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Crohn's Disease Forum » Surgery » Stoma Subforum » Ostomy Reversal - Anyone with experience?

09-03-2010, 01:10 AM   #1
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Location: Parksville, British Columbia
Ostomy Reversal - Anyone with experience?


I'm new to the forum and looking for some advice.

I got diagnosed with Crohns in 1998, got a bowel resection and "temporary" colostomy in 2000, and had another surgery or two before a total colectomy, an ileostomy and a rectal stump sometime before 2002. I was doing so-so with the Crohns until I started Remicade in 2005. Since then the Crohns has gotten much better.

Everything had been going along quite well until about May this year when I started getting bowel obstruction-like symptoms. Instead of the norm where I would get the symptoms for a day or two, they stuck around for weeks, at which point I started eating less. I started feeling somewhat better, but also started losing weight.

After a meeting with my specialist and a CT scan, it looks as though I have a parastomal hernia, with an extra loop of my intestine coming through my abdominal wall. My specialist strongly suggested surgery was necessary to repair the hernia.

At my first meeting with the surgeon, I was presented with a question I had never expected : he asked me if I wanted to be "reconnected" or if I'd prefer to have my rectum removed at the same time he fixed the hernia. (It sounded to me as though there is an increased risk of developing cancer in the rectal stump if it's unused, so it would be best to get rid of it if I didn't have any plans to use it.)

My initial reaction was that I should stay with the tried and true, as my ostomy had changed my quality of life dramatically when I first got it in 2000. My memory of the time immediately prior to the ostomy is that of a life where my every thought included a calculation of the time and distance to the closest bathroom.

After some time to think, a flexible sigmoidoscopy, and biopsies that show a relatively healthy rectal stump, I'm currently planning on getting "hooked back up."

And that brings me to my actual question : does anyone have any experience / advice in this area? Specifically, I'm worried that after my surgery (3 weeks away) I'll once again be tied to the bathroom. I don't have any large intestine, and I haven't used any rectal-related muscles for 10 years now. Maybe they've forgotten how things work?

I currently visit the facilities 5 to 7 times in a 24 hour period, but mostly on my terms as I don't have "the urge" to go. While not always convenient, my ostomy hasn't really been a big burden, and most of my thoughts of it are good as it drastically improved the way I lived life. However, I can't help but think wistfully of being reconnected again.

Any advice appreciated!
09-03-2010, 04:54 AM   #2
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Join Date: May 2010
Location: New South Wales, Australia
Hi Owen and

Good to see you here. Would you like to post in the Your Story forum? That way you can be properly welcomed and more people may see your question. Also if you haven't already found it there is a stoma subforum that you may like to post your question in as well..........................

This is a great place for support and info. Welcome aboard!

Take care,
Mum of 2 kids with Crohn's.
09-03-2010, 05:07 AM   #3
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Welcome Owen!! I agree with Dusty. You should post in Your Story to be seen by the most members. Any advice I could give would be purely based on others experiences on this forum but most seem to be relieved by their ostomies as you were!! You have a lot to consider. Best of luck to you!!!
Mark, father of EJ

EJ dx w/ Crohn's 12/09
PSC 3/10

No more 6mp
Currently in the Humira Club
09-03-2010, 11:30 AM   #4
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Join Date: Sep 2010
Location: Parksville, British Columbia
Thanks for the advice!

I've also posted this in the "Your Story" forum.

Should I be deleting this thread?
09-03-2010, 11:41 AM   #5
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Join Date: Oct 2009
No,please do not delete this thread, it is a good discussion. What the others mean are in past journey we would like to know how you got diagnosed, you can do that on a separate thread. This posts stands out and others will see it. We just want to know more about you!
09-03-2010, 01:17 PM   #6
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CDDad's Avatar
Join Date: Mar 2010
Location: New Jersey
You have a very difficult choice, but it looks like you made your decision. I have a permanent ileostomy and did not have to make that decison as my rectum was part of the problem. I'm kind of glad that decison was made for me.

Here's my 2 cents: If you're a young guy (20's) and still have dating, etc in your life, I might make the same decision to reconnect. But, maybe if you're married and a bit older, I might go with the ileo and not risk future Crohn's complications in the Jpouch (or whatever they plan do do for you). Then your quality of life would go way down.
Crohns since 1989
3 Surgeries - Hemicolectomy '08, Sm Bowel Resection '09, Proctocolectomy '10. Lets hope I'm done now!
On Protonix and Humira.
09-03-2010, 01:44 PM   #7
Jer's Girl
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Location: Albuqerque, New Mexico
I am considering getting a reversal in the near future too. I am very conflicted. Even though I havenít had my stoma as long as you have, I have had a really great experience so far. Still, when my surgeon gives me the go ahead, I think I am going to get hooked back up. Although I do have some concerns about getting things reversed, my feeling is that I can always go back to the stoma in the future. Once I get my guts removed, I can never go back. So, I say try life without the bag for a while and if it doesnít work out then at least you know that there is relief in the form of another ostomy. That is what I am telling myself any way.
It is a really difficult decision. My surgery really changed my whole life for the better. I can only hope that things wont go back to being the way they were before the ostomy once I get it reversed.
Good luck and keep us all in the loop. I really hope things go well for you. 
09-06-2010, 12:25 AM   #8
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Join Date: Sep 2010
Location: Parksville, British Columbia
I'm married with kids, so the ostomy doesn't really play into the dating scene or otherwise.

The surgery I'm having this time isn't as a direct result of active Crohns, so I can't help but wonder how long I could gone without if the hernia didn't develop. If I get reconnected, I can only imagine my chances of developing another hernia would be greatly reduced. Of course, the Crohns could always come back enough that I could be faced with surgery because of that, but I'm hoping the Remicade will keep that at bay for a long, long time.

I feel like I'll probably regret passing this opportunity up if I didn't take it. I also feel like if things don't work out then I can always revert back to an ostomy. If that were to happen, I think that would be the time to "call it quits" and get rid of the rest of my currently unused plumbing.

And while I have more or less made my mind up, I certainly could be swayed with enough evidence that I'm clearly making the wrong choice. Although with what I've experienced up until now with Crohns, there never seems to be anything totally clear with predicting how the future is going to go...
09-07-2010, 12:48 PM   #9
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Location: New Jersey
Sounds like good logic to me. I wish you the best luck! Let us know how it goes.
09-07-2010, 01:14 PM   #10
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Join Date: Jan 2010
@Owen - If you believe the numbers, statistically speaking, you can find tons of information that will show that Crohnís has a better than 45% chance of developing pouchitis and j pouch failure. My GI doc is considered as one of the most knowledgeable in the industry, confirmed this figure, as well as two other world-class GIís.
I understand your predicament and hope and wish you the best of luck with your decision.
-Best wishes - Dan

1. Diagnosed with Crohn's UC 1995
2. Flagyl/Cipro Imuran in 80%remission 1997 2005
3. Used 5mp, asacol, 6mp, remicade, imuran, Cimzia, entocourt, Flagyl/Cipro and enemas/suppositories until 2010 with periodic relief.
4. July 9th 2010 total ProctoCollectomy surgery! Free at Last!

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