To Praying4Healing, Ash83 and ConsideringABag

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

Regular Member

Date Joined Jan 2008
Total Posts : 70
   Posted 1/17/2008 10:48 AM (GMT -7)   
Hi guys, i'm kinda of new to this site and was just reading the mail on where Praying4Healing is thanking the both of you for the pictures of the ileostomies, i'm due my opp on the 24th of Jan and was wondering if you could give me some advice. talking to people here has made it more easier to have the surgery. i'll post this and write more as my computer is playing up and i might lose what i have written.
Samie xxx

Regular Member

Date Joined Jan 2008
Total Posts : 70
   Posted 1/17/2008 11:00 AM (GMT -7)   
Hi again, Also as i'm frm the U.K i find it that we have different times the time here is 5;50 pm and i don't know wat time to come on so that i can chat to people.

Anyway I'm 30 yrs old and have three children i've had UC since June 2001. recently it's got worse, well it's been a couple of years i've been on steriods and nothings working. they put a camera in and found out a couple of months ago that the whole of my colon is effected, they suggested surgery and i was supposed to have surgery in the first week of dec, then that got cancelled, then i was given a date fore the 3rd of Jan and that got cancelled i was so upset cos everytime i got my self ready for the opp and my children were emotionally upset, this goes and happens i hope thy don't cancel the next app which is the 24th of Jan.

i love this site and cant thank everyone enough for all the advice, i found this site when i was upset that they cancelled my date and i always believe that something good always comes out of bad, i would never have found this site and would not be this confident about the opp.


samie xxx

Veteran Member

Date Joined Dec 2007
Total Posts : 739
   Posted 1/17/2008 11:02 AM (GMT -7)   
wow lipgloss, you and i will definitely have to keep posting. Ur due for yours on the 24th and I'm due for mine on the 29th. My pre admission is the 22nd and my ostomy nurse hasn't called me back with an appt. yet. I'm sure Ash and considering will be along to give u advice from experience but some of the great things that i learned from them are:

1) i'm going to take a pair of jeans i like when i visit the ostomy nurse, to help better with the placement of my ostomy

2) I will be requesting that the catheter be placed while im in surgery ( when they tried to give me one while awake, it was extremely painful for me)

3)I will "try" my hardest to get up and walk when able (this is a big step for me b/c i tend to get depressed in the hospital and only get up to go to the bathroom)

4) I will bring some type of gas-x pills with me, b/c they say after the surgery the gas can be pretty painful and it takes a long time for them to get approved in the hospital

Those are the main things i can think of right now, but i check the site from my sidekick so if I think of anything else i'll be back :O). But as i said before, these people are awesome. they give the best advice!! Keep us posted!
25 y/o female- crohns disease since 14
Ileostomy pending-very worried
Tried asacol,pentasa,prednisone,remicade,6mp,azasan, no avail
Seatons placed
Worst year ever!

"For God has not given us the spirit of fear....."
Where does mine come from?!

Regular Member

Date Joined Jan 2008
Total Posts : 70
   Posted 1/17/2008 11:05 AM (GMT -7)   
Am still scared need all the advice i can get, cos i'm not a very confident person espacailly when it comes to how my body looks, even though thats the last thing on my mind at the moment i know i will be worried about it later.

Things like how will i look? will u b able to tell i've got a bag? will i leak in the middle of nowhere and will my bag be on the floor without me knowing?

i know this is silly but everyday i have something new to think about.

Please help

samie xx

Glad Bag
Veteran Member

Date Joined Mar 2007
Total Posts : 699
   Posted 1/17/2008 4:47 PM (GMT -7)   
oh, the great fear of the unknown!

lipgloss, rest assured that if you have truly been sick from the disease up to this point, you will undoubtedly feel better after the surgery. Of course you are justified to he horribly scared and upset while anticipating the operation, especially if they keep rescheduling it. This is a huge, scary, change to undergo, but i speak for many of us who have been thru it, that you will likely be eternally grateful to your surgeon after having this operation.

I have had my ileostomy since April of 2007, and I would never think twice that I made the wrong choice.

