Share Facebook
Crohn's Disease Forum » Surgery » Stoma Subforum » 3 months after total proctocolectomy


01-22-2013, 10:09 AM   #1
JennaRae
Forum Monitor
 
JennaRae's Avatar
 
Join Date: May 2012
Location: Keller, Texas
3 months after total proctocolectomy

So it's been 3 months since I got Agnes, my perm ileostomy and had my rear sewn up. For the longest time I thought I wasn't ever going to heal, that it wasn't going to get any better but here I am!!!

I feel amazing!!! My stoma has healed nicely to my skin, although it does like to retract a lot. My rear end is still in the works but it doesn't hurt anymore and I can finally do pretty much anything I want now.

For the first time in 10 years I love to eat! I love to get out of the house and be active! I've never felt so good. Thank you to everyone who was there for me on these posts and helped me through this long process. I love you guys!!!!
__________________
DX with Crohn's in 2004
3 resections w/ appendectomy
Failed Remi, Humira and Cimzia
Tried Asacol, Pentasa, Imuran and all the other usual suspects!
Gallbladder removed
Total proctocolectomy w/ perm ileostomy 10/2012
01-22-2013, 12:10 PM   #2
2thFairy
Senior Member
 
2thFairy's Avatar
 
Join Date: Sep 2010
Location: Dallas, Texas

My Support Groups:
Hooray!!! Excellent, JennaRae!!!
__________________
Ulcerative colitis

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
01-22-2013, 12:24 PM   #3
Misty-Eyed
Forum Monitor
 
Misty-Eyed's Avatar
 
Join Date: Feb 2010
Location: United Kingdom

My Support Groups:
So glad you are getting on well! Long may it continue!
__________________
Michelle

'You can't change the past but you can ruin the present by worrying about the future.'

Diagnosed with Crohn's colitis aged 9, 1992.

Panproctocolectomy and terminal end ileostomy October 2011.
01-22-2013, 01:11 PM   #4
JennaRae
Forum Monitor
 
JennaRae's Avatar
 
Join Date: May 2012
Location: Keller, Texas
Thanks!
01-22-2013, 02:42 PM   #5
Terriernut
Moderator
 
Terriernut's Avatar
 
Join Date: Dec 2010
Location: United Kingdom

My Support Groups:
Wishing you continuing health and happiness!
__________________
Misty
DX Crohns Feb 2011, symtoms 1997, 2009 and then WHAM! Emergency surgery for perforated sigmoid, fistula through fallopian tube, septic and near dead: Colostomy-Stan was born 22/12/10. Another parastomal hernia, his name is Ollie and he is MONSTER size!
4gm Pentasa
6MP 50mg
01-22-2013, 03:47 PM   #6
Minionaire
 
Minionaire's Avatar
 
Join Date: Nov 2011
Location: Edinburgh, United Kingdom

My Support Groups:
JennaRae this is great to hear and comforting for those on similar journeys. I wish you continuing success, Dave.
__________________

Dx - Crohn's colitis, 2005

Pan-proctocolectomy and end ileostomy surgery. Alf the stoma born 23rd Feb 2013.

Re-Dx - Ulcerative Colitis, Mar 2013 (Post surgery pathology on my removed colon concluded my "Crohn's" was actually UC!).

My surgery blog: http://davesbelly.blogspot.com
01-26-2013, 05:58 PM   #7
Snap
Senior Member
 
Snap's Avatar
 
Join Date: Nov 2011
Location: Illinois

My Support Groups:
::

JennaRae----I am 13 months out from same surgery and I am STILL amazed with eating and not being sick! Keep smiling! Dana
01-27-2013, 11:00 AM   #8
Dukeis
Dynastic Overlord
 
Dukeis's Avatar
 
Join Date: Sep 2012
Location: Cabot, Arkansas

My Support Groups:
This great to read success stories like yours. Hopefully 3 months after my surgery I'll be able to share great results also. Thanks for sharing!
01-27-2013, 09:04 PM   #9
annawato
Moderator
 
annawato's Avatar
 
Join Date: Apr 2012
Location: sydney, New South Wales, Australia

My Support Groups:
Fabulous news, and great to hear a good news story too.
__________________
Anna

you name it, i've tried and failed it! currently on- waiting to see whats new and reducing pred
temp. ileostomy reversed feb 2011, new ileostomy, nov 2012
4 resections plus removal of adhesions etc, recurrent intestinal abscesses
lyme disease, depression, sacroileitis, chronic pain and......Crohn's..........
01-28-2013, 04:11 AM   #10
hainman
Senior Member
 
hainman's Avatar
 
Join Date: Apr 2010
Location: glasgow, United Kingdom

My Support Groups:
great news,im awaiting a date with the surgeon,although the buggers seem to be dragging their heels somewhat.
good to know it doesnt take THAT long for healing,i might make my summer holiday if i get a surgery date in the next month...

Enjoy your scran(food).....

Craig
01-28-2013, 04:56 AM   #11
rollinstone
Senior Member
 
rollinstone's Avatar
Glad to hear your Doing well, excuse my ignorance people people, once you have a total proctocolon surgery, and ileostomy, stoma etc, does this effectively remove Crohn's effecting the digestive Tract? I have heard surgery can cure UC but not Crohn's coz it can appear anywhere from your mouth to your butt... I guess my question is, if you had a flare up after surgery how would it effect you?
01-28-2013, 05:06 AM   #12
Minionaire
 
Minionaire's Avatar
 
Join Date: Nov 2011
Location: Edinburgh, United Kingdom

My Support Groups:
Hi Joshuaa, here's my understanding.

You are right, the removal of the colon does not cure crohns but for a Crohns colitis sufferer like me (I.e. my Crohn's has only ever been active in my colon) my consultant thinks the proctocolectomy surgery provides me with a good chance of a permanent remission. However there is always a chance it could start affecting other parts of the digestive tract at a later stage.

For others where crohns affects the small intestine aswell, the proctocolectomy will probably not lead to permanent remission.

Hope this helps,
Dave
01-28-2013, 05:22 AM   #13
rollinstone
Senior Member
 
rollinstone's Avatar
Thanks for the response, my Crohn's is in the colon aswell
01-28-2013, 04:46 PM   #14
JennaRae
Forum Monitor
 
JennaRae's Avatar
 
Join Date: May 2012
Location: Keller, Texas
Millionaire hit it right on the nose!
Reply

Crohn's Disease Forum » Surgery » Stoma Subforum » 3 months after total proctocolectomy
Thread Tools


All times are GMT -5. The time now is 01:33 AM.
Copyright 2006-2017 Crohnsforum.com