Discovering What an Ileostomy Bag Really Means

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890
Random
Dec 14, 2011 7:14 am

I remember going to a check-up following a 6-week stay in the hospital and the doctor telling me, "It's time to start talking about surgery."

The doctor then started a lengthy explanation of what an ileostomy is and how it can "cure" my UC. I didn't pay much attention after that because all

I could think of was no more steroids, no more awkwardly going back into school after not being in for 2 months, and most importantly, hanging

out with friends, playing sports, and being a normal teenager. As I left the hospital, I started thinking how a bag could be inside me and not

break (back then I had no idea the pouch was external). I was so psyched for the operation, I was counting the days until the 21st of October.

I eventually YouTubed "ileostomy" because when I told my friends I was going to go in for surgery, I didn't know how to explain what I was getting.

Myself and 2 friends hovered around the computer and I found a video "how to change your ileostomy pouch." I was thinking to myself, "Why would

you need to change it -_-?" I watched the video and my friends and I made some squirmish noises as we watched the video. I was shocked, scared, and

didn't want the surgery. I remember thinking, "How am I going to live like that? All my friends will think I'm a freak, and what girl would want a boyfriend with 'that'."

I was told to go in on the 19th to begin prepping for the operation. The next day, the stoma nurse came in and started drawing on my belly and asked, "How high do you normally

wear your trousers?" and went in depth about what an ileostomy is. The day of the surgery finally arrived, the operation lasted 8 hours, it was done laparoscopically (I was the first patient in Ireland to get the

operation done 100% laparoscopically). I remember waking up being lifted onto my bed and saw my mom and dad briefly, my parents said I was up for an hour but how

was I supposed to remember? I was heavily medicated (high as a kite :D). I eventually got up again and I was in the worst pain of my life. I instantly regretted having the operation.

I was in the hospital for another month due to some complications (I'll explain in another blog). After a couple of months, I was fully healed and felt so good not being on

any medication, not being fluffy/chubby (I was actually really fat, but my friends said fluffy instead to make me feel better), and wasn't known as "the sick kid" anymore.

Anyway, I was just wondering, did anyone else not know what a "bag" was after talking to their doctor about the operation the first time?

And if you're reading this before having done your surgery, I'm going to keep it real, there was a lot of physical pain, you're definitely going to become self-conscious

but it eventually gets better, it's going to feel like it takes forever but you'll get there.

Two days after my operation = Regretted the ileostomy. Two years after my operation = Best decision ever made.

IHateColons
Dec 14, 2011 3:31 pm

I didn't know what an ostomy was until I woke up with one. I had to have emergency surgery because my colon ruptured in 2 places because of UC. I was in a coma for 5 days, then woke up to find a bag taped to my tummy. I didn't look at my abdomen for 23 days because I was so depressed about it. But now, I love it! I think ostomies are beautiful because mine saved my life! :-)

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luv2laf07
Dec 14, 2011 3:27 pm

I had heard the term colostomy bag prior to my own surgery but had no idea what it meant. When they told me I had cancer, they said I would need a temporary or permanent colostomy. When they described that they would remove my rectum and sigmoid and I would be excreting through my abdomen into a bag, I thought it was some kind of sick joke. They sent me home with a video and I too was none too excited for the surgery. But when I consider the alternative, dying from cancer, it's not a bad trade. It's been 15 years now and I can't believe how fast it's gone! So glad you were able to come to terms with it and have a better life now!

Franicaa
Dec 15, 2011 9:38 pm

I was just told you need an operation today and woke up 8 hours later with a bag. I didn't know what it was for like a week until the stoma nurse explained. I hated it but now it's a permanent ileostomy and I feel amazing. It's not a big deal. It doesn't bother me, so why should it bother someone else? And if a guy doesn't like me because of it, then he obviously isn't worth it. So glad to hear you're loving it now :) I think everyone comes around sooner or later!x

Random
Dec 16, 2011 5:14 am

@IHateColons I thought I had it bad. I'm sorry to hear that you had to go through all that, but at least you lived to tell the tale. I wish you the best that life has to offer and remember carpe diem. @luv2laf07 I thought it was a form of torture used in Guantanamo Bay when I first realized what it was, but as we all now know, it improves the quality of lives for so many people out there and potentially saves lives, as it did for yourself and IHateColons. @Franiccca I think everyone goes through that stage of hating it in the beginning. It's not like you wake up after the operation and say, "I love this bag." I know I didn't. Does everyone know about your ileostomy though? Personally, only my close family members (brother and parents) and a dozen of my closest friends know. There have been a couple of people that have found out along the way that I didn't intend on telling, and it doesn't bother them either, and why should it? I didn't ask for this bag, no one does. You just have to accept it and move on. Everyone will come to terms with it eventually, the sooner the better. Nice to know you've accepted it and love it too :)

 

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Past Member
Dec 16, 2011 1:27 pm

Welcome along, Random. It's good to see another Irishman online here. I think you'll find it a wonderful place to share views and have a good laugh too. It's been a lifesaver for me. I was a bit like Franicaa about finding out about the bag, but have been ever grateful for a good surgeon and bag for saving my life. I've not been a bit shy about letting folk know what happened and try not to make such a big deal about it. Here's wishing you well with your studies. I assume you continued on after the surgery. I hope you've joined one of your local support groups... the one here in Sligo is brilliant and a great way to chat about any problems you might have... just like here. Take care, Colm