New to the group

Hi Rob! Sorry you are having so much difficulty with your J-pouch. About 17 years after my J-pouch surgery I started having an increase in the number of bowel movements as well as nausea and cramping. I always had diarrhea after my surgery but medication, Lomotil, had kept it to 6-8 times a day. 

It took making a trip to the Mayo Clinic to get a diagnosis of Crohns. I started on Remicade to reduce the inflammation. I was referred to a motility specialist to address the diarrhea problem. He put me on liquid morphine sulfate or tincture of opium. I had resisted attempts to have this prescribed for me because it just sounded scary. I had been on Tylenol 3 for the codine; not for pain but for how it slowed down my gut. Anyway the morphine sulfate works great! The dosage had to be adjusted a few times as too much just causes things to stop. I take .5 ml twice a day and supplement with lomotil as needed.

Good Luck!

Hi Rob,

Welcome to the club and so sorry that you have to be a part of it!

I can't weigh in on the frequency problem but I may be able to assist with the kidney stones.

My 1st attack was in my late 20's...blinding pain, thought that my pouch was the cause of the pain and that sent me into a worse panic...the ER doc took one look at me and diagnosed the stones immediately...Then he asked me a very strange question....where do you live? He listed 2 out of 20 Paris neighbourhoods and I  confirmed that I lived in the 15th...but didn't understand why he had asked? Apparently, our water system was extremely high in lyme deposits...we had hard water. 

Once we got the pain and the passing of the stone squared away he instructed me to start drinking filtered water (never mineral water! funny enough, it is a contributor to stones) which removes most of the culprits. At worst, spring water is fine.

Whenever I am away or too lazy to pick up a new filter, I feel the effects within 3-4 weeks...I drink about 3 quarts of fluids/day between water, coffee & tea so it is a lot for my kidneys to handle. I also avoid soft drinks mostly, dilute my juices and use a lot of lemon in my water.

I have only had 2 or 3 other minor incidents since then.

It is a simple trick but it works.

Sharon

Thanks for the input.  I have an appt to see a Colo/ Rectal surgeon to discuss possible dilation procedure of the pouch.  We will see what he has to say.

Be Well!