only had a temporary ileo 33 years ago as part of Jpouch surgery, and was relieved when it was removed. One key to success with a Jpouch is having sufficiently strong and functional anal sphincters. You will want to have yours tested prior to considering a Jpouch. You should also be tested for Crohn’s, since this could be a condition that rules out either a Jpouch or BCIR. In my case, I had the Jpouch for 30 years and adapted the best I could to the frequency problems and butt burn, which in my mind was better than having an ileostomy. Things changed when my GI discovered high grade dysplasia in my anal canal and noted that my inner anal sphincter was very weak. I was fortunate in locating a surgeon (Dr. Ernest Rehnke in Florida) who performed a very successful BCIR surgery for me. I definitely did not want the bag and this decision was the best one for me.
Either procedure (including the closely related K pouch) can have post surgical complications which should be considered when making your decision. The first several months following my BCIR surgery were a bit challenging while my body adjusted to my revised plumbing, but since then, I have been able to lead a pretty normal life. I empty the pouch at my convenience 3-5 times a day, have no leakage whatsoever, and no one knows I have it unless I tell them. Please feel free to PM me if you would like more information about my experience with either procedure.
Bill
Either procedure (including the closely related K pouch) can have post surgical complications which should be considered when making your decision. The first several months following my BCIR surgery were a bit challenging while my body adjusted to my revised plumbing, but since then, I have been able to lead a pretty normal life. I empty the pouch at my convenience 3-5 times a day, have no leakage whatsoever, and no one knows I have it unless I tell them. Please feel free to PM me if you would like more information about my experience with either procedure.
Bill
If working properly, J-pouch allows you to function "normally", while the bcir or k-pouch needs a catheter.
My daughter's pediatric GI, who is the director at a large children's hospital, said they do not send many folks to J Pouch surgery these days, and really, really, really exhaust medical treatment unless the surgery is absolutely necessary. The rates of those getting J pouches there is decreased.
They know it can decrease a woman's fertility, so they try to push past those years if they can (so she can start a family). And also, with all the stuff they're learning about the colon and immunity,etc., that's also a reason to push to remission, rather than removal. The med treatments are way more varied these days then when I was pushed to the end of the line in 1990-91.
However, sometimes removal is the only option, and I'd definitely go J pouch over BCIR as a first choice any day, for many of the reasons listed.
They know it can decrease a woman's fertility, so they try to push past those years if they can (so she can start a family). And also, with all the stuff they're learning about the colon and immunity,etc., that's also a reason to push to remission, rather than removal. The med treatments are way more varied these days then when I was pushed to the end of the line in 1990-91.
However, sometimes removal is the only option, and I'd definitely go J pouch over BCIR as a first choice any day, for many of the reasons listed.
I'm sorry that I didn't keep my bag.
Pouchitis is not for the faint of heart! Stay healthy and keep your bag.
PS I worry that when Im in a nursing home or lose my mind that no one will know how to manage this pouch.
Pouchitis is not for the faint of heart! Stay healthy and keep your bag.
PS I worry that when Im in a nursing home or lose my mind that no one will know how to manage this pouch.
quote:PS I worry that when Im in a nursing home or lose my mind that no one will know how to manage this pouch.
Ally, I worry about this too... my mom says I'm crazy... I think if it came to that I would ask for a traditional ileostomy, TONS of patients in nursing homes have ostomies and the staff manage them fine
Well see this is the problem, do I want more surgery in my 70 or 80 if I live that long or do it now in my early 60 when I still have the strength.
I would definitely wait to get an ileostomy until it was necessary. Having surgery to avoid a fear of something that may not happen just seems wrong to me. At least in my case, It is far more likely that I would lose the ability to manage an ileostomy myself due to arthritis long before I would need to be in a nursing home. Plus, I think that most of the ostomies that are dealt with in nursing homes are colostomies, which are FAR easier to manage than ileostomies. There is less instance of leaks with burned skin, less need to empty, and the stool is thicker. Nursing homes are generally not skilled nursing, but custodial care.
But if you need an ileostomy now and are trying to talk yourself into it, then that is another story.
Jan
But if you need an ileostomy now and are trying to talk yourself into it, then that is another story.
