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Hello all!

I was writing today to see what your guys thoughts are about going from a j-pouch to a permanant ileostomy? I have had my j-pouch for almost 5 years now and I have been dealing with 8-10 bowl movements a day (sometimes more) and chronic pouchitis. I've tried antibiotics, and while they work for some time, I really don't want to be on antibiotics my entire life. I'm all about natural treatment and have looked up diet and any supplements I could take to help, but it seems like I haven't found the right combination for me. Anyhow, I've thought about going back to a bag since I did really well with it (like eating what I wanted, working out, swimming, etc.) What are your guys thoughts? Thanks!

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If antibiotics give you good results without side effects then (for me) that’s far preferable to the risks and misery of a major surgery. The word “natural” can lead you astray: there’s nothing natural about surgery or ostomies. I don’t know if you can make peace with pouchitis treatment, but that’s pretty much the challenge.

The notion that you can avoid all medications forever is a fantasy. Some people are lucky enough to not need meds as they age, but for most of us the wisest course is to deal with problems, including chronic ones, as they arise.

I’m sorry your pouch isn’t working as you hoped it would - mine also needs antibiotics to work well. When I give it the care it needs, though, it works very, very well.

I was also considering having my pouch removed and going with an ostomy. After reading posts on this forum and seeing the treatments others are using, my pouch is doing much better. I now take one Ciprofloxacin antibiotic daily, as well as VSL#3 probiotics. The reversal surgery is a big surgery, a surgeon told me. As bad or worse than the pouch creation. I'd advise making that my utmost last resort. 

I am sorry that you are experiencing problems with your J pouch that would lead you to consider an ileostomy.  Hopefully, you will find something that produces good results and avoids the need for additional surgery.  If that does not happen, there are two procedures that do not require having an external bag.  These are the K pouch and the BCIR.

I had a J pouch for 30 years and was able to deal with the high frequency and leakage in an acceptable manner.  Medical complications made it necessary for my pouch to be removed, and I strongly did not want an ileostomy.  Fortunately, I had knowledge of my options and chose to get a BCIR.  Removal of the J pouch and creation of the BCIR were done in one surgical procedure and I have had very good results.  Without the bag and other issues that ileostomies present, I am able to enjoy life and rarely think about my procedure. The pouch is emptied several times a day with a small plastic catheter that can be carried in your pocket or purse when you are away from home.  I never have to be concerned with the location of the nearest bathroom.  I am able to eat almost anything I want, participate in any sporting activity I want, experience no embarrassing leakage and experience intimacy.  My total supply costs (catheters, absorbent pads and lube) are under $200 per year. I am hoping that you can find a solution that will avoid additional surgery.  Best of luck!

Bill

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.

I would like to add information about the K pouch and BCIR stomas.  They are identical for both procedures and are located 2-3 inches lower than a conventional ileostomy stoma.  Unlike a stoma that must protrude into a bag to work effectively, the K pouch/BCIR stoma is flush with the skin and slightly larger than the ¼ inch (30fr) diameter catheter used to empty the pouch.  This stoma is typically covered with an absorbent dressing or cover, and since there is no external bag that expands when filled with stool or gas, nothing shows when wearing the tightest of clothing. Since all of the internal pouch’s contents empty through the catheter, there is no skin irritation surrounding the stoma.  People with these procedures can feel comfortable using the general (not handicapped) locker room at the Y or having sex. Using the catheter to empty the pouch is easy to do, painless, and easily done under the most challenging circumstances, including public restrooms, airplane lavatories, porta potties, or in the woods when hiking or camping.

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