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Nothing left was looking for any advice for stoma

I've had Crohn's for 13 yeah I'm no(w) 26 and been to the clinic today and have been told I have a huge fistula and my bowel is twisting, so my 8th surgery is booked for the 17 November.

I have to have the fistula removed and they need to untwist my bowel, I also have to have the bag on which they hope could be reversed.

3 weeks prior to surgery I have to have the surgical procedure to have a peg fitting in my neck to have TPN. I start Methotrexate injection and if I haven't put any weight on in 2 weeks as its low and dropped again today.

So anyone who could help with advice and information on how they find living with the bag, how they first coped any general advice would be really appreciated.

I've had everything over the years allergic to seriods and cannot have trail drugs xxxx
 
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DJW

Forum Monitor
Hi Emma and welcome.

I'm sorry the meds haven't worked for you. It's a tough place to be...especially when you're young.

I've had my ileostomy for 30 years now. It was a life saver for my. None of the meds worked for me at the time. It eventually put me on the right track for a 20 year remission. I live an active life.

You must give yourself time to adjust both physically and mentally. I'm not talking about weeks. It take months to maybe a year. Be kind to yourself.

The good thing I see is the number of people who are given a new lease on life.

Sending you my support.
 
Hi Emma and :welcome:

I have had a stoma and bag for 15 years and it has made an extremely positive change to my life. I am no longer in constant pain nor have to live in fear of uncontrolled bowel movements. Before the operation, I was very ill but put the op off for far too long, so it took quite a while for the wound to heal completely.

You might take a little while to get the stoma equipment right - your stoma will change in size and shape as it heals and some types and brands suit some people more than others. You should, however, have a stoma nurse who can help and the ostomy equipment suppliers are very helpful.

I can now do all sorts of things that I wouldn't even have thought about before my stoma. Earlier this year I off to Peru for a holiday, then 4 days fishing off the Western Australian coast.

Best wishes.
 
Emma,
I have recently elected to have a permanent ileostomy and as you may expect it just became to unbearable to continue the life I was living. Your surgery sounds like a temporary ostomy and a friend of mine who had a reversible stoma situation said as he was just becoming used to it he was having it reversed.
It definitely is different and sometimes feels overwhelming but that is to be expected. The most important thing to understand in your case is that it will be reversed and truth be told a good preview if god forbid you ever need to make the difficult decision later on down the road.
For me after all the meds., a resection 10 years ago(most of my large a foot of small removed) no bag, multiple long term fistulas, etc. etc. I had enough as well. I have to say I am a trooper and have been through the ringer, but for me this was a choice to have a life again. I think you will hear this from many ostomates.
The products available for ostomies was mind boggling and a bit of a hurdle. But there are many people who have great videos on youtube which may help you get through it. They were very important for me and helped me with all of my questions. I wish you the best and hope you find a way through.
 
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