Jan
Does anyone know how they test for CD once your colon is removed. Is it the camera you swallow to look at the small intestine or the prometheus test? I know a couple years ago I had the spinchter test done, I would probably have to do it again because I chickened out of surgery. I feel like I am on a cliff and want to jump but i cant! I know my problems are small compared to others. I am happy to be healthy!
I agree - the pouch is boss, while you are boss of the bag. Remember that. I'm at my wits end with my fistulizing pouchitis... It's taking a toll on my family of course and I can't sleep at night worrying about my health to day! I married and have lived without a bag for 33 years and remember the one year before surgery, while I had a bag as a good, healthy one. Then years of pouchitis, incontinence, but burn.... pain...etc. Think carefully - some people can't see a darned thing without their glasses, some people need a bag....Some people are going to need a bag...
hichik have you looked into the bcir?
@rechelraven,
I haven't seen any real alternative to the J-Pouch WRT available surgery. As far as meds go, there really isn't that much new for UC. Numerous biologicals are undergoing clinical trials, but (and I have tried at least four of them) they seem to either not work or your immune system finds ways over time to get around them, ie. they stop working. The jury is out on fecal transplant.
Most of the drugs treatments end up with 5asa and steroids. I was on steroids for years and developed Cushings Syndrom (and got to 107kg). Should add that the steroids were no longer working, ie. I was steroid refractory. After coming off the steroids my bone mass is fine, the Cushing Sydrome symptoms have largely disappeared and I lost 30kg. I also lost a large intestine which I'm sure weighed a couple of kilograms so not all down to the steroids. My point is that you can run out of options after some time and, other than clinical trials, there isn't much new on the market so surgery is the only option. I resisted surgery for years and was housebound, literally, for the last couple of years before surgery. BUT I realised that the closest thing to 'normal' was the J-Pouch. 4-8 BMs a day would be a relief as long as there was an element of control. That's what I'm looking forward to.
I haven't seen any real alternative to the J-Pouch WRT available surgery. As far as meds go, there really isn't that much new for UC. Numerous biologicals are undergoing clinical trials, but (and I have tried at least four of them) they seem to either not work or your immune system finds ways over time to get around them, ie. they stop working. The jury is out on fecal transplant.
Most of the drugs treatments end up with 5asa and steroids. I was on steroids for years and developed Cushings Syndrom (and got to 107kg). Should add that the steroids were no longer working, ie. I was steroid refractory. After coming off the steroids my bone mass is fine, the Cushing Sydrome symptoms have largely disappeared and I lost 30kg. I also lost a large intestine which I'm sure weighed a couple of kilograms so not all down to the steroids. My point is that you can run out of options after some time and, other than clinical trials, there isn't much new on the market so surgery is the only option. I resisted surgery for years and was housebound, literally, for the last couple of years before surgery. BUT I realised that the closest thing to 'normal' was the J-Pouch. 4-8 BMs a day would be a relief as long as there was an element of control. That's what I'm looking forward to.
allykat who says you are headed for a nursing home??or going to lose your mind!!!! seriously we need to take this one day at a time..i have enough trouble figuring out how to manage what i got now!!! what ifs should be a no no or off limits for us..got to give ourselves a break..
Kevin,
There are indeed more treatments available these days than in the past. I was only given Azulfidine and steroids, and started my journey in 1982.
Yes, a lot of medical treatment does have limiting time frames, you're right, and not everyone gets remission from them... but what her docs are saying is they push for a lengthier time to keep the colon than rush to surgery. HOWEVER< they were quite clear to say that they are more aggressive with Crohn's than with true documented UC, and that may be the mindset of many, and why Crohn's seems to have "more" treatments out there than UC at times. They still see the Crohn's umbrella as more "aggressive" itself, because of it's more likely ability to attack more parts of the GI tract.
She is on Humira, and now they give an immunomodulator (in her case, Methotrexate) to help the body lessen its buildup of antibodies while on an biologic. This started in the rheumatology world, and has crossed over to the GI world, because it is allowing people longer runs on biologics.
They didn't say they DIDN'T do surgery on UC patients; obviously, they do. But there was a past time when they told people (like me, in 1991) that a J pouch was a CURATIVE surgery for UC, and pushed people there more quickly. My GI, who only focuses on IBD patients, says that they never tell people that now. They counsel people needing surgery about the J pouch as having a 50/50 chance that you will still continue to have issues (ie. pouchitis or what have you), and even if you fall into the "other" 50, that you may STILL have issues down the line.
