03-09-2007, 07:15 PM   #1


The date is getting closer for my surgery, only 3 more days. I am having a enterectomy, partial colectomy, ileostomy and a recto-vaginal fistula repaired on March 13th. I am terrified honestly. I talked briefly with a nurse who specializes in helping people with stomas and I talked to various doctors yesterday. I just can't imagine being able to wear my clothes over the collecting bag. I don't wear tigh clothes but i just can't believe I will be able to wear my jeans and things. They all assure me that i can but....... I am also nervous about going out in public after I recover. I know I am being silly but... Hopefully the ileostomy will only be temporary but the doctors won't know until they see my insides. Yuck! Is everyone this nervous and afraid before they have this kind of surgery? Thanks for listening to me ramble...

03-09-2007, 08:57 PM   #2
i was pretty nervous, but mine was an emergency deal so I didn't have too much time to think about it and plus i was on some serious narcotics, so I wasn't focusing on much anyways. when i got my reversal though I went through a lot of worry about the worse possibilities. the easiest way for me to deal with it was to just talk to my mom of other family.
03-10-2007, 11:03 AM   #3
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Hi Leigh
I was pretty scared too. I jst sad to myself that it has to be done or do I wanna stay sick and bound indoors for life. So I said to myself.
Self you have to be brave and go for the surgery so I can get part of my life back. I have CD so (myself still talking) just except this fact. I cant change what I have but I can chage my life style.These are the cards I was dealt with so I have to deal with it. I used to ask myself all the time.God why me I did nothing wrong in this life.I'm only sixteen.I'm supposed to be just beging my Life.
So it took me several months to except the fact that I due have CD and it"s not going away so I have to deal with this.So eventually I started dealing with CD asking questions (which at that time an era was hard to do because no-one back then would even discuss it or even herd of CD)mainly Dr's and specialists.Just basicly played it day by day.
Sorry to rumble on but,in answer to your question I was scared too.I think at some point every one is scared when it comes to surgery. Just look on the bright side you will feel a whole lot beter no more pain ( while some after surgery) and you don't have to deal with those darn fistulas,which I still have to deal with. I"m sure that you will get used to having the stoma just think no more accidents,you can change your diet around.as for fitting back into your jeans just buy one size bigger.
You should ask Ruth about the stoma she knows alot about that subject
As for other people eyeballing you,just think that they are starring at your good looks and your hot body lol.That will keep your mind off your bag.
Goodluck and keep us posted. My fingers are Xed

03-12-2007, 11:17 AM   #4
Thanks for ya'lls help. My husband is a big comfort to me and that is a good thing. The no more accident thing sounds great!!! That is one of the worst parts for me in this disease. I have bevome afraid to go out in public. But I am still afraid to go out in public when I have the ileostomy. I DON"T like public restrooms but as i understand it, the bag has to be emptied when it has to be emptied. No waiting. :-( How long does it take before you sort of become comfortable with it?
Today i get to drink the nasty stuff to clean me out. I REALLY don't like that!!

03-12-2007, 02:06 PM   #5
Nancy Lee
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You hang in there Leigh.
We're all holding your hand and thinking positive thoughts.
You will do well and everything will be just fine.

Holding you close in thought,
Diagnosed Crohn's & Colitis-January 1997.

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03-12-2007, 04:12 PM   #6
Hi Leigh, I remember how I felt about my upcoming surgery last June, and I too was terrified. Its perfectly natural to feel the way you are feeling even though you know that what you are having done is for the best. Things will be ok though, you'll be fine, and once you recover from the initial surgery, you'll feel so much better. It's true that you will be able to fit into your jeans, but it won't be for a couple of months. To be honest to begin with its too uncomfortable anyway and the last thing on your mind will be how you look, you'll just want to focus on getting better. I wore tracksuit boittoms for the first couple of months with trainers as I was frightened of falling over!!!!! We all have our own fears lol

Its important to get the place where you have the stoma right. In the UK, the stoma nurses mark on your tummy where the stoma will sit. You don't want it where your jeans or trousers etc usually rest as you won't be able to wear them there afterwards. The stoma bags over here come in 3 sizes although there are loads of different brands. I wear the medium size as the large one is huge and the small one needs to be emptied too often for me. But the small one is ideal for when you wear jeans or go swimming, although I wear the medium size with mine.
With regard to going in public, it really isn't that bad. You can get ostomy sprays to mask any odours from emptying your bag so noone can tell and as the bags are discreet, noone will be able to see that you have one.

I know all this is probably meaning less at this stage but I hope that after the surgery when you see the stoma site and get to grips with changing and cleaning, all this will come to mind and hopefully help in some way. I was quite down after having mine as I didn't have a support site that I could turn to in the first 3 - 4 months and so when I had problems I suffered in silence. This is the worst thing you can do. There are enough people here to help where stomas are concerned so any concerns you may have can be expressed here. No matter how silly you feel they are. Remember if you're worried about it then its not silly. I really hope all goes well for you, I'll be thinking of you. Let us know how you are as soon as you feel able. Best of luck

03-15-2007, 05:47 AM   #7
Hey Leigh,

I'm guessing you've had your surgery by now - I've been praying for you these last couple of days. Like Ruth says, let us know how you're doing as soon as you're well. I will say just now though that your ileostomy will make a HUGE difference to your life and your general well-being - things like what clothes you can wear and when or where to empty your pouch wil seem like minor complications. It may take a wee while to find your feet and your confidence but trust me, once you do, there will be NO looking back.

All the very best to you

Moz xx
03-15-2007, 01:10 PM   #8
Hi Leigh, I know you will have had the surgery by now, but I just wanted to pop in to say, we're still thinking about you and I hope you're ok and recovering well.

Ruth xx
03-23-2007, 07:37 PM   #9
Thank you so much. I came home from the hospital on Monday. The surgery was March 13th. I am not sure how I feel about the surgery yet. Well, right now I don't feel good about it I feel that everybody can see the pouch. It is very warm now here in Gerogia and I am wearing lose shorts and a baggy t-shirt. I feel that everyone that comes to visit me can smell me. Is that weird? I had a small bowel resection, a partial colectomy and an ileostomy. My husband is dealing with it better than me.
03-23-2007, 09:57 PM   #10
Hello leighhi,

I really don't know what to say, I just got diagnosed with ulcerative colitis, I've been dealing with m issues for less than a year and I have yet to be told I need a surgery, so I don't know what it's like to be in our situation, but I as well have been thinking about you and hope you persevere and feel better about things. Your perspective is everything. What I'm trying to say is, that your perception of your situatio will largely determine how you feel about what's happened. I hope you stay strong and have a positive outlook on things and feel better :-)

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