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Crohn's Disease Forum » Surgery » Next Stop: Ileostomy


07-13-2016, 10:27 PM   #1
DCCrohns
 
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Next Stop: Ileostomy

Hi All,

Been a while since I've been on the forum, but I am about to embark on the first of three surgeries to help address my fistulating Crohn's. After a failed advancement flap procedure to address my large (and in charge) anal fistula, I decided to move forward with a temporary Ileostomy before a second attempt at a repair (but this time with gracilis muscle).

I go in on Monday and am a mix of apprehensive and excited. Anyone out there gone this path (guessing not because I've come to understand I am a Crohn's unicorn, as many are)?

Happy to share an update on the flip side!
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~~~~~~~~~~

Diagnosed with Multiple Fistulas: 2000
Diagnosed with Crohn's: 2002
Past Meds: Pentasa, Remicade, Cimzia, Asacol, Cipro, Flagyl, Lialda, VSL#3
Current Meds: Humira (80mg weekly)
Surgeries: Gall Bladder Removal (1997); Fistulotomies & Seton Placements/Adjustments (September 2011, January 2013 & August 2013); Advancement Flap (December 2013); Temporary Loop Ileostomy (July 2016); Fistula Repair with Gracilis Muscle (September 2016); Fistula Repair (December 2016)

Last edited by DCCrohns; 07-14-2016 at 11:55 AM.
07-14-2016, 11:26 AM   #2
Trysha
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Hi DC
Wishing every success from your next surgery.
So concerned to hear of the trials you have undergone and hoping the good winds of fortune and successful surgery will soon cross your pathways of life.
Feel better soon
Hugs
Trysha
07-15-2016, 07:35 AM   #3
D Bergy
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I had a temporary ileostomy for fistulas a few years back. It went well although I never really liked having the bag much. Surgically, it went well with the install and reversal.

Hopefully, I am done with that for good.

Good luck with it all. Hope you recover nicely.

Dan
07-15-2016, 08:25 AM   #4
DCCrohns
 
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Good to hear from someone who has been through it and back, Dan. And thanks for the well wishes.

Amber
07-22-2016, 10:01 AM   #5
2thFairy
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How are you now? Surgery went well??
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Total colectomy with ileostomy featuring Sideshow Bob since January 2012

"The colon seems an unlikely candidate for dramatic effect, but now and then it serves that purpose well." The Associated Press Guide to Punctuation
07-22-2016, 10:28 AM   #6
DCCrohns
 
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Thanks for checking in!

Surgery went well on Monday, but they had to change from a laparoscopic to open procedure, unfortunately. I seem to be doing better than most and left the hospital yesterday (fourth day) and spent my first night at home last night.

Pain and mobility are the biggest issues, and I have been fortunate enough not to have nausea as I've moved from a clear liquid diet to solids.

Last night I was worried about a leak or explosion (my stoma is quite flat and we had a hard time getting a good deal when we changed my bag at the hospital). Luckily, I had no such issues but I did develop my first leak today (was told it was inevitable) and that was a big ol' mess (especially since U had just eaten and had an active stoma). I did my best to get a new bag on but don't think it's perfect (home health comes tomorrow).

So, taking it a day at a time and then will be looking to my fistula surgery in September, most likely. Happy to answer questions if it helps anyone and will keep the forum updates on any major milestones.
07-22-2016, 11:34 AM   #7
2thFairy
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Only four days in the hospital---wonderful! Sounds like you are doing fantastic. I had my first leak while still in the hospital and it was a big mess, like yours. I, also, had just eaten and it was a fountain. Four and a half years since surgery and I have only had 2 other leaks. You are off to a great start! Hooray!!
08-18-2016, 02:22 PM   #8
DCCrohns
 
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For those it might help, I'm now just over a month out from my temp ileostomy procedure and back at work.

I'm still having some skin irritation issues around the stoma due to leaks, etc. but I've been having longer runs and just had my first change with absolutely seepage evident with the bag on or off. Moving to a one-piece soft convex appliance has helped (which I add a belt to). Little victories!

I go back in four weeks for my fistula repair with the gracilis muscle...so hopefully that healing will go well without the stress of an active colon!

Food is still trial and error and some foods (like watermelon) caused things to back up, get stuck for a while and lead to blowouts/leaks. I will say I can't wait to eat a loaded salad again after the reversal!
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