Going from Stupid Questions to Nervous Nelly

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

schrek-chewbacca hunk
Veteran Member

Date Joined Jun 2005
Total Posts : 2666
   Posted 1/16/2009 2:56 PM (GMT -6)   
I am probably restating this, but this is of major (I mean big ole can't get my mind off it) concern.
I am reading where people here are having leakage problems - and if I am going to be leaking - what is the difference between having an accident in a diaper where I can clean up and most people wont know since I am wearing a diaper - vs. in front with an image of waste streaming all over myself and my bed and clothing.
I recognize this is fear speaking - but I need to know will this be my reality too?
sorry for the downer question,
worrying dreadfully bob 

Veteran Member

Date Joined Feb 2006
Total Posts : 5698
   Posted 1/16/2009 3:03 PM (GMT -6)   

You will learn how to manage the ostomy with the help of the ostomy nurse. Sure, you will encounter problems, leaks, skin issues, appliance fit issues, etc. but those issues will work themselves out after you become more knowledgeable of your new plumbing. It will not be perfect in the beginning but you will master it. I only had an ostomy for 8 weeks but learned quickly how to avoid problems. Try not to get too anxious about the details and focus more on your soon to be improved health!

dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free

vette guy
Veteran Member

Date Joined Nov 2006
Total Posts : 650
   Posted 1/16/2009 3:11 PM (GMT -6)   
For starters, the only stupid question is the one that isn't asked!!
Secondly, I haven't had a leak in public in over 19 years, and I'm a VERY active guy! Most leaks occur in the beginning, and are almost always caused by the person and not the appliance. Either the appliance was left on too long, or wasn't applied correctly. In the beginning we're not exactly experts at changing our appliance. You should expect a leak or two until you really get the hang of it. It really is trial and error for a little while.
But, what you're feeling is quite normal. Once you've had the surgery, and you're out and about, you'll start to realize your worries were unfounded.
Plus, who wants to wear a diaper? Not me!!!

Veteran Member

Date Joined Aug 2006
Total Posts : 6571
   Posted 1/16/2009 4:25 PM (GMT -6)   
exactly what they said!
also, if something happens and you have a leak down the front of your pants, the first thought someone has is nto gonna be, oh poop! it's gonna be that you spilled something on yourself. Someone on here had a coke and just pretended that was it, lol.
Also, as a general rule, it isn't like a huge flood of stuff, it's like a little trickle, you catch it, then it's over.
Like vetteguy said, it's usually user error and after a few times you will get it down pat! most of thepeople withthe leaks are people who are new at it!
DONT be nervous (yeah right, tlike that's possible, lol) just remember how sick you are now, and how muchbetter you are gonna feel soon!

Veteran Member

Date Joined Nov 2006
Total Posts : 552
   Posted 1/16/2009 4:46 PM (GMT -6)   
Bratcat only had one noticeable leak. She turned over in bed when she was full (and enjoying sleep) and it got on her PJs and bedding. Her other "leaks" were minor. She would notice that output would be dribbling (for want of a better word) under her wafer. You could see a line from the ostomy towards the edge of the wafer. If she let it go, it would have the potential to leak onto clothing and such. Generally she would just change it before it got to that point. She never had any accidents with UC but I would guess the reason a leak with an ostomy is better is because 1) there is no urgency or cramping and 2) you are rid of UC and on the mend.

--Mom of bratcat (17 years old) and nonamejames (20 years old)--
Daughter bratcat was diagnosed with pancolitis October 2006
Flared Fall 2006, Fall 2007, Spring 2008
Asacol, Rowasa, hydrocortisone enemas, prednisone, 6-mp, Remicade
7/3/08-Step 1 j-pouch surgery and no more meds!
11/10/08-Step 2 reconnect!
Son nonamejames was diagnosed with Crohns in Spring 2008
Asacol, Pentasa, 6-mp

Regular Member

Date Joined Jul 2007
Total Posts : 275
   Posted 1/16/2009 5:13 PM (GMT -6)   
Chewbacca -

I remember how nervous I was when I found out I had to have my ostomy. To my surprise, my ET nurse turned out to be pretty much my 'friend'. We had SO many discussions before the surgery, she really put my mind at rest. She also gave me a book called "The Bag Lady" by Sandra Benitez. This woman is a successful fiction writer from Minneapolis. I think everyone should read it before their surgery. My whole family did! (I met her and she even signed my book!) To this day, I still don't like having an ostomy, but through this, I learned how to live with it...


I'll try to give this Stars Wars analogy:

Your ET nurse, if she is a good one will be your Force. If she's not, find another one.

Don't underestimate the Force!

Use the Force!

May the Force be with you ....
Crohn's Disease, Colostomy due to cancer and I make darned good dill pickles.

Veteran Member

Date Joined Jul 2007
Total Posts : 2765
   Posted 1/18/2009 3:24 PM (GMT -6)   

Love the Star Wars analogy! smilewinkgrin

Bob - I've had an ileostomy for 3 years now and have never had a leak, so it's not a common occurence. I keep an extra set of supplies in my car, just in case, but I've never had to use them.

No worries, mate! :-)

Dx'd Crohn's in '99 at 28. Proctocolectomy and ileostomy in '06.
Disease-free, medicine-free, and very thankful to be healthy again :)

New Topic Post Reply Printable Version
Forum Information
Currently it is Saturday, September 22, 2018 9:13 PM (GMT -6)
There are a total of 3,005,770 posts in 329,263 threads.
View Active Threads

Who's Online
This forum has 161801 registered members. Please welcome our newest member, kissel123.
311 Guest(s), 3 Registered Member(s) are currently online.  Details
GoBucks, Vdang2k, ks1905