Need advice on stoma relocation surgery

I need some help, guys. I have had Crohn's for eleven years, and seven years ago, I was told that if I didn't have my colon removed...I had six months left to live. Easy decision to make there. Since then, I have gotten married and adopted a wonderful daughter.

Anyway, I have had a couple of fistulas develop near my stoma, and my surgeon wants to move my stoma to the other side. It has me freaking out some and just need a few people to calm me down on this and let me know some stuff about the surgery or whatever. A doc can tell me a lot of stuff, but I prefer to hear it from those of us that live it.

Steve,
You'll get good advice from lots of folks here. Since I do not have Crohn's, I'll give you the next best thing. When considering surgery, always, always get a second opinion as a matter of policy. Any good surgeon will not take offense if you seek an outside opinion. If he or she does, pack up and run.
Prime

Thanks for the advice. I totally agree. Unfortunately, I have tried many other drugs and my GI doctor, who is the leading Crohn's doc in my part of the country, has stated that we are out of options.

Steve, I had the exact same problem - fistulas around the stoma, so I ended up having my colostomy changed to an ileostomy and moved to the other side. I recommend it. The fistulas are a nightmare to deal with, especially when you need to attach a bag.

Stuart

Steve,
I have been in this spot and you're right, it does freak you out. I had my surgery for severe anal Crohn's in 1985 at the Cleveland Clinic, the best facility in the country, and my surgeon was Victor Fazio, the best in the business. I was lucky. I was diagnosed in 1980 and only waited because my first doctor didn't believe in cutting. He said it would only lead to more surgery. Well, when I changed doctors, he said I suffered for no reason. The surgery would help, and he was right. I got my life back. But only 18 months down the road, I started having problems with fistulas around my stoma. I had trouble with my appliances, and as one would open and drain, another would appear. I was terrified of going back under the knife. I waited another 6 months. To make a long story short, I was stupid. My doctor said I was out of options and I should have the surgery. I did. They moved my stoma from my right side to my left, and I have never had another problem with fistulas again. I can't promise the same results, but it did help me. Now I have had a few more surgeries, but I have never had a problem with fistulas again. I consider myself an old timer, and most of this happened in what I call the Dark Ages. There was very little information and no support back then. I find it amazing how things have changed. Everyone has a story, and they're all different. I wish you all the best and can only tell you that it gets better. You can do this, and we're all here to help. Good luck, and if you have any questions, you can write anytime.

rpdrose

Thanks everyone. Those comments help a lot. It looks like we will put a date on the calendar tomorrow. I live in Nashville, TN and Dr. Herline at the Vanderbilt Hospital will be doing my surgery. He is going to try and do it laparoscopically but might end up making a larger cut.

What kind of recovery time did you all have? I am expecting to be in the hospital for 4 to 6 days.

My Crohn's doctor is Dr. David Schwartz...also with Vanderbilt. Super doc that actually came to my wedding.

I am also having my rectum removed as well, so if anyone has any thoughts on that...it would be appreciated. I guess my butt will be just for looks now.

Well, I can relate to that too. When I had my first surgeries, they left my rectum. Heck, they didn't even clean my bowels out. A week after surgery, I had to have an enema to clean things out! Well, I knew I would never be hooked back up again, but they told me there was no rush to have the rectum removed. This was in 1985. Well, in 2004, my last surgery, they told me it was time. I have always had tough going coming out of surgery. After 20 years, you know your body. My stomach has always been slow to "wake up". After my first 2 operations, I always had an NG tube in after I came to, but the last 2 times I didn't and it was hell. They waited almost 24 hrs. to put the tube in, and the bile that came out was amazing. When I came to in '04, I asked where the tube was. They said they didn't do that unless there was a problem. I told them if I didn't have the tube, there was going to be a big problem. I made them get the doctor, and he went over my records and said they would put the tube in. He said that he had never had someone ask for an NG tube. Well, it worked right away and it made me feel better. After 24 hours, they took it out and things were fine. It did take longer to recover having the rectum removed, but I am no longer the butt of any jokes! Had to throw that in there. Also, I told my friends and family they could no longer say "excuses are like assholes, everyone has one!" I hope this helps. It's tough and there's so much to deal with, but I have found that the nurses and aides and the doctors are some of the nicest, most caring people God put on this planet. I've dealt with this disease for what seems like forever, and every roommate I've had, I always tell them that it will get better. You may not think so right now, but it will. I'm living proof of that. Hang in there, as my wife always tells me, it beats the alternative.
rpdrose.

Hi Stoma Steve, don't worry about the removal of the rectum. I also have Crohn's and had surgery to remove my colon 6 weeks ago.

They removed my anus and rectum at the same time. To be honest, when it was first done, it was the best that the area has felt for some time (I had a fistula down there for over two years).

It got sore for a while, but a salt bath every day soon sorted that. There is only one way to go, and that is forward.