Your questions can all be answered here, or my your ET (stoma) nurse.

there are many different brands of pouches/wafers you can try out until you find what works best for you. I recommend calling each manufacture and getting them to send you all sorts of free samples. However, you will want to wait until you get out of the hospital, since the size of everyone's stoma is different.

i have never heard of a bag just falling off, though sometimes a leak can happen. In my experience, I have always felt the leak coming before it was visible to anyone but myself, so you will have to cross that bridge when you come to it.

as for pictures of stomas, someone here has posted a link to a site with a few pictures before

(!!!so maybe they could chime in and point you in the right direction?!!!)

otherwise, I suppose we could all post pics of our stomas in the photo album i started for us....i will try to get to it soon.

in the meantime, you can look at all of us who have pictures there if you want....

welcome to our board and good luck!

Nat - aka Gladbag

username: crohndisease
password: 6mp3asa
"The things that make us feel so abnormal, are actually the things that make us all the same" - from PostSecret: Extraordinary Confessions from Ordinary Lives - by Frank Warren

New Member

Date Joined Jan 2008
Total Posts : 16
   Posted 1/17/2008 6:46 PM (GMT -7)   

Lipgloss, I just had my surgery on Dec 21,07 so i'm only 4 weeks into recovery. the worst part of it was when the swelling from surgery went down, and my stoma shrunk in size. My bags were too big, and left pealing, and even my skin bleed. It was horrible. But once I got some bags that fit right, it was a breeze. I feel better than i have in a long time.  See if your stoma nurse can send you a couple bags of the 'cut to fit'. this way you can cut the bags the size you need, until you can get some from whatever company you order from. The stuff that comes from your stoma is more directly from the stomache than before, so its very acidic, and burns the skin.

I went to visit the women i work with a few days ago, and they couldnt even tell i have a bag. I've lost about 23 pounds, so i'm thinner, but you cant see the bag. I'm really shocked. Its soooo much easier than i thought it too be. Yes, you will feel the leak first.
I did. and i only had trouble with leakage because the bags didnt fit.

Contact Hollister...they sent me samples, and a video about how to care for your stoma...and has pictures and all. The following i found on the internet  to conact them form the uk. I hop this all helps. Relax, it will all be fine. You will feel better that you ever have.

If you have questions regarding Hollister products and services or if you would like to speak to a member of our Customer Care team, please call freephone 0800 521377

Veteran Member

Date Joined Aug 2006
Total Posts : 6571
   Posted 1/17/2008 8:59 PM (GMT -7)   
if you don't feel the leak, you will smell it! i promise! anyway, do check out the photobucket pics of us, i guarantee you won't be able to tell! i put a photo called "can you tell" with two pics of me, one with the bag, and one without, and until peggy gave away the answer (still gonna get her for that one! LOL) noone could tell.
your output will become less acidic as you start to eat more normal foods, and then it won't irritate you as badly. You have children, so i am betting that nothing grosses you out! So, don't worry about that. I think that the stoma looks kind of weird, and i really don't like to look at it, but i only have to when i change the bag, and some people can go a week without changing the bag.
dont' feel silly for worrying about things, i got worried about not being able to do a cartwheel a few weeks before my surgery! it's normal to find all kinds of things to worry about, but you will be fine, and you will be happy!

Veteran Member

Date Joined Aug 2007
Total Posts : 1998
   Posted 1/18/2008 12:24 PM (GMT -7)   
tehehehehehe yeah    Yep, I guessed where the answer was located, BUT I couldn't tell what picture was with and what picture was without! 
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 

New Topic Post Reply Printable Version
Forum Information
Currently it is Friday, December 15, 2017 8:44 PM (GMT -7)
There are a total of 2,905,994 posts in 318,907 threads.
View Active Threads

Who's Online
This forum has 158253 registered members. Please welcome our newest member, Jessica Jaroff.
309 Guest(s), 10 Registered Member(s) are currently online.  Details
19tarpon47, Keylyme, dipson, Worried386, SomeonesMom, Girlie, rafaeltoral, Pratoman, JGB, Jessica Jaroff