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Does anybody out there have a continent ileostomy?

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Posted: Wed Dec 26, 2007 10:10 pm
I had an ileostomy in April 1983, then in October 1987 I had a (BCIR) Barnett Continent Ileostomy! Does anybody out there have one? I was in Mississippi and met 2 people; however, I cannot find them? Freka and John Busan?

Posted: Fri Jan 09, 2009 9:51 pm

I have a Kock Pouch - which means I have a stoma, but part of the small instestine was used to make a pouch and a nipple valve.I don't know how this differs from yours.

The biggest problem I have with it is the limitations on when I eat certain foods.I can eat almost anything, but some things exact a heavy toll!And some things just create too much gas and residue that I have to eat them early in the day if I want to have a peaceful night.

How does your continent ileostomy work?

Posted: Fri Jan 09, 2009 10:00 pm
I have a Koch pouch which is more or less the same as a BCRI.Have the same problems as Dig in previous post.I had an ileostomy due to UC in 1970 and the Koch procedure done about three years later. I have been fortunate with the pouch with no structural problems.I think we are a rare breed. I have never met another person with a continent ileal resvoir.


Posted: Fri Jan 09, 2009 11:42 pm
Well there you go!...knew this was a great site for info...I have not even heard of it before.Would someone please explain whats the difference...as I am now very curious..and no I dont want to go online and check it out,rather hear it from some one who is dealing with it.As far as I know,I have a (if there is such a thing) normal ileostomy...two out-put zones and Bob's your uncle...I know I have more(op's) in store somewhere down the track...so any info I can pick up along the way isgoing to help....thanks TarababyCool

Posted: Sat Jan 10, 2009 12:48 am
I've had a BCIR for going on 4 years. After 18 years with an ileostomy. This was the best decision I have ever made. Though i was thankful for having the colectomy because it saved my life, I didn't realize how much of my life it limited.
I'm still adjusting to my body and how it functions, but I don't regret my choice to have it done.

Posted: Sat Jan 10, 2009 6:13 am
Ms. Menia wrote:
I've had a BCIR for going on 4 years. After 18 years with an ileostomy. This was the best decision I have ever made. Though i was thankful for having the colectomy because it saved my life, I didn't realize how much of my life it limited.
I'm still adjusting to my body and how it functions, but I don't regret my choice to have it done.

Your words are very good to hear.I'm in the UK and had an ileostomy also done as an emergency when my bowel perforated December 2006.
I'm scheduled for my back passage removed some time in the next 12 months so the ileostomy is going to be a permanent feature! I've been speaking with my surgeon recently regarding having the BCIR operation and they are keen but have told me about certain problems that was putting me off.I have many months to decide for sure, but it is interesting to hear you are pleased with your decision. Smile

Posted: Sat Jan 10, 2009 10:32 am
Hi Curly,
Good morning.
I just wanted to re-interate on my surgery. I had it done in February of 2005, almost 18 years to the day that I had to have my original ileostomy. It's by far not perfect and you have to follow most of the care intructions given to you especially in the first 6-12 months while it's healing, but I learned while going through my recovery from talking to others who were there for just a repair that most of the scary stuff they tell you isn't true. You can basically eat whatever you want once your pouch has grown to capacity and healed. The first year I rarely ate fruit or vegetables, didn't do lots of dairy, practically cut out carbonated drinks. but in february of 2006 i started re-introducing things to my diet. What you can eat depends on how your body is feeling at the time and many time you want to re-insert your catheter. Cause some foods don't breaks down well and can clog it during draining the pouch. But, I have myself on a 12-14 hour intubation schedule, I eat based on how my stomach feels. if it feels gassy I either use moderation or stay away from foods that will cause it to feel worse for that day. If I eat something that really affects me, I just don't eat that again. But I've found that I can eat everything I ate before I had the BCIR done. I think the most unfortunate part of our issues on ostomy care no matter which type you have is that most of those instructing us on how to care for it don't have one so they are instructing us based on book knowledge and not actual experience. Don't misunderstand me I'm not knocking them because they are a blessing and I thank God for their desire to help us cope with what could be a devastating experience, but the way our body's capabilities are far greater than the textbook allows of us. I love bacon, mushrooms, corn... I've not been big on soda pop for years, but every now and then crave it and will have it. I eat icecream, popcorn, chew gum, drink from a straw. It's all up to you, how your body is reacting any given day and how much time you want to spend in the bathroom when you intubate.
Again it's not all peaches and cream. As I said I'm still learning how my body functions and sometimes it's not pleasant. But overall, I wouldn't change a thing!!

