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3 week post op with end ileostomy

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Posted 1/28/2013 4:33 PM (GMT 0)
Hi everyone,

I had a end ileostomy performed 3 weeks ago due to having crohns and 4 entercantaneous fistula's thankfully no crohns or fistula anymore ,but still trying to get my head around having an ileo. I know its still early days but i seem to be getting paranoid about emptying it, fear of it leaking which it hasn't, but worries me when i go out does more confidence come with time i was fine when in hospital because half the paitents there had stoma's but now im home i feel a bit on my own with it all. any advise would be gratefully apprieciated thanks so much Bev x  wink

Posted 1/29/2013 5:23 AM (GMT 0)
I think that I have been very lucky as far as leakage is concerned. It was a lot of trial and error but I was able to figure it out before I went back to work. I still have some close calls but I just carry an extra set of clothes in the car and my little bag. I wish you the best!
Posted 1/29/2013 7:51 AM (GMT 0)
Hi there. I'm fairy new to my illiostomy and at first it can be a very uncomfortable thing. A few tricks I felt helped with my bag leaking and peace of mind for a restful sleep. I change my pouch at night to a larger one. Even if I have not eaten close to bedtime it still fills with air in the night. I always empty it before bedtime and if you sleep on your side I like to prop my pouch on a pillow so it doesn't hang. Make sure you empty it often during the day so dont cause more strain than necessary on the adhesive as well. Hopefully this helps.

Lindsay
Posted 1/29/2013 7:44 PM (GMT 0)
Bev- I have had an ileostomy due to Crohns and have had it for 2 years. It is a huge change and it takes some getting used to.
You can do just about anything that you were doing before you had it. I have ridden my motorcycle, gone swimming, played sports and I eventually want to go skydiving. So don't let it hold you back from anything. You may have to adjust certain things like what type of bathing suit you wear so the bag doesn't show, but no big deal.
Another thing I have adjusted is if I am planning on going out somewhere I won't drink carbonated beverages or eat food that causes gas.
I also wear sure-seals that go around my wafer and if I end up having a leak, it will hold it in and buy me some time. I have never had one knock-on-wood but just in case. I also keep a backpack in my car with a change of supplies, but never had to use them.
I think the best thing you can do is to keep a positive attitude. At least you don't have to sprint to the bathroom anymore right? Now you can just wait until it fills up and casually stroll to the bathroom and it only takes less than a minute to empty and nobody will know.
It may take some time to gain the confidence but it will come.
Let me know if you have any other questions. You can post here or email me.
Posted 1/29/2013 8:47 PM (GMT 0)
Bev.. start slowly. just get out and do something..maybe just a little walk down the road at first. Or a ride in the car with someone driving you. I distinctly recall my very first "outing" post my very first ileostomy... my hubby took me for a ride in the car, we stopped and got ice cream and then we drove to a park, sat on a bench, ate it , and went straight home. Sounds pretty dull. But I will tell you.. just doing little things like that... successfully.. no leakage, no problems... gave me the courage to get out more and more. Eventually you will see you can do anything.
good luck bev. let us know if you have more questions.
Posted 1/30/2013 1:48 AM (GMT 0)
Think of the positives...your fistulas are gone, YAY!!

Like everyone has mentioned, take baby steps, but get out and enjoy yourself. I started with picking up my mail every day. Try to do at least one thing 'new' to you since surgery every day...you'd be amazed at the joy in simple things!

You've answered it yourself, confidence will come with time, you are still recovering and are in the early stages...don't be too hard on yourself. Don't forget we are always here for you! (((HUGS)))
Posted 1/31/2013 11:45 AM (GMT 0)
Thanks so much for replying i managed to take myself to the coffee shop up the road this morning (although avoided coffee!) stayed there for half hour then came home, but felt so much better for doing it and nothing going wrong. thanks again for your support I think I may be on here quite frequently as i don't feel so alone now I will also help others if i can Bev x
Posted 1/31/2013 2:17 PM (GMT 0)
bev... super super congrats. That was exactly what I was suggesting. Just little trips. And you did it successfully!!! So try to think of something else to do today!
great job and your are well on your way to gaining your life back!
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