K pouch J pouch BCIR

Replies
2
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144
Past Member
Aug 18, 2024 2:44 pm

It makes me angry that there aren't more options for ostomies. I had a ileostomy for 12 years when I discovered the BCIR. I've had an internal pouches for 30 years and it's been the best thing that ever happened to me. No more bags or accidents or embarrassment. 

The doctor who performed my BCIR retired and it seems nobody does them now.  The Koch pouch is very similar but it seems doctors don't want to take the time.  It's easier for them to to slap a bag on and forget about you. That may sound harsh but quality of life is 1000 times better without a bag.

If you're having a really hard time I suggest you talk to a doctor about revising your ostomy.  I've never regretted it

Mrivera8
Aug 18, 2024 5:11 pm

I had a j-pouch for a few years but also had severe strictures in my bottom which prevented me from being able to empty so I ended up needing to get a resection and a permanent ileostomy. Before the resection, I did some research and discovered the K pouch! I thought it was a perfect solution but my surgeon told me I’d be high risk for Short Bowel Syndrome so I opted for the ileostomy.

If I had a promising choice between a K pouch or a bag, I’d definitely pick the K pouch; but life was much more difficult for me before my ostomy so I still consider my life 1000 times better with my bag. 🙏 

Overall, I agree with you. If you have the choice of a k-pouch with a good prognosis, it’s likely easier to manage versus an ostomy. 

(Great topic!)

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Jayne
Aug 18, 2024 6:30 pm
Reply to Mrivera8

I'm sure you have raised pertinent points - but intubation is not for everyone ....

And also, according to my Surgeon - here in UK - these internal 'resovoirs' - including BCID which brings the 'living collar' into play - are not suitable for everyone - and for those who do have the fortune of being suitable for such  options - the solution can be for time period - perhaps after 10 or 15 years in some patients, there may be the reversal to a collecting pouch.

 

Weabow - What was your diagnosis at the time you had your ileostomy .... [around 28 years maybe] and was it the same diagnosis when you had your BCIR [around 40 years]?   ...... I may have the maths askew, just a rough calculation form your profile.

 

I ask these questions concerning any form of 'continent' solution - as I wished to achive this when I put myself up for the TIEs novel implant - BUT AS I HAVE A CHRONES DISEASE DIAGNOSIS - one would be a high risk for BCIR  ............. as explained to me in some detail - its all down to the histology and our diagnosis - Weabow is very very lucky to have been able to enjoy 30 years - so far - and wish her ALL THE BEST FOR THE FUTURE - as she says She has never had cause to regret having her BCIR - and I can fully understand this.

 

BW to ALL

 

~ ~ ~ ~ ~ waves from the UK ~ ~ ~ ~ ~

Jayne

 

 

 

Alternative 'continent' options - like TIES under development - are far from proven - and may be considered high risk - even for the more suitable patient subjects.

 

There are surgeons who do have experience of BCIR here in UK - but there probably surgeons within the States too who pereform BCIR for suitable candidates.