Posted: Mon Nov 22, 2010 8:31 am
Not sure what all these terms mean, especially, "a continent ileostomy", all I know is I have an "incontinent ileostomy". I hardly dare to eat when I'm in company (read my blog). Until I came across this site about 6 weeks ago, I felt like a freak of nature, now I know there are many others in my situation,in fact, quite extraordinary people, full of humour and compassion when anyone is in need of a shoulder to cry on, and ready to comfort and advise . I for one, will never again feel "on my own", and I learn something everytime I log on.

Posted: Mon Nov 22, 2010 1:46 pm
I hope I manage to explain this clearly for anyone who knows little about anatomy;

Technically it is a challenge for surgeons because they believe you can live a more than normal life with a Continent Ileostoma.
Practically I can give you loads of examples why you should NOT opt for this "optical solution".

What is it?
Part of your small intestine will be cut into strips. We are going to sew a pouch out of these strips.
But, our intestine moves like a worm into ONE direction. We don´t want this pouch to expel its contents, so we have to cancel this one way traffic effect.
How can we do this? Simple: by turning around every second strip which results in one movement up and one movement down. If you step forward and backward one step. you don´t advance. The same thing will happen with our new pouch. Nothing will come out by itself.
Result: we are no longer incontinent.

From your abdominal skin the surgeon will construct a little tunnel into your belly.
This tunnel will be your "valve" to empty the internal pouch.
So you will no longer have a baggy and you will be very sexy again (?)
If you need to "go", you will have to stick a tube into your belly to let the contents out.
Sounds very simple and neat & tidy.Wonderful solution for who feels frustrated about his/her looks.

Of course, if you want to be sexy, not have a noisy plastic baggy, you will have to pay a price for this.
What is the price?
A lot!!!!!!You can no longer accidentally swallow a peanut, or not chew your food sufficiently, because IT WILL NOT COME OUT THROUGH THE TUBE.
There you go. Can you feel the anxiety building up? Great opportunity for attention seekers, but believe me, you don´t want to go there.
I will not list all the other things you can no longer eat, or what happens to you if you forget to bring your bloody tube (and your pouch keeps growing and growing inside your sexy belly)

Many continent internal pouches fail for various reasons. Leaking stitches, infections, ulcers, Crohn´s or UC induced inflammations, etc.
Many people who seem to have CU, continue with problems in the small intestine despite not being diagnosed with Crohn´s. Specialist notoriously want to separate both IBD´s.
The MAJORITY of these procedures FAIL !!!!!!!!!But your surgeon will not tell you about all the failures.He needs to operate, to pay for his 2 or 3 mansions and 4 luxury cars. I may sound cynical, but sadly enough surgeons are very economical with the truth to protect their salary (wouldn´t you?)

If I would be your surgeon, I would only offer you this option if the rest of your intestine is 100% healthy, and if you have 100% healthy teeth, and if you are willing to eat semi liquidated food (put your 3 course meal in a blender).
Did you ever eat a dish of mashed potatoes without drinking? You have to squeeze it out of your baggy. How are you going to squeeze this out of your belly through a narrow tube?

When it fails, you basically loose a lot of your small intestine, and you will get a new permanent ileostomy with a baggy.
AND you are at risk for Short Bowel Syndrome.

