Hello from the Hospital with my new Ileostomy! :)

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80sChick
Veteran Member


Date Joined Oct 2009
Total Posts : 1054
   Posted 3/21/2010 4:16 PM (GMT -6)   
Hi everyone!!
Surgery was Thursday (3 days ago) and I am doing ok! I was put on jello/liquids Friday and Saturday, ate some crackers Saturday, and then today (Sunday) I've had a little bit of a bagel, crackers, jello, very mashed potatoes, and even a little tiny bit of a Wendy's frosty! My ostomy (her name is Zoe!) is doing great and I only have 3 small incisions. One is a drainage one where they had a drain inserted that REALLY was hurting me until they took it out today, and it's been a huge difference. I've been walking as much as possible. I really want to get out of here. I got my catheter out yesterday but have been having a LITTLE trouble getting my bladder to wake up (tho I do have a history of bladder problems, so that is why). I'm doing everything I can to avoid re-catheterization because that would SUCK SO MUCH, so I'm walking and trying to stay positive. My rectum is sore because they sewed it up and that's making it hard to pee too. Seriously though, otherwise I am doing well. Everyone is saying how much better I look than even surgery day; I'm sure it's just good to have that inflamed colon out of me.
 
Tomorrow I meet with my ostomy nurse to learn how to use all my appliances and take care of Zoe! :) I REALLY hope I can get out of here. I am very depressed in here even though my mom is here every day with me. I am just nervous to have to get re-catheterized, and I just want to be in my own bed so I can SLEEP and not have to rely on nurses who are often wayyyy too busy taking care of other patients. I am VERY VERY lucky to have my own room though...like 3 normal TV channels though.
 
Anyway, just wanted to update everyone. Thank you all so much for your support and kind words; it has given me a good idea of what to expect. My stomach is still verrrry small from not eating for so long but I am taking it slow! Anytime Zoe makes noise I am so proud--it means she is doing her job! Already my output is mostly brown and not green anymore. Still pretty liquidy though. I am so glad I have made it through this many days. Just can't wait to be home.
 
PS Another thing that I'm thinking is weird--my surgeon has reduced my pred today from 40 to 25!!! That seems very drastic but I guess I don't have any Crohn's symptoms to worry about exascerbating...we will see how that goes. I am weary. He said all of my inflammation went from my rectum up to just an inch or so before my small intestine, so he got it all! Wish me luck.


Stephanie, 28 years old
Diagnosed with Crohn's Colitis March 2000
Possible diagnosis of IBS-D
 
Tried Meds: Asacol, Remicade, 6mp, Humira, Xifaxan, Apriso, Imuran, Rowasa Enemas, Colocort Enemas.
 
Tried Probiotics: Align (with no change except bloating) and VSL #3 DS (AWFUL diarrhea).
 
Currently on: 40mg Prednisone (Been on it since June '09...get me off!!), Psyllium Seed Powder, Prenatal Vitamin, Vitamin B 12 Complex, Vitamin D, Calcium, Vesicare (for urinary retention). 

Post Edited (80sChick) : 3/21/2010 4:19:38 PM (GMT-6)


Chasblah
Veteran Member


Date Joined Feb 2007
Total Posts : 788
   Posted 3/21/2010 4:32 PM (GMT -6)   
great to hear you are doing well!
it's really going to get even better.

don't expect to have to use the appliances they give you in the hosp. I HATE those. There are such better ones.
Chassity
28 yrs. old. married with one beautiful daughter (born 11/20/07)
-diagnosed with severe pancolitis u/c 2002 had total colectomy 12/19/08; emergency surgery due to abscess-had to redo ileostomy and switch to left side 12/25/08; 2/15/09 found blood clot in superior mesenteric vein (prob. from inf. and surgery inflammation)
i only take vitamins now, when I WANT to. :)
(temporary ileostomy....maybe)

"Things turn out the best for those who make the best of the way things turn out."


Collicat
Veteran Member


Date Joined May 2009
Total Posts : 827
   Posted 3/21/2010 5:55 PM (GMT -6)   
I am so happy to hear that you are doing well and that " Zoe" is behaving. lol. Soon you will be home and doing great. Just remember to CHEW,CHEW,CHEW and WALK, WALK, WALK and then walk some more! And go really easy on the food!

Cathy

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 3/21/2010 5:57 PM (GMT -6)   
they reduced my pred pretty fast too. i went from 15 to 10 everyother day. for like 5 days, then 5 for every three days or something.
The pain pills can make you kind of off feeling too, and being in the hosptial is depressing!
you will be able to take care of your ileo! its much easier than it seems! I never thought i could change it alone, but i can now!
And you know we are here to help with anything!
YAY for being healthy!
UC for 8 years, before finally kicking its butt and having a permanent ileostomy April 17 2007! 
-I have gone to find myself, if i get back before i return, keep me here-


Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 3/21/2010 6:07 PM (GMT -6)   
That is AWESOME :-) You sound great...you'll be home before you know it!!!

p.s. I haven't done this, but a friend of mine always does a straight catheter if she has problems post op...it's a one time thing that usually just 'jump starts' everything and she'd never had to be re-cathetered with a bag...might be something to ask for?!
Crohn’s dx 1989
some terrible years before my
Proctocolectomy in 2008


Allison77
Regular Member


Date Joined Feb 2005
Total Posts : 421
   Posted 3/22/2010 11:00 AM (GMT -6)   
YAY 80schick!! Im so glad your headed down the road of recovery!! We were all pulling for ya!

-Allie
-Allie
RX Crohn's 1999, over 30 surgeries, 3 strokes, permanent colostomy and rectum removal.
 
