How likely is a leak?

[Marx]

Hey guys,

I met with my surgeon and he explained that because I'm on predniselone, so underweight and malnourished, I may need a temporary bag in fear of a joint failure and to let the gut rest for a while. He said he'd make the call on the day but ultimately it's my decision. Little background, I'm 23 and still at Uni. I cannot even imagine having a bag and its probably my worst nightmare so I'll probably tell him to join me up and risk it either way.

My question is, how likely is a leak with an ileal resection considering my circumstances? I'll be having around 30-40cm removed and its at 2 different parts (Ie. I have a diseased part, a healthy part and then another diseased section.)

Thanks

 

[UnXmas]

I can't say what the chances of a leak would be. Your surgeon might be able to give you an educated guess, but no one can really know the outcome.

Can I ask what your concerns are about a stoma? I'm only a little older than you and getting a permanent ileostomy soon and I can't wait. If you do ever end up with one, it will be because it decreases the risk of major complications in your future and/or offers you an improved quality of life.

 

[Marx]

I can't say what the chances of a leak would be. Your surgeon might be able to give you an educated guess, but no one can really know the outcome.

Can I ask what your concerns are about a stoma? I'm only a little older than you and getting a permanent ileostomy soon and I can't wait. If you do ever end up with one, it will be because it decreases the risk of major complications in your future and/or offers you an improved quality of life.

I just can't imagine my life with a bag. Won't it restrict me? My Uni, sports, socialising? How would it fit around my clothes? Who wants something sticking out of their stomach? I know it'll only be for 6 months or so but still.

He did say its not definite, he'll try join me up as normal first but if he suspects a leak then he'll fit a stoma. I don't know, I'm just really worried. I think it might just be a fear of the unknown.

Have you had a bag before?

 

[gracifer]

I just can't imagine my life with a bag. Won't it restrict me? My Uni, sports, socialising? How would it fit around my clothes? Who wants something sticking out of their stomach? I know it'll only be for 6 months or so but still.

He did say its not definite, he'll try join me up as normal first but if he suspects a leak then he'll fit a stoma. I don't know, I'm just really worried. I think it might just be a fear of the unknown.

Have you had a bag before?

I'll be honest with you.. I'm 23 and saw it as my worst nightmare coming true when I got a temporary illeostomy.
Firstly there are LOADS of different types of bags out there that you can use if, say, the first bag doesn't work out too well.
Secondly, it put me into remission which after 2 years of being incredibly sick was a godsend. It doesn't mean I do like the bag, believe me at times I truly hate it. I used to have to get my parents to help me change it but now I can do it for myself!
I've had it for 7 months so far, and actually the longer you have it for the easier it gets. I wear leggings and dresses, but there are certain types of clothes were it does show, however, there are things that you can buy that stop it from showing! (I just haven't got around to it yet as I'm really lazy ha!) Believe me that was a huge worry for me too! But at the same time people don't notice it even if it does stick out.. it's just your perception that everyone is looking at it.
I currently gym it every day, and also going cycling so I doesn't stop me from doing sport. However I have been toldt o be careful on the weights side of things in case I cause damage!
Socialising isn't a problem either. I can go out clubbing and drink. I mean, you may have to empty it slightly more then you usually do as the alchohol makes it more liquid but at the end of the day I've never really had a problem clubbing or anything.
You can pretty much lead a normal life. Also, if it helps google ostomy blogs. There's a lass in Canada I think whose a face of ostomies, I think her blog is called uncover ostomy or something. It really REALLY helped/helps me. But as I say there are loads of blogs around...

At the end of the day the bag is worth it if it helps your bowels to rest and to help you get a better life quality then I say go for it. Yes it's horrendous and scary and everything but I am so pleased I got mine because it's given me what I really wanted which is remission.. If you want to talk then PM me, because I felt exactly the same way as you do! I hope this helps!

 

[UnXmas]

I just can't imagine my life with a bag. Won't it restrict me? My Uni, sports, socialising? How would it fit around my clothes? Who wants something sticking out of their stomach? I know it'll only be for 6 months or so but still.

He did say its not definite, he'll try join me up as normal first but if he suspects a leak then he'll fit a stoma. I don't know, I'm just really worried. I think it might just be a fear of the unknown.

Have you had a bag before?

I haven't had one yet, but a member of my family has - you can't tell it's there when he's dressed.

I've met with a stoma nurse, and she told me you can do any sports you want.

What kind of socialising are you talking about? My illness already restricts my socialising somewhat - not enjoying eating out, feeling tired, needing bathroom breaks, etc. For me, the ileostomy will mean a lot less time in the bathroom, no more incontinence pads, and a lot less pain and discomfort.

Have you met with a stoma nurse yet? They are there to help you with the mental aspects of a stoma as well as the physical.

And to be honest, compared to many things that have happened to me in my life, a stoma does not even come close to being one of the worst. I guess if it's your worst nightmare you must have had quite a trouble-free life so far.

 

[Marx]

Gracifer, I guess we're in exactly the same boat lol. Thanks for that, you make it seem like you're living your life as usual even with it, which is my biggest worry to be fair. Cheers for the site recommendations, I'll defo have a look. You're right, remission is the most important thing, I'm just hoping to achieve it without the bag. I'll message you with any questions I might have if that's ok with you. I appreciate your response loads.

 

[DJW]

I've had my ileostomy for 28 years. It greatly
improved my quality of life. I could not contue on the way
I was going (19 at the time). I went to college and then
university (graduating from both). I cycle, play hockey
and softball with it. Swimming is only a problem
in salt water; wafer peels off. Believe me, it's a lot
to take in but it isn't the end of life. For me
it was the start of life.

 

[Marx]

UnXmas, no haven't met the stoma nurse yet. I'm the same, I can't go and socialise at all at the moment, always indoors. Eating out is a headache and usually ends up in coming home early and in pain.

Sorry to hear about your troubles. I guess apart from the crohns I haven't had any other problems thankfully.

 

[Marx]

DJW, that's very encouraging. Everyone seems like life as usual. Many more years to come hopefully!

 

[gracifer]

Yeah that's cool