Of course, there is always someone who has nooooooooo problems at all.
Like my grandfather who started smoking when he was only 13 years old and he died of exhaustion when he was 93, while most of us die of lung cancer or cardiovascular disease.
So, listen to the figures, which are bad.

Try to avoid it. We will love you just the same when you have a baggy.
And those who don´t are not worth crossing your path.

Live your life to the max.

me, Richard

Posted: Mon Nov 22, 2010 2:17 pm
Thanks so much for all this information, it is very timely for me. I have been dealing with making a decision on this and really needed more information. So appreciated.

Posted: Mon Nov 22, 2010 3:39 pm

Posted: Mon Nov 22, 2010 6:33 pm
I am not sure where you have gotten all of your information for your post, and I find it misleading to those people who might be considering a BCIR or Kpouch.

I have a BCIR myself, and did a lot (years worth) of research before I had it done.
There have been studies done of failure rates of BCIR and Kpouches and the results were that they majority of them do NOT fail, like your post states. There is actually a low failure rate to both procedures.

In addition, after the initial 3 month healing period, you should be able to eat whatever you ate before. They tell you to stay away from mushrooms and pineapple, but some people with an ostomy avoid those foods anyway. The tube is a 30 french, which is quite big and allows contents to flow out well. If the output is thick, such as if you didn't chew well enough, or eat thicker foods like you suggested (mashed potatoes) then you can just irrigate the pouch with water, and it just flows out. Might take an extra minute or two, but it does the job. Smile
As far as what do you do if you forget the tube, you go to a hospital or any medical supply place to get another one, just like you would have to do if you forget your ostomy supplies.

I am a nurse, had an ileostomy for 13 years, along with a host of other medical problems including a spinal fusion. My back and stomach look like road maps with the number of scars that I have. I have never had a problem with the scars or the way my body looked, and did not get the BCIR to "be very sexy again". Not everyone who has the BCIR or Kpouch is "frustrated by his/her looks". This is a stereotypical view in MY opinion.

Just like with any surgery, yes, there complications, like some of the ones you mentioned. However, there are always risks with any surgery.

I do not mean to be rude in this post in any way, it is just you struck a nerve with me as your post was so negative. There is nothing wrong with having an ostomy, I had one for 13 years. However, just because an ostomy is the choice for some people doesn't mean it is the right choice for ALL people. Some people are not even candidates for BCIR or kpouch. With that being said, everyone has the right to make their own choice, and it should be an informed one.

Just presenting the other side of the picture,

Posted: Tue Nov 23, 2010 1:38 am
Florrie, Don't sufer in silence. Have you let your consultant & stoma nurse know about the problems your having? Are you taking any drugs to slow the output down? for high output stoma's "Immodium syrup" is very good it's fast acting, with Dr'sadvice you can take a few drugs at once to slow your output down, take them 30 - 60 minutes before you eat.
A dieationn might be able to give you some help some help as well. In the UK we have a few specialist units that specialise in helping people with high output ostomy's so don't give up. Keep nagging your consultant & stoma nurse.

Posted: Tue Nov 23, 2010 4:39 am
Thanks Panther, I didn't know there was an Immodium Syrup, been on the capsules and tablets, but they didn't have any effect, was told to eat "little and often", but that's easier said than done, in the evenings I can be emptying every half hour.... or else! Do men have a larger sized stoma bag than us ladies, was just wondering how long would it hold a pint?!

Posted: Tue Nov 23, 2010 7:40 am
Immodium Syrup works much better with high output stoma's. If it dosen't work for you there aremore things to try. Men and women have the same bags, there are mini, midi, maxi. It should say on your box which size your using. You can get some bags, almost the same as urostomy night drainage systems. You have a tube to connect to the bottom of your bag that connects to another bag on a stand, I don't like them but you might. There worth trying to save you having to get up so you can get some more sleep. If you want to try them you need to see your stoma nurse to choose witch ones.
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