"The most unfortunate thing that happens to a person who fears failure is that he limits himself by becoming afraid to try anything new."


killcolitis
Veteran Member


Date Joined Dec 2009
Total Posts : 2396
   Posted 3/22/2010 11:22 AM (GMT -6)   
I have been thinking of you. Great to hear you're well and here's to many years of health!

Hischildvalda
Regular Member


Date Joined Feb 2010
Total Posts : 175
   Posted 3/22/2010 12:44 PM (GMT -6)   
It sounds like you are doing so well, Stephanie!  Woohoo!  Keep doing what you are doing! 
1999 Fibromyalgia and all the fun stuff that goes with it came to live with me.
 


Clicky
Regular Member


Date Joined May 2008
Total Posts : 166
   Posted 3/22/2010 1:59 PM (GMT -6)   
Great news! I hope you can come home soon! Take good care of yourself.
Diag proctitis 97 - major flare and extension to left sided colitis Aug 2006 - present.

I have bled every day since Aug 2006 (I quit smoking in June 2006).

Imuran (Azathioprine) game me liver damage. LDN no luck.  Asacol and mesalazine enemas - seemed to make worse. Lots of Prednisone :(  No luck on drugs!

JPouch, total colectomy and ileostomy (part 1) completed Jan 2010 :)

UC no more!!!
 


flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 3/22/2010 5:44 PM (GMT -6)   
Stephanie, I'm so happy for you! You and Zoe are doing great! yeah Hope you get to go home soon!

Cecilia
Dx'd Crohn's in '99 at age 28. Proctocolectomy and permanent ileostomy in '06.
Disease-free and medicine-free since surgery and very thankful to be healthy again.


80sChick
Veteran Member


Date Joined Oct 2009
Total Posts : 1054
   Posted 3/22/2010 7:55 PM (GMT -6)   
Wahoo! I'm home tonight, still very sore of course but so glad to be home. That helps a lot. Can't believe I'm home so soon (just 4 full days after surgery) but I couldn't take it in that hospital anymore. My ostomy isn't sore at ALL; just my rectum after having that removed and then my drainage area...my 4 little laproscopic incisions are ok too! I'm amazed. My mom is here with me, feeding me and making me walk. A LOT.

I am a little overwhelmed but relieved that I have all of you and the knowledge that things will just keep getting better and easier. I had to lie down (nearly fainted) today while my ostomy nurse taught me how to do my appliance and Zoe gushed green stool everywhere in the process--that was embarrassing. But it will get better, I know. I am just so glad to be home. :)
Stephanie, 28 years old
Diagnosed with Crohn's Colitis March 2000
Possible diagnosis of IBS-D
 
Tried Meds: Asacol, Remicade, 6mp, Humira, Xifaxan, Apriso, Imuran, Rowasa Enemas, Colocort Enemas.
 
Tried Probiotics: Align (with no change except bloating) and VSL #3 DS (AWFUL diarrhea).
 
Currently on: 40mg Prednisone (Been on it since June '09...get me off!!), Psyllium Seed Powder, Prenatal Vitamin, Vitamin B 12 Complex, Vitamin D, Calcium, Vesicare (for urinary retention). 


Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 3/22/2010 8:55 PM (GMT -6)   
Now you'll really be able to recover:)

Don't worry about those things...just a suggestion: sit in a chair for your changes until you are more comfortable:) You'll be a pro in no time!
Crohn’s dx 1989
some terrible years before my
Proctocolectomy in 2008


hvacchronie
Regular Member


Date Joined Oct 2009
Total Posts : 43
   Posted 3/23/2010 5:38 AM (GMT -6)   
tongue So glad to hear you're doing well! Congratulations on your new lifeyeah !

Brian84
Regular Member


Date Joined Mar 2005
Total Posts : 452
   Posted 3/25/2010 6:19 PM (GMT -6)   
80's chick... Glad to hear you are doing well.
I've read some of your threads leading up to this one and I am in a similiar situation as you were. I've been on pretty much every medicine and my doctor finally suggested surgery. I actually met with the surgeon and asked some questions, but he really didn't explain much. I went from thinking I could get a temporary ileostomy to having to have a permanant one. To tell you the truth I am kinda scared. I am not scared of the surgery at all, but about all the things that I would be unable to do.
I like how you have had a postive attitude through this whole deal.
If its ok with you can you email me cause I have like a million and one questions for you about the surgery. I would feel more comfortable talking to someone who has recently experienced it then just a doctor.
Quickbird86@yahoo.com
Brian

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 3/25/2010 6:41 PM (GMT -6)   
Brian, there are no things you will be unable to do with an ileo! In almost three years, i havent found one thing that my ileo has kept from doing, but i have foudn alot of things i can do because of it!
UC for 8 years, before finally kicking its butt and having a permanent ileostomy April 17 2007! 
-I have gone to find myself, if i get back before i return, keep me here-


flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 3/25/2010 6:42 PM (GMT -6)   
Stephanie,

I'm so glad you're home! Aww...Zoe was just doing her best impression of Linda Blair spitting up green stuff in the Exorcist! shocked It won't be green for long, that's just bile.

I went home from my proctocolectomy surgery after 4 days, too. Isn't it amazing? Did the surgeon recommend that you pack the butt wound with saline-soaked gauze? I did that twice a day until it healed up to keep it from getting infected.

Make sure you get plenty of rest. Your body does a lot of healing while sleeping.

Hang in there, every day will get better! :-)

Cecilia
Dx'd Crohn's in '99 at age 28. Proctocolectomy and permanent ileostomy in '06.
Disease-free and medicine-free since surgery and very thankful to be healthy again.

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