surgery options

Hi all!  You know I float in and out here and that my mom and I both have CD. 

My mom has a stricture at her rectum that has created a lot of scar tissue.  This causes her to have very loose urgent stools about 20 times a day.  Sometimes she goes before she even knows she needs to go.  She is somewhat confined to the house because of this and wearing diapers.  Immodium doesn't work.  The doctors say the loose stool is her body's way of getting rid of the stooll.  Firm stool would not pass because her rectum is so small (problem # 1).  They have dialated her rectum to make it larger and this has cut down the bathroom trips to 15 a day.  Problem # 2 is a fistula between the ileum and the colon.  She has talked with the surgeon & GI. 

Here are the options they give:

1 - Do nothing becasue she is not "sick" - but live with frequent trips to the bathroom and don't really leave the house because of the bathroom trips.  Wait for the fistula to cause a problem and then fix it.

2 - Fix the fistula now with a bowel rescection.  In the future severe constipation could cause this area to rupture becasue the the rectum is so small.  This still doesn't solve the running to the bathroom problem becasue of the small rectum.

3 - Have an bowel resection with a permanent Ileostomy.

So, questions are - 

Anyone had this before and what did you do?

What's the difference in Ileostomy and a Colostomy?  (Will post on that board too.)

Is there an alternative that is not as extreme as a bag? 

For those with bags - What is life really like?  Was your bag by choice or a "have to" surgery?

Thanks!

Mandy,
I used to have Crohn's in my rectum and would have to go to the bathroom 20+ times a day. I lived like that for 7 years and tried every medicine, vitamin and natural diet available to achieve remission and avoid surgery, but nothing worked.

After having problems with a recto-vaginal fistula which caused an abscess on my right butt cheek, my GI doctor referred me to a colorectal surgeon. The abscess had to be surgically opened up and drained, and it had to be left open to heal from the inside out. Since it was so close to my rectum, and I was going to the bathroom so often, I was at a high risk of getting an infection in the open wound. The surgeon recommended a temporary ileostomy to bypass the rectum. Since I knew it was reversible, I agreed to it, but had every intention of having it reversed.

Much to my surprise, having an ileostomy was a wonderful break from having to go to the bathroom every hour. I could go grocery or clothes shopping without having to visit the restroom several times. And the best part of all was that I could finally sleep through the night without waking up several times to go. The bag was so flat that nobody could tell that I had it, and it didn't bother me either.

The difference between a colostomy and an ileostomy is this: a colostomy is where they loop your large intestine through your tummy, and it is on the left side of your belly button. An ileostomy is where they loop your small intestine through your tummy, and it is on the right side of your belly button.

Well, after an 8 month trial with an ileostomy, I started bleeding from the rectum, even though I wasn't using it. My GI did a colonoscopy and said that my rectum and colon were terribly diseased. That's when I called my surgeon and told her I was ready to have the surgery to remove my colon and rectum, which is called a proctocolectomy. They kept the ileostomy in place and removed everything that was diseased.

That was two years ago, and I have never regretted that decision for one second. With all of the problems that your mom is having with her rectum, a temporary ileostomy would give her a break from all of the bathroom trips and accidents. Because, let's face it, it's exhausting and does not make for a good quality of life. If you have any questions, please feel free to e-mail me directly or post them here. The Ostomy forum on here has a lot of good information, too.

Praying for you and your mom,
Cecilia