Crohn's Disease Forum » Surgery » Stoma Subforum » Missing my ostomy

10-20-2010, 08:36 PM   #1
Jer's Girl
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Join Date: Oct 2009
Location: Albuqerque, New Mexico
Missing my ostomy

I don't want to scare anyone, but ever since I had my reversal, life has been pretty hard. It has only been about three and a half weeks, but I have spent most of that time in and out of the hospital in pretty terrible pain. I just spent a week there without really getting any answers.

Turns out that my Crohn's symptoms are under control according to testing, and an MRI came up with nadda. Maybe my body is just still readjusting, but I am feeling pretty down. Except for the leaks (which i admit were horrible), having the ostomy was pretty great.

I just wanted to warn anyone that is thinking about getting a reversal that it might not be worth it in the long run. I am still trying to figure out weather or not getting the reversal was the right thing for me.

I'll keep updating as I go through this. I hope all of my Crohn's and ostomate friends are well tonight.
10-20-2010, 09:28 PM   #2
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Join Date: May 2010
Location: New South Wales, Australia
Oh no, I was hoping when I read the title and saw your name that you were answering an old thread or something! . As you probably know, I can't answer your questions so can't offer any real words of wisdom or comfort. Just know that I am thinking about you and hoping that things will settle down for you and your pre surgery expectations do come true. Sending loads of squishy hugs your way................................

Wishing and praying your next post sees you feeling better,
Mum of 2 kids with Crohn's.
10-20-2010, 09:45 PM   #3
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Join Date: Jan 2010
Location: Barrie, Ontario

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Awww Nicole...sorry to hear you're having a hard time. It's only been 3 1/2 weeks, give it some time. I'm sure your insides need some time to get back to functioning normally again. I would imagine it's a big shock to the system (much like getting the ostomy was).

Keep us posted! I hope you start feeling better soon!


Crohn's Diagnosis: May 2006
Current meds: none
Surgeries: Colostomy, December 2009

"Never trust a fart." Jack Nicholson, The Bucket List

Oscar is awesome! Loving my life with my stoma (with a hint of poo)!!

10-20-2010, 11:30 PM   #4
Jeff D.
Senior Member
Join Date: Apr 2006
Awe Nicole, we'll be praying for you. It's only been about 3.5 weeks so hopefully soon you'll feel 100% better. Take care my friend and keep us updated.
10-21-2010, 01:27 AM   #5
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Join Date: Mar 2010
So sorry you're suffering, sweetie. Hugs to you.
Dx: Moderate Crohn's in 3 locations
Doctor's orders: 200 mg Imuran
Have used: 4500 mg Pentasa, 4500 mg Salofalk, Flagyl, Cipro, 50 mg Prednisone, 9 mg Entocort.
Turned my Crohn's life around: ginger for nausea.
Claim to fame: "loopy and floppy" colon
10-21-2010, 07:47 AM   #6
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Join Date: Mar 2010
Location: New Jersey
I hope this will pass and you'll be doing better soon. Try to stay positive and I'm sending good wishes your way!!
Crohns since 1989
3 Surgeries - Hemicolectomy '08, Sm Bowel Resection '09, Proctocolectomy '10. Lets hope I'm done now!
On Protonix and Humira.
10-21-2010, 08:32 AM   #7
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Location: St Helens, Merseyside, United Kingdom

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Yes Nicole
give it some time, 3 weeks isn't long
sending big hugs your way hun, hang on in there, you're doing great!


Dx Crohn's in TI 2005 symptoms for 15 years prior

BEEN ON -Azathioprine, 6MP, Prednisolone, Pentasa, Budesonide, Metronidazole, Humira, Methotrexate,

NOW ON -Amitriptyline 25mg
21/02/14 Right hemicolectomy surgery!/profile.p...4208290&ref=ts

No-one should make you feel inferior without your consent!

10-21-2010, 09:53 AM   #8
Jer's Girl
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Location: Albuqerque, New Mexico
Thanks so much for your kind words guys. You are right that I need to give it more time. I just have to remember that there was a painful adjustment period after the Ostomy surgery too, and I got through that. It's just hard to look back and remember how great things were with the Ostomy and not wonder if I made the right choice.

I beat myself up for not getting better faster last time too and i promised myself that i wasn't going to be so hard on myself this time. I just hate not being able to have more control over my body- a feeling that all Crohnies know all too well. I need to just give myself a break I guess.

Your responses mean the world to me right now. Thanks for your endless support.
10-21-2010, 11:00 PM   #9
Senior Member
Join Date: Jan 2010
Hey Nicole!!! I cant believe I missed this post... Give it some time - It takes the body a while to adjust. Please dont get discouraged. It took you some time to get used to the stoma so things will improve
Big <<<<<<<<<<<<<<<hug>>>>>>>>>>
-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!
10-25-2010, 12:50 PM   #10
Join Date: Aug 2009
Keep your chin up and always remember to take life one step at a time!
I hope you feel better soon! Stay positive!
NEVER give up hope!!
10-25-2010, 02:32 PM   #11
Jer's Girl
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Location: Albuqerque, New Mexico
Thanks guys. I'm working on keeping my spirits up.
10-25-2010, 03:02 PM   #12
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Join Date: Feb 2010
Location: Pottstown, Pennsylvania
Hang in there! Thinking of you and hoping things start to turn around.

- Amy

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