Hi,
I had obstruction-like symptoms last fall and after a CT and 2 pouch scopes they finally found 6 stones in my pouch. Dr Shen my GI (@Cleveland Clinic) was unable to remove them during the endoscopy. He told me I was his 9th case of pouch stones though 5 of them were actually in j-pouches and most had to be removed surgically.
He actually referred me to a surgical-urologist who specialized in stones (gallblader, bladder and kidney) and he agreed to try their equipment and methods on me. Went in through my stoma and used a pneumatic type device to break up any stones that were too big to come out on their own.
It was done in the OR under a general and I did spend one night in the hospital for observation, but all has been well since then.

I did wait 2 months between discovery of the stones and having them out since i was in school, but I was pretty much on a liquid and GI soft diet to prevent any obstruction because the way my pouch is built the stones ended up collecting around the entry of the small intestine to the pouch.
Dr Shen said he's not sure why they form or what causes them and said there was no evidence to suggest that I need to make any long term dietary alterations however, since its so rare I doubt any studies have been done.
so maybe if you can find a urological stone specialist he might be able to fish them out for you!
Here is a link to my blog and I had uploaded 2 pics one from the scope and the other the stones are out and on a tissue - if its of any interest.
http://carpekat.blogspot.com/2011_12_01_archive.html

good luck!
--
katie

I would think they are gallstones. They were probably small enough to pass through the gallbladder and into the GI tract. I had a funny looking little stone in my output once but it was small enough to go through my catheter. Read up on gallstones and see if you have any of the symptoms of passing one.

When I had my recent work done they found three stones. Ithink they only planned on removing them if I needed full blown abdominal surgery which Idid not and they are still in there. They do not seem to bother me.

Thank You for all your very valuable information regarding my stones. At least I am not the only one in this world having them.
I e-mailed my GI doc your info, maybe he will learn something because there are still two stones left to fish but I feel better with 3 stones gone.
Thank you all, I have learned so much from this site even after living for 32 years with the K-pouch.

I also had stones.Good size ones.I believe they were the result of meds taken over a period of time for osteoporosis.
After seeing a colorectal surgeon who is knowledgeable of Kpouches, he consulted with a staff urologist. Together, they planned that using a technique called lithrotripsy, which breaks the stones into pieces for removal through the stoma was the best option.
It was under general anesthesia and one night in hospital.

Thank you so much for the information, especially regarding
breaking up the stones. My GI doc did not know how to break up the stones safely. He took out 3 stones, good size, without any
sedation but in the end it was painful. It was my choice not to have sedation. Two more stones to go but my doc is waiting for me to complain or if it helped that 3 stones are out. I still get pain and don't really know, if the stones are the cause. I have also taken Cipro, just in case.

I guess i am another member of the "stones" club. Just left cleveland clinic seeing dr. Shen. 10 yrs with bcir and the last 2 years with pain and frequent empyting ( to relieve pain).been on all the antibiotics, gluten free, and sugar free diets too. At cleveland clinic, I had a reverse cat scan, and pouchoscohpy in surgeon's office while there. Both dr's thought i had strictures, and dr. Shen scheduled me for a dilation ( under sedation)! The stone is about 2 inches, so he couldn't get it out! Dr. Shen has only seen 10 cases of this.( it was above the pouch) now i will go back and see a urologist who will use a machine (forgot name) to break it up. Not sure who or how they will get smaller pieces out.
This has been a 2 yr journey, and now I will only go to CC-- dr. Shen is absolutely fabulous!

2inches?! That is huge!
I like Jasmine's reply...could they be galstones that traveled down the common bile duct into the digestive tract and then migrated into the pouch? Or are they calcified meds that have been hanging around in there for way too long and developed a skin?
Did anyone bother to send them to pathology to find out what they wre made out of?
Really curious
Sharon
ps. I posted in the general section that I am having pain in the closed anal region like I still have a sick rectum in there...anyone still get pain and pressure?

I have severe pain and a lot of pressure in my ex-rectum. Shen tried to kill the nerves down there but I it did not work. I am going back to Cleveland Clinic to See J. Cheng, he is I think the top 6 in the world for Pain Management. Shen put it in my records to have nerves blocked by him since Shen only does skin basically.

but I agree Bo Shen is the best. I transferred my care to CC. Just so much easier to go to one spot for it all and get people who actually listen and do work.

Marz,
Dr Shen sent me to Dr Monga (urologist) to blast my stones apart, I'm guessing that is who he is sending you to as well. Dr Monga is awesome and very kind. You'll be in great hands.

--
Katie

Yes, kaydbird, that is who I will see. Waiting for Dr. Shen to schedule him after I have another pouch xray (the day before)!
I wonder if I will have to spend the night in the hospital.
Sharon, I will definitely have the stones analyzed and I will post the results. It may be 3 weeks before I can get in.
I am starting to get paranoid about taking the PB 8 capsules. I took them for 8 years, now I think I may open the capsules until I find out about the stones.
Dr. Shen said the outside of the "stone" was calcified and the inside was soft, which is why it didn't show up on the CAT scan.
I really think the Doctors were surprised at the outcome, since it certainly looked like strictures on the CAT scan.

Amazing!
I am still shocked at all the things that can happen to a k pouch (or J?)...I remember thinking that once I got my pouch that my life would finally 'start' and that would be it...now I realise that it is just one long journey down the road that most others never take.
Sharon

The saga with my stones is still going on after three had been removed through stoma by GI doctor. At the next attempt he could not get the other two. Never got a real answer what the stones were made of but he said something like calcification. I think Vitamins have something to do with that. I now take only capsules. He referred me to Health and Nutrition Person, which I have not gone to because I am in Puerto Vallarta, Mex. and without pain at the time. My GI doctor also referred me to a General Surgeon that does Gallstones etc. but I don't think he has any knowledge of a Kock Pouch. Still like the option to reduce the stones in size and take them out through stoma. Don't really want them to cut into my pouch. Might have to push for a doctor that is not in my insurance plan but has the knowledge about K-Pouches. They don't volunteer to do that.
Thank you for all the good information. I have lived for 32 years with my K-Pouch and did not have many problems and didn't even know anyone who had one. Thanks to Janice, I know that I am not alone. We both had the good fortune to have Dr. Gerber.