New ileostomate here

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Regular Member

Date Joined Aug 2006
Total Posts : 41
   Posted 8/26/2006 2:38 PM (GMT -6)   
Hello...I'm a new ileostomate here, having had a colectomy/mulitiple rectal and vaginal fistula removal as of last Thursday at the Cleveland Clinic.  My ostomy may be reversed in the next few months if the rectum heals correctly after all the fistula activity was removed, but I doubt it.  I've had Crohn's for 15 years (I'm 36) and this was my first major surgery.  Most of my inflammation was in the colon and rectum.  It had been medically controlled for  most of the time, but after a lupus-like reaction to Remicade over a year ago, I just never recovered; kept flaring without responding to anything except Prednisone (which we all know how lovely that drug is), and the fistulas just kept forming.
But now I'm home with a bag, and I'm just trying to get used to it.  My husband is very understanding, thank God, and my kids are still little enough to not think much about it.  I'm trying not to get depressed, but at times it's hard to be positive.  Yeah, I may not have any more flare ups, but now I have a bag of poop hanging off me!  And my abdomen is swollen, so the bag sticks out a little, and it's kind of hard not to know something is underneath there.  I'm used to wearing low rise jeans/pants, and for the most part, it's a little difficult to hide the bag yet.  I'm hoping once the swelling goes down, the bag will lie flatter on my abs. 
Anyways...I just wanted to shout out to other ostomates out there since I'm new.  Having a supportive family makes all the difference, but it's comforting talking to others who know exactly what I'm going through. 
Thanks for reading/listening,

Regular Member

Date Joined Jun 2004
Total Posts : 231
   Posted 8/27/2006 1:53 AM (GMT -6)   

Hi and hope you are doing ok.  I know it feel so unreal at first, and then if you have a good stoma, and the bag stays on well, you will get used to it.  Depression is normal, so just work thru it.  Mine was the very worst on the 4th month.  I had gotten a bad yeast, and it was a pain.  But the issues that come with the ileo, can be handled, if you have a good medical support system.  I mean like an ET nurse.  I know some areas are remote and don't have them, but you could check with the Dr. and maybe they can find one for you.  I found that even though my family supported me, I still needed support from the other ostomates in the world.  They were of my species, and could relate.  I learned more from these guys than anything else.  Some find that they like the freedom the bag gives them and don't want to be recconnected at all. 



Veteran Member

Date Joined Jul 2006
Total Posts : 1123
   Posted 9/5/2006 1:14 PM (GMT -6)   

Hi - I'm 6 mo post-op for a permanent colostomy and am doing great.  It's still very early days for you.  The swelling will go down and you'll slowly begin to feel better.  I promise!

You went to probably the best place in the US for your surgery.  Lots of folks on UOAA Discussion that travelled hundreds of miles to Cleveland, and are glad they did.  The support they received, and I assume you get as well, is remarkable.

Keep posting, let us know how you are getting along   :-)

New Member

Date Joined Sep 2006
Total Posts : 3
   Posted 9/5/2006 10:30 PM (GMT -6)   

Hi MJD, I too just had surgery (colostomy).  I had UC for 15 years and developed anal canal cancer just last year.  After months of unsuccessful chemo/radiation I've had part of my colon and my entire back passage removed and then some...I have had 3 surgeries since June 27th.  My last surgery was with a plastic surgeon to do a muscle flap to fill a gaping wound in my bottom, so now I have a long scar running down my leg.  I am having difficulty getting used to wearing a bag, as I was wearing low rise jeans and shirts that are form fitting.  I'm 40 years old, and after all I've been through, ya darn right I'm depressed!  Anybody out there with encouraging words or tips and advice would be great if you shared!

Take care everyone

Regular Member

Date Joined Aug 2006
Total Posts : 41
   Posted 9/10/2006 8:06 PM (GMT -6)   
Hi everyone...thanks for the replies. I'm doing ok, except part of my abdominal incision opened up and is draining this yellow pus. My home health nurse checked it out, called my surgeon, and now I have to do wet/dry dressings on it twice a day. It apparently isn't infected, but I feel like I'm oozing fluid from many odd orifices!

So far, the bag is working well, no problems yet. But I'm still tired and don't feel quite right. I'm hoping one day I wake up and feel like myself again. I've had 2 c sections, and had that happen about 6 months afterwards... just one day woke up and felt back in my body. Granted this surgery is more intense, but I can still hope for that day to happen again. I know it's still early...thanks for listening...I can only wait for the day I'm as far along as you all are in you post-op experience and can put this behind me!


Regular Member

Date Joined Nov 2004
Total Posts : 40
   Posted 9/11/2006 12:18 AM (GMT -6)   


Greetings fellow "Gladbaggers"---YES I am a Gladbagger!

I had my first colostomy in 1998-then an illeostomy in 2004.

I've had Crohns Disease for 18 years now. And I tell ya--

it is one "Crappy" disease...Literally.

I have no large colon-no rectum-and lost a portion of

the smalll intestine as well--so I am a "bagger" for life.

BUT the good news is--I am alive--I am 54 years "young"

am about to become a Grandma for the first time and am

very pleased that I am no longer "chained" to the toilet.

I am 5'6" and weigh a mere 110 lbs ( been skinny all my life but the disease didn't help)>>>>>>>>>and ladies-----you dont

have to allow this to turn you into a little old lady. I wear

my hipster jeans and crop tops (Yes at my age and WITH  the ostomy ). yeah

 There are a lot of different styles of "appliances" to choose from.

I wear mini bags..and have no problems.....I wish you all the best

Think POSITIVE!!  **I can't change the direction of the wind, but I can adjust my sails to always reach my destination***

ATTITUDE---Can make ya or break ya--God Bless!!!



"For those who hope in the Lord shall renew their strength.  They will soar on wings as eagles, they will run and not grow weary, walk and not be faint."  Isa. 40: 31 & 32
Love, Joy, Hope, Peace and Lots of Laughter!  Sandee

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