I'm currently going through stuff after 20 very healthy years with my J pouch. I told my GI it's like having "UC light." It's not that I have all the issues from then; but I have a C-reactive protein that is elevated, issues with low grade temps, a peri-anal abscess turned fistula with a seton drain, fatigue, tenesumus, anal pressure and pain ... things are happening that didn't happen in the past.
He said that "old" pouches are coming to him with similar complaints, and they now think there's some genetic trigger going on, that it might not necessarily be "Crohn's," but another IBD thing (like, you can take the colon out of the girl, but not the genetics). He said "old" pouches on pathology reports read as "colon," so maybe the body is triggered to attack the pouch again, as it did the colon? It's not clear, but he said I'm definitely not alone in this, and he's seeing many people coming to him, later on, with similar issues.
A straight up ileostomy would avoid this stuff, and you know, had I been offered surgery now, even with the 50/50 chance, I'd probably have still taken the J pouch over the permanent ileostomy... maybe. But living with my loop ileostomy was easy, and I told my mom back there that I'll never be afraid to return to one, if I have to. But so far, even with my issues, I've not exhausted things.
I believe he is thinking of starting me on Humira, to help the fistula, maybe, and also work on the auto-immune things going on with my pouch. We shall see. I have my EUA on 9/15.
There are indeed more treatments available these days than in the past. I was only given Azulfidine and steroids, and started my journey in 1982.
Yes, a lot of medical treatment does have limiting time frames, you're right, and not everyone gets remission from them... but what her docs are saying is they push for a lengthier time to keep the colon than rush to surgery. HOWEVER< they were quite clear to say that they are more aggressive with Crohn's than with true documented UC, and that may be the mindset of many, and why Crohn's seems to have "more" treatments out there than UC at times. They still see the Crohn's umbrella as more "aggressive" itself, because of it's more likely ability to attack more parts of the GI tract.
She is on Humira, and now they give an immunomodulator (in her case, Methotrexate) to help the body lessen its buildup of antibodies while on an biologic. This started in the rheumatology world, and has crossed over to the GI world, because it is allowing people longer runs on biologics.
They didn't say they DIDN'T do surgery on UC patients; obviously, they do. But there was a past time when they told people (like me, in 1991) that a J pouch was a CURATIVE surgery for UC, and pushed people there more quickly. My GI, who only focuses on IBD patients, says that they never tell people that now. They counsel people needing surgery about the J pouch as having a 50/50 chance that you will still continue to have issues (ie. pouchitis or what have you), and even if you fall into the "other" 50, that you may STILL have issues down the line.
I'm currently going through stuff after 20 very healthy years with my J pouch. I told my GI it's like having "UC light." It's not that I have all the issues from then; but I have a C-reactive protein that is elevated, issues with low grade temps, a peri-anal abscess turned fistula with a seton drain, fatigue, tenesumus, anal pressure and pain ... things are happening that didn't happen in the past.
He said that "old" pouches are coming to him with similar complaints, and they now think there's some genetic trigger going on, that it might not necessarily be "Crohn's," but another IBD thing (like, you can take the colon out of the girl, but not the genetics). He said "old" pouches on pathology reports read as "colon," so maybe the body is triggered to attack the pouch again, as it did the colon? It's not clear, but he said I'm definitely not alone in this, and he's seeing many people coming to him, later on, with similar issues.
A straight up ileostomy would avoid this stuff, and you know, had I been offered surgery now, even with the 50/50 chance, I'd probably have still taken the J pouch over the permanent ileostomy... maybe. But living with my loop ileostomy was easy, and I told my mom back there that I'll never be afraid to return to one, if I have to. But so far, even with my issues, I've not exhausted things.
I believe he is thinking of starting me on Humira, to help the fistula, maybe, and also work on the auto-immune things going on with my pouch. We shall see. I have my EUA on 9/15.
Hi RachelRaven,
Thank you for your lengthy and considered reply. I think we are basically on the same page. My point was simply that there is a finite number of options even with clinical trials that eventually run out. I also agree that avoiding surgery is where a number of practitioners are, I avoided it for 27 years. My big fear was that surgery was final, there's no going back and that a 'cure' would be discovered soon after I took the plunge (I'm also a coward, I don't do pain yadah yadah). Anyway, ended up with Pan Colitis and out of options.
