Crohn's Disease Forum » Parents of Kids with IBD » Question on temp ileostomy reversal


01-23-2013, 04:32 PM   #1
mugsymagoos
 
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Question on temp ileostomy reversal

Hello!

My daughter has a temporary ileostomy due to her colon being perforated during a colonoscopy. She has had the temp ileostomy since June, and will have it reversed sometime this year. Does anyone here have experience on the recovery time, and what to expect after the reversal??

Thanks for any information you can give me!
01-23-2013, 05:09 PM   #2
Devynnsmom
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I have no experience, or advice. But I wanted to welcome you to the forum. I know someone will be along soon who can help answer your questions. You will find lots of support, and information here. Good luck, I hope she can have the reversal soon. (((((hugs))))))
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Devynn (12 years old) was *unoficially* diagnosed with Crohn's disease in Dec 2009.
That diagnosis was changed to Ulcerative Colitis in Mar 2012.
Pentasa ASA Dec 2009-Mar 2012 (dosage tweaked a couple of times)
Mezavant Mar 2012- Nov 2012
Sulfasalazine-Nov 2012
01-23-2013, 05:20 PM   #3
David_Ward
 
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Hi I also have an ileostomy which was done back in 2011. They took out the entire colon but left the rectum in case of a reverse as well. Usually it would take a min of 6 wks to heal and can go up to 8 wks just because you have to learn how to "use" the toilet again. I don't mean to scare you or anything but I have heard that reversing an ileostomy can cause complications in certain circumstances but I would def talk to the doctor to see if it will be ok, which I'm sure it will be. But I wish you and your daughter the best of luck! God bless and never give up
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David Ward
Diagnosed with crohns at age 6 now 24.
Had ileostomy 2011
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01-23-2013, 05:46 PM   #4
mugsymagoos
 
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David,

She has her colon and everything else intact. They just did the temp ileostomy to let her colon rest and heal, and also because it was perforated during the colonoscopy. I have not heard of the healing time being that long for this procedure. Also, it was done laproscopically.
01-25-2013, 07:21 AM   #5
DustyKat
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Hey mugsymagoos,

Both of my children have had resections but no stoma. I will tag Crohn's Mom into this as her daughter had a reversal done.

Also pop into the surgery forum here and the stoma forum here. There are loads of fab people that hang out there that written of their experiences.

Dusty. xxx
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01-25-2013, 10:10 PM   #6
Crohn's Mom
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My daughter has a temporary ileostomy due to her colon being perforated during a colonoscopy. She has had the temp ileostomy since June, and will have it reversed sometime this year. Does anyone here have experience on the recovery time, and what to expect after the reversal??
Hi Mugsy

I took a look at your other posts cause I wanted to know how old your daughter was before I put my lil ole opinion in here
I see she's 17 and is (or was?) being treated at the Mayo clinic in Jacksonville, by the same dr. as my daughter, Dr. Cangemi?
I'm curious if you are still going there ? and who is your surgeon?
Small world for sure !

Anyhow, my daughter as Dustykat said also had a temporary ileostomy and then her reversal just over a year ago.
The surgery was relatively straightforward and much easier on her than the resection that led to the ileostomy in the first place.
She had the surgery on December 13th and returned to Tampa for college the second week of January. It may have been a bit sooner than the doctors, or doctor mom, would have recommended, however she did just fine.

I'm going to copy a few of my excerpts from when I posted after Gab's reversal surgery for you to read ( I don't want to try and go off memory lol)
I hope it gives you a little info, and relief of worry
Please let us know how her surgery goes !

Day 1:
Gab had a pretty good day considering. She is in pain of course, it's to be expected. However, it's nothing compared to the pain she had post surgery in March. I am pleased with that.
Also, she didn't wake up with any extra tubes this time! No catheter, No JP drains, and especially NO OZZIE ! she's already been up and to the restroom to pee a few times ! Also, We can already here grumbling sounds in her bowels! All good stuff

I had a talk with her the other day and was trying to explain to her that she will most likely experience some phantom Ozzie moments since he was around for nine months, and was definitely a part of her every experience. Well, I have lost count at how many times she has told me that she keeps thinking he's still there and reaches down to "quiet" him and realizes it's gone. that and she keeps asking why they are taking so long to take her back and do the surgery and how she just knew it wasn't going to happen Poor girl, I can't wait till her pain meds are lowered and she can remember that she's had the surgery and it IS REAL AND GONE
Day 3:
She's doing great for the most part. Little spikes of a fever here and there, pain is up and down, and the biggest problem until today was her heart rate. The nurse came in the night before last and woke her because her heart rate was 139 while sleeping. They called up an emergency EKG because she seemed to be a bit short of breath and was complaining of chest pain; they also quickly drew some bloods. Everything was "normal", Thank God!, but it took a day and a half for it to lower to normal ranges. It was definitely scary for a bit, especially for Gab as this sent her into major anxiety and panic attack. Which in turn didn't help in trying to lower the heart rate.
But, all seems well with that now !

Her bowels are making all the noises they are supposed to, but no movement just yet. Its causing her some discomfort, but I expect this is normal while it's moving through for the first time.
We're hoping it happens today so we can possible go home tomorrow !

Oh ya, and she went off the of pca pain pump yesterday already, and is now just taking percocet every 4 hours as needed, with Torradol in between for any breakthrough pain if needed
I think I need to read some other resection threads on here so I can have a realistic idea of how this waking up of the bowels really works... And not just the dear surgeons day to day well maybe's lol. He came in today and backed her off of the clear liquids only and told her she's only allowed to sip a little now. Her belly is hard and distended. I'm not worried per say... Just uneducated in this particular department at the moment not for
Long tho! Lol
Day 4:
The train left the station ! (she pooped!)

Day 5:
Gab gets to try soft foods today and.... If they settle ok with her ... We're going home !!!
So just a little bit of what it was like for her and I at the hospital for you.
Hope it helps !
After we got home everything was great !
Best of luck !
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Mom to Gab (20)
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and Austin (18)
DX: Crohn's 7/2013
01-26-2013, 03:12 PM   #7
mugsymagoos
 
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Thank you so much!! Yes, my daughter sees Dr. Cangemi also. She was actually there yesterday for a scope. She has been on Cimzia and 6MP. He still saw inflammation in the colon but said because of the temp ileostomy it could be diversion colitis. He is having her add these enemas that have 5-aminosalicylic acids that will help with the inflammation I guess. He also saw a stricture which he said MIGHT be due to where her colon was perforated back in June (which is why she got the temp ileostomy on the first place!) He wants to see her back in 8 weeks for another scope to see if the enemas work, and then we will go from there. Not the news we wanted as we thought everything would look good and we could schedule the reversal! Dr. Cangemi is always so hopeful however, and yes, we will be using Dr. Landmann also as the surgeon when they decide (hopefully) when she can have the reversal surgery. She graduates high school in June, and we are planning for college! Scary!! I know you are going through this with your daughter too! I am hoping for better news in 8 weeks, but in the meantime, she feels fine, has gained weight etc....

Thank you for responding!! I am glad I know someone else with a college aged daughter going through the same thing and also that sees Dr. Cangemi at the Mayo Clinic!! Oh, where in Tampa is your daughter going to College???
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