K Pouch vs. Bag for Ileostomy Surgery - Advice Needed

Hi everyone 

I haven’t posted in a while, but I have been around learning and gathering information for my upcoming ileostomy surgery. 

I just learnt about the K pouch and I’m wondering why I would opt for a bag if I can have a k pouch? 

To be clear, a K pouch was not offered to me by my medical team, but I’m wondering if I should bring it up with my surgeon and ask him if that’s an option? 

Do any of you have experience or know anything about the pros and cons of a K pouch? 
Is this often an option not offered by surgeons? And is there anything I should know before asking my surgeon about it? 

Thanks 

Clara 

Hi.  I had a k pouch for 6 years and the tube slipped a lot. Maybe it was the surgeon though

From what I have learned from the members here is that most internal pouches fail, sadly, over time. Plus, there's a risk of infection.

Do you have any pre-existing health issues that would give pause for a K or J pouch?

My understanding is that a K pouch, Koch, uses a catheter. I don't know how someone can hide that hose or clean it when done. 🤮 But people do it. They use it.

J pouches fail quite often. I have heard those stories.

K pouches? The jury is still out.

You should ask your surgeon what other options than a bag are there for you.

It can't hurt. Plus, it shows you already know the answer to smack him with.

I believe you will need a doctor versed in K pouch surgery.

 

Good luck deciding.

Hi Joe.  6 years? Then what happened? What was done next?

Had 2 revisions then elected to get external pouch

Words of Encouragement from Ostomy Advocates I Hollister

Aah... so you experienced both sides of the coin. What's your feeling about "having been there done that" compared to now as a bagger? Better? Worse? Happier?

Hello ClaraD.
Before I had my operation I had been reading about K pouches and thought they were a good idea, so I asked my surgeon about them.
He was adamant that he would not do that operation because the failure rate was far too high and I was not a good candidate. Having experienced medical failures before, I could appreciate what he was saying, so I opted for a straightforward colostomy.
My feeling is that there is no harm in asking, and if those failure rates are still as they were when I asked, then your surgeon should be aware of that.
I hope this helps with your decision making.

Best wishes

Bill

I am not eligible for a J pouch, I was told to go with a permanent ileostomy but I’m not happy about it at all. On the contrary the whole idea disgusts me… I came across this now and think it may be easier to deal with but want to hear more before speaking to my surgeon. 

I’m sorry to hear it didn’t work for you. Do they know why it failed? Was it a condition you have that caused failure or something else?

Thanks for your reply. It's interesting that you discussed it with your surgeon and he advised against it. I wonder what the criteria for successful surgery are.
May I ask how many years ago this was?

It's worth asking your consultant about, and you might have to travel some distance if it's an option to see a surgeon who is a specialist in K pouch. I know the Q.E Hospital Birmingham, John Radcliffe Oxford, and I think Edinburgh do them, to my knowledge, and maybe a few more.

@Clara...you have every right to ask and be informed of all options.

 

You are lucky to have the time on your side to do this inquiry.

Most of us had no time to do this. Emergency situation.

Some of us, like Bill, had medical issues that may have caused failure if undergoing these pouches.

Myself included. Crohn's disease.

Yes, I agree wearing and caring for a bag is disgusting. But we get over that saying it saved our life.

Then you ask yourself, "Is this life?" But then I also think, it's about survival, and there are people worse off than having a bag too. Over the last 8 years, I have spoken to some incredible people who weren't so lucky, in my opinion, yet they are living life and got over it.

Living la vida loca.

Taken from a guy here, he says it's all about mindset (waves to Alex). 👋...

Be informed about options.

Day by day. It's a thing. I don't even think about this shit bag anymore. Amazing what you can adjust to. Good, bad, different.

You got this, kiddo.

 

 

Hello ClaraD.
I believe my surgery was 2011, which would make it approximately 13 years ago.
Best wishes

Bill

The catheter on a K pouch is removable, so it’s only there when you need to use it. So the person only has a very small stoma that is hardly noticeable… no bag, no bump, nothing. 👍