I'd done the Humira, vedilisimab, two more other something-imabs and finally tachrolimas. None of the usual suspects did anything anymore and many years of high dose steroid use had taken its toll. Now off steroids for well over 18 months. I have zero something response, ie. do not produce adrenaline when required so on low dose hydrocotizone (not cortico steroids).
So surgery and not really a bag person. Have takedown now schedule for 15 October 2014. Surgeon is optimistic, says my 'pouch' is in good nick and has healed extremely well. I did the leak test yesterday (they fill you with a fluorescent liquid and take x-rays), seemed OK.
I know I will have to 'learn' to use the pouch, but, as noted, 4-8 BMs a day would not be an issue at all.
I am saddened to see the trials you have been through and especially saddened to see your daughter has symptoms. Obviously there is some genetics at play (I was always told noone really knew the cause of UC, but it is suspected that a bowel infection is the trigger). Obviously there is some genetic pre-disposition as is evident in your case.
Good luck with your treatment. As you say, you haven't exhausted options and the fall back position is the ileostomy.
Thank you for your lengthy and considered reply. I think we are basically on the same page. My point was simply that there is a finite number of options even with clinical trials that eventually run out. I also agree that avoiding surgery is where a number of practitioners are, I avoided it for 27 years. My big fear was that surgery was final, there's no going back and that a 'cure' would be discovered soon after I took the plunge (I'm also a coward, I don't do pain yadah yadah). Anyway, ended up with Pan Colitis and out of options.
I'd done the Humira, vedilisimab, two more other something-imabs and finally tachrolimas. None of the usual suspects did anything anymore and many years of high dose steroid use had taken its toll. Now off steroids for well over 18 months. I have zero something response, ie. do not produce adrenaline when required so on low dose hydrocotizone (not cortico steroids).
So surgery and not really a bag person. Have takedown now schedule for 15 October 2014. Surgeon is optimistic, says my 'pouch' is in good nick and has healed extremely well. I did the leak test yesterday (they fill you with a fluorescent liquid and take x-rays), seemed OK.
I know I will have to 'learn' to use the pouch, but, as noted, 4-8 BMs a day would not be an issue at all.
I am saddened to see the trials you have been through and especially saddened to see your daughter has symptoms. Obviously there is some genetics at play (I was always told noone really knew the cause of UC, but it is suspected that a bowel infection is the trigger). Obviously there is some genetic pre-disposition as is evident in your case.
Good luck with your treatment. As you say, you haven't exhausted options and the fall back position is the ileostomy.
Kpouch was the pouch to go to then jpouch came around. More people move to the K or BCIR when their jpouch pisses them off. I am glad I got the BCIR over the J.
if you are doing well and the issue is vanity i get it big time(and i never had a bag )..but i like allykat think when pouch does`t work well it can be a form of hell......recently i actually had a melt down..ready to just stay in bed,not eat because if i did not eat, nothing would be going on..i felt i needed peace..i was i thought ready to just stay that way and die..if not for my besides himself husband
forcing me to drink a fruit drink and 24 hours sleeping on and off..
the high rate of pouch success (people who are satisfied) can be an inflated number because the success can change at any given time for
anyone..my new doc in l.a said problems with j pouches in his experience were more like 25 per cent not 10 per cent..
i say if you are functioning well stay the way you are..just my opinion..
forcing me to drink a fruit drink and 24 hours sleeping on and off..
the high rate of pouch success (people who are satisfied) can be an inflated number because the success can change at any given time for
anyone..my new doc in l.a said problems with j pouches in his experience were more like 25 per cent not 10 per cent..
i say if you are functioning well stay the way you are..just my opinion..
My GI said he counsels his patients going for J pouches that there is a 50/50 chance during the lifetime of your pouch that you may have *some* problem. That problem isn't necessarily one to necessitate removal (could just be a round of pouchitis), but that that's what he does now.
Hi Patty.
I'm wondering what you decided to do. Did you keep your long-term, well-functioning ileostomy or go for the J-pouch or BCIR? I had UC for years and when I was 29 I had the colectomy and got the j-pouch. At first I wanted the ileostomy because I just wanted to be rid of the symptoms, but the docs talked me into the j-pouch, saying it was the best quality of life. Well, I had pouchitis almost immediately and for whatever reason was incontinent, especially when sleeping. During the day there would be a tiny bit of leakage but I was always fighting it and it burned like hell. At night was the worst and most disgusting. I couldn't go on like that. The docs feel that the muscle wasn't functioning or was damaged during surgery.
