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Worried Dad - Stoma

My 17 year old daughter has been suffering with Crohns for 10 years now. She is in the middle of a flare up and spending time in hospital.

The doctors are talking about a Stoma and Im petrified what life holds for her from this point onwards.

I'm a loving dad and really at my wits end with worry. Am I over reacting - Any advice is appreciated.

Are there other parents out there who can offer me any advice?

Worried Dad
 

Jennifer

Adminstrator
Staff member
Location
SLO
Hi WorriedDad and welcome to the forum! :D

I'm sorry to hear about what your daughter is going through. :( Are they for sure talking stoma or are they mentioning it as a possibility after a resection? Everyone is told that a stoma is a possibility after a resection because the surgeon doesn't know what they will actually be dealing with until they are in there. Many wake up after a resection with no stoma yet a stoma is not the end of the world and could create a better life for her in the future. Its also possible that the stoma can be temporary to allow the colon to rest and heal.

We do have sections on the forum for parents who have children with IBD and for members who have or are going to get a stoma. You'll find a lot of really nice and helpful members in both sections. :)
Here's the stoma section: http://www.crohnsforum.com/forumdisplay.php?f=46
Here's the parent's section: http://www.crohnsforum.com/forumdisplay.php?f=49

Keep us posted on how she's doing. :)
 

DJW

Forum Monitor
I agree with Jennifer. I have a permanent ileostomy. I saved my life. Once I got it I could go to school, work, have a social life. I hope all goes well.
 
Hi worried dad,

I'm a father of a little girl myself so I can only begin to imagine how you must be feeling right now.

I've been on the receiving end of having a stoma, at first I was dead against having one but as many on the forum will tell you I eventually came to love it! The main reason being it gave me pleanty of time to feel and left me feeling really healthy. I had it for about 6 months before my surgeon decided it was the ideal time to reverse it.

No one would really know your daughter had it unless she told them as it doesn't really show that much. In the mean time there are lots of nice clothes that are on trend and can help hide the shape of the bag a little more. As for the appliances themselves they have come on in leaps and bounds and don't smell and can take a huge amount of ware before they leak or need to be changed (While not recommended I had one last 7 days).
Their relatively clean and easy to use and actually help you maintain a lot of independence aslong as you follow your surgeons advice post op.

I like to go out a lot playing sport, shopping and socialising and it didn't impact my ability to do this to any great degree. Other than I couldn't hold my liquor like I used to which isn't really a bad thing :)

For your own peace of mind I'd ask the surgeon to clarify exactly what it is they hope to achieve and what the end result is and if you are unsure or concerned get a second opinion. Also depending on where you are the hospital may have stoma care nurses, they are a great source of knowledge and comfort. Mine really helped me look after my stoma and set me on the right path. Also they were very friendly and comforting when they visited my hospital bed. So it may be an idea to talk to them before the operation.

But if your daughter is in hospital she is in the right place and can get the treatment she needs from the pros! The best thing you can do right now is just be as strong and comforting as possible and try to keep her spirits up. Take it from some one who's been on the surgical bed that's what we really want from our family and visitors.

I don't know if you really call it advice but I hope my perspective helps :) My best wishes to your daughter and your family and I wish her a speedy recovery.
 
Thank you everyone for your very positive responses - these have helped me no end. It's all very unsettlingly for us all at the moment but I feel we will all come through with support from our family and friends.

Thanks :)
 
It's understandable Crohns can be a very frustrating and nerve racking condition not just for the patient but for family, friends and loved ones of the patient too. But if you ever need to vent or talk the forums always here for you.
 
I'm 23 years old. I got a temporary illeostomy - I should have my reversal in the few weeks. - not all a permanent - back in December. It was my worst nightmare and my parents too.
However, it's put me into remission after 2 and a half years of very active Crohns which is all I really wanted. I couldn't continue living the way I was with such active Crohns and it's given me a new lease of life.

As pointyears has said, they have come on leaps and bounds. There are loads of different types of bags so if the first bag doesn't work as such, there's always another one to try. For me it was like going to a shoe shop, all the different types out there. None of my friends would know I had it, and when I have told people that don't really know me, there first response is always; 'but i'd never would have guessed/known,' so there isn't a smell or anything.

I can lead a normal, active life; unlike before. I go to the gym, go on holiday, socialise with my friends, and I can wear fashionable clothes. Admittedly I have just brought stoma control pants, which helps flatten it out so I can wear dresses and skirts without my own perceived notion that people can tell what I have underneath it. There's lot of companies online - having just checked out myself yesterday that do that sort of thing.

I can't really say much else that others haven't! I would possibly suggest googling ostomy blogs; there are quite a few out there, and I found that some of them helped me, it also shows your daughter wouldn't be alone!

I hope your daughter gets better soon, and this forum is really an awesome place!
 
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