Did you ask the surgeon why a k-pouch wouldn't be an option?

Sue

No, I just accepted their reply. Rookie move on my part. It's not like this is my first rodeo. They will probably be in soon so I'll ask then.

If the k-pouch was a possibility they would still remove the j-pouch and rectal area? She will continue to get fistulas and infections if they don't. Or am I missing something?

Yes, they would remove the jpouch and the cuff for a k-pouch.

Sue

The BCIR is performed by Dr. Donald Schiller in Los Angeles and Dr. Ernest Rhenke in Florida. Dr. Rhenke did the BCIR procedure for me almost 5 months ago and I am very pleased with the results. I might note that your daughter could have an end ileo now and later have it converted to a K pouch or BCIR at a later time. Hope all works out well for you.

Bill

I would suspect that they are saying the k-pouch is not an option because they do not do them at that facility or that group of surgeons. There are very few surgeons who do continent ileostomy surgery.

The other possibility is that if there is a presumption of a Crohn's diagnosis, then any reservoir is contraindicated because of the high failure rate (around 50% in most studies).

It is possible that she already had too much small bowel removed or anatomically there is something up, but usually they make that determination when they are attempting the procedure.

Jan

Just a little add on here...if you can get a consult with a k pouch surgeon, and since you say that the pouch is fine but the cuff is the problem, they may be able to save your daughter's j pouch and turn it into a k pouch...they do that by unhooking it from the rectum, closing out the bottom (Barbie butt), flipping it over and creating a stoma/continent valve that is attached to the other end of the pouch and then reconnecting it...it is an easier (!?) surgery than having to create a full blown k pouch + valve because they don't need to chop off any more small bowel other than the 30cms for the valve.
I would strongly suggest that you try for that consult first before making plans for the j pouch removal.
Sharon

Good point Sharon! If the issue is "we don't do that here," it makes sense to consult with a surgeon who does do the surgery before scrapping a perfectly good pouch. It would be nice to avoid an extra surgery too, if possible. Being in California is a plus, since at least there are continent ostomy surgeons here. But, she still may need to travel a bit, since Chico is in the northern part of the state.

But, I do see that Crohn's is the diagnosis, according to the profile, and with associated arthritis. So, that probably makes her a poor candidate. Still, worth a second opinion.

Jan

I'm sorry your daughter is facing this...I always feel badly for the young people who deal with this...

I was 30 when I opted for an end ileo and pouch removal due to chronic pouchitis. It was the best decision of my life. I have since had two beautiful children and I live a wonderfully full, active, normal life. Sometimes too boringly ordinary, but I love that!

I considered BCIR and K-pouches and decided they were not right for me for several reasons. One, no one in my local area did them at that time and I didn't want to travel if I had problems. I was sick of being sick, and wanted the most predictable option, which was the ileo.

I also love to travel and wanted what would be easiest to explain if I were in a country where English wasn't prevalent. I figured an ostomy would be more widely known than the other options.

Finally, since you can still get pouchitis with BCIR or K-pouch, I didn't see any reason why my body would react differently. The last thing I wanted was to have another surgery and still end up with pouchitis.

Your daughter may have different priorities, and that's fine. What matters most is that she explore all her options and think seriously about short and LONG term outcomes. What does she want her quality of life to be?

If she ends up with a perm ileo, please let her know I'm here to talk if she needs to...I understand how hard this can be, but I'm proof that it can not only be a good choice, but a great one...

Yes Jan, she has Crohn's. Her surgeon said she would have similar problems with the K-pouch. They have her surgery scheduled for tomorrow morning at 6 am. I can't remember if I mentioned we are at Stanford.

If I did wait for that second opinion, she could get staph again. Each time it gets a little worse. This time not only was it near her fistulas (she had setons placed in June) but it had traveled down and was all over both legs. I don't think time is on her side. I guess if the k-pouch is still an option after this surgery we can consider it later. I am so torn!

Oh gosh, I'm sorry to hear this. It sounds like surgery now is the best move. She has been through so much and ditching the pouch will, knock wood, be the first step to better health, as it was for JillM.

I see she had her surgery with two steps so I will just say that if she has never had an end ileo (I'm guessing the original as well as the temporary diversion were loops?), it is NIGHT AND DAY between the end and the loop. I loved my end ileo and was very active and healthy and happy, almost kept it permanently. The loop was another story -- could not WAIT to get it reversed. So hopefully in addition to a good outcome she will be pleasantly surprised with the end ileo itself Best of luck!!

I agree with Liz - the end ileo is soooo much better than the loop. I will be thinking of your daughter in the morning. I hope this surgery brings her good health.

Kpouch/BCIR can be done on CD patients but it is case by case situation. I don't know what the surgeons look at when reviewing the patient's CD. I know a few people with the BCIR that have CD. It can always be done later, even years later, if there is enough small intestine left.

Unfortunately, when you have fistulizing Crohn's and extraintestinal manifestations, it is not a good indication for any sort of pouch.

Sounds like the choice is wise for the present. Maybe there might be future advances in this area with better medical mangement.

Jan

I hope that it all goes well for her and keep her distracted as much as possible...this is still a huge pyscological change to her anatomy and she will need all of the support she can get...let her closest friend(s) in and make sure that they are supportive and loving...and let her know that there are always options like Vanessa said...there is no reason to close the door until she has had a consult with another surgeon...but for now, she will need to heal...give her our address and have her read the posts on here, it helps tremendously.
Hugs and hopes for a good outcome
Sharon

confused, people that have Crohns and get fistulas are not good candidates for a pouch? if they go to an end ileo, why wont a fistula still be an issue? its still intestines? why would fistulas not occur with an end ileo but would with a pouch?

They say it is the reservoir that causes the issues. Perhaps it has to do with fecal stasis and bacterial overgrowth.

It is not so much the fact there are fistulas specifically in this instance, but the fact that it means that this is a more aggressive form of Crohn's, and a higher risk ratio for pouch failure. The whole focus in surgical treatment in Crohn's is preservation of small bowel, because you don't know how much future resection will be required, or how much small bowel function may be lost to active disease.

When you are already faced with one failed pouch, it would not be prudent to look at creating another one and risking more small bowel loss. They are hoping with further gene studies they will be able to identify/predict who will respond to specific medications or surgical treatments.

Currently, it is a case by case determination. This link is an article that explains Crohn's disease of the ileal pouch in depth.

http://onlinelibrary.wiley.com...ssential+maintenance

If you can't access the pdf link, here is the abstract:
http://www.ncbi.nlm.nih.gov/pubmed/18816633

Jan