I had my j-pouch for 5 years before I was first diverted to a permanent ileostomy. 6 months later had it's removal which included the removal of everything else south of it and received my barbie butt. The thought behind the initial diversion was that maybe my j-pouch would get better once there was no waste flowing through it. Wrong as I continued to struggle with it. When it was then removed the pathology report showed it still had pouchitis and cuffitis. I had a horrible time with my temp ileo and the permanent one is much better.
Before that I was on canassa suppositories for around 4 years, which I used every night, and antibiotics off and on for 3 years before a year of alternating 2 antibiotics. My Mayo Clinic GI told me that he had never seen where being on antibiotics for j-pouch problems made it problematic for people who later needed antibiotics for other health problems. I was afraid that by being on them full time I was going to have other problems later in my life.
Besides pouchitis and cuffitis I had a narrowed anal canal and chronic structures in several locations including one caused by the cuffitis. I needed to give myself enemas in order to empty my j-pouch.
My diversion and removal surgeries were at the Mayo Clinic. The diversion surgery was performed laparoscopicly and the removal surgery had to be performed open. My surgeon said that surgery had to be open and that it was more involved than my colonectomy j-pouch creation surgery. That said I found the removal surgery was much easier to recover from.
Once this surgery is done there is no going back. You will be faced with a lifelong ileostomy. You mentioned 8-10 bowel movements a day. You might be emptying your ostomy bag just as many times. It is easier to empty the bag than deal with the pain and mess involved with a badly behaving j-pouch.
You can eat most anything you want but quickly learn that your food choices dictate the consistency and transit time of your waste. For example I have to plan eating away from home to allow for the emptying of my bag. My ileo is most active before and during the evening meal time of day. I also battle dehydration. My primary care doctor ordered many IV administered bags of fluid for during the first months after my diversion surgery. I went to the ER once thinking I was having a heart attack. I was dehydrated. I've learned to manage this and do need to use electrolyte additives most days. This is also a function of diet, Imodium and metamucil. An ileo has to be emptied more often than a colostomy as more fluids are in the waste.
I have become good at emptying in public restrooms but usually feel rushed. I carry a cosmetic bag filled with a change of appliance should it break or leak, clean underwear, small bottle of "one drop" and a little bottle of water to assist in cleaning out the tail of the bag. I also have a ziploc bag and individual wipes should I ever get stuck somewhere with out a sink. I have never needed to change my appliance/bag like this but you never know what will happen.
There is also the wardrobe factor. I am self-conscious of it and wear looser fitting clothing. In fact I wear ostomy underwear that allows for there to be fabric in-between my body and the bag plus between the bag and clothing. It's a built in bag holder There are also various covers that fit over the bag that are available on etsy and similar places. I also have swim suit bottoms with a bag holder/internal shelf. There is no problem swimming or showering with an appliance on.
There were problems finding the best appliance to use. I tried samples of every manufacturer and type of appliance I could obtain. When something new comes on the market I get a sample of it. The various manufacturers keep us informed about their products. I also need to use various rings in-between the appliance and my skin. There are also various wipes used to care for the skin. My insurance covers everything needed. You might want to find out about your insurance as the maintenance of an ileostomy isn't cheap.
All of this said I am glad I had my j-pouch removed as I feel much better. I wish I'd had it removed 18 months before I was diverted. If I'd had a crystal ball I would have skipped the j-pouch part of my journey. Most people have success with their j-pouches. I was unlucky for having UC and a failed j-pouch.
The BCIR or K-pouch didn't look attractive to me. One reason is it requires a little stoma that you need in order to empty it.
If you want to read more there are some good discussions in the Ostomy forum here. If you have any questions please ask or PM me.