I then decided to get the BCIR, which is what I've had since 1999. I still have it, but have pretty chronic pouchitis, severe anemia and vitamin deficiencies, a couple of minor blockages, etc... Those are the evils that I know though and I can deal with them. I consider them maintenance, although unpleasant and tiring. Carrying around a catheter and coverings is also a pain.
The issue is that now I'm having a new pain which is breaking me. It feels like a stinging, aching ulcer just under the stoma site, about an inch or two in. I've had scope exams, an endoscopy and a ct scan so far and all they see is some irritation/pouchitis. This feels way worse.
Truthfully, I wonder what it would be like to have the ileostomy. While I'd have an outside appliance, I wouldn't need a catheter to go. I wonder daily if it's worth it to get rid of the chronic inflammation.
I have a high school friend who had a failed J-pouch, then an ileostomy and now the BCIR with no issues. She hasn't even had pouchitis once. Pouchitis is hell.
There's my 2 cents from someone who's had a j-pouch and currently has a BCIR. I also had a temporary ileostomy as my BCIR was done in 2 stages, but the temp ones aren't very good because they barely come out of the skin and therefore lead to a lot of skin irritation.
What did you do?
Jan Dollar posted:I would definitely wait to get an ileostomy until it was necessary. Having surgery to avoid a fear of something that may not happen just seems wrong to me. At least in my case, It is far more likely that I would lose the ability to manage an ileostomy myself due to arthritis long before I would need to be in a nursing home. Plus, I think that most of the ostomies that are dealt with in nursing homes are colostomies, which are FAR easier to manage than ileostomies. There is less instance of leaks with burned skin, less need to empty, and the stool is thicker. Nursing homes are generally not skilled nursing, but custodial care.
But if you need an ileostomy now and are trying to talk yourself into it, then that is another story.
Jan
HI Jan,
I could not figure out how to reply to you directly. I am new to the forum and want to thank you for all you and others have done to help so many of us J pouchers. If you don't mind me asking, do you have a pouch? If that is not something you wish to answer, I understand. I've had the pouch 29 years - ups and downs, etc. - but it was the only option then. It caused me to be infertile. I love how my niece and nephew who have FAP are going to be scoped for longer and yes, try to have babies if they want them, prior to surgery. Also love that they are leaving more rectum and doing the surgery via laperascope - sorry - don't know how to spell that. I'm hoping this gets easier for each generation and that one day we will have meds or genetic methods to end j pouches forever
Thanks for all you do for all of us out here in j pouch world.
Yes, I have a j-pouch. I had my surgery in 1995 due to uncontrolled UC.
Jan
Jan - you are wonderful - pouch or no pouch. A nurse to boot. I was a teacher and counselor. It does help that you get the pouch thing, but you'd be out trying to help others in some capacity no matter what your situation. Thanks for your kind replies and I promise I won't bug you. I feel a tremendous amount of gratitude to you and those who started this forum - please know you are appreciated. Don't feel you need to reply - I bet this place wears you out. I get that Yes, this too shall pass. Such is life
Hi Patty,
I have a question for you regarding the pain that you are having with your stoma...(and please do not hesitate to repost the question on the K pouch section or this forum)...have they checked for a peri-stomal hernia?
It can hurt and burn like a cigarette burn or be a long-dull, constant pain depending on how big it is and where it is situated along the stoma.
When I started having stoma problems in 2007 (post k pouch redo in 2000 and 2004) they never thought about it...Even when I started having problems intubating and then leakage...after a while they just told me that my valve was the problem and the pouch would have to go...never thinking to look elsewhere (when there is pain or a problem with the valve they Only think that it is the valve)...in the end it turned out to be a hernia of the muscle holding the valve/stoma in place (we sort of figured it out when my whole stoma popped out and I took pictures to send to the surgeon)...
I have had it fixed 5xs in all...3 times with open surgery including moving the stoma twice...finally a very nice non-k pouch surgeon decided to try something 'different' and placed a flat doughnut of mesh around the stoma and under the pouch, flat against the abdominal wall...and that did the trick (it was a 1hr laproscopic surgery and I was home in 3 days)...
When they do not give you satisfactory answers you need to ask different questions...
Good luck
Sharon