Ileostomy

Are you considering surgery ? Have you had surgery ? Trying to cope with colostomy ? Share your experience with others here.
Karencraig
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Posts: 1596
Joined: Fri Apr 15, 2011 9:51 am
What is your status: Colitis Sufferer
Date first diagnosed with IBD: 08 Jan 2010
Location: Rochdale Lancs

Re: Ileostomy

Post by Karencraig » Thu Oct 13, 2016 7:30 pm

You've sussed us!!

As long as you make a decision which is right for you. You might find this clip interesting. https://www.convatec.co.uk/stoma-care/r ... awareness/

Keep us updated. Hope you've got a long list of questions for the stoma nurses. Ask their opinion of your surgeon. They see the results first hand. Our nurses have a practice kit - so you can see what it feels like to wear a bag. You might also want to ask for some samples of the base plates (can get 2 pieces with the sticky bit separate) and just see how your skin reacts. That's one of the main issues for people with stomas.


EX UC sufferer,surgery on 1 March 2012!!! Marvin (Stoma) became my life enhancer.

rogalin47
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Posts: 1016
Joined: Mon Aug 09, 2010 4:28 pm
What is your status: Colitis Sufferer
Date first diagnosed with IBD: 01 Jul 1992
Location: Gloucestershire

Re: Ileostomy

Post by rogalin47 » Thu Oct 13, 2016 8:41 pm

Ha ha I'm happy to be bossy anytime :lol:

It's Good you've made a decision and even better that you do seem to be very positive about it. Definitely have a look at the video clip that Karen suggests, it's brilliant and everyone should see it. I actually think it would make the perfect prime time TV advert as it would show all and sundry that us baggies are no different from how we were pre op, and no different from them. we just have to wear an additional item on our bodies that they don't......ok and we poop slightly differently too!! (Personally I now feel sorry for anyone who poops normally and has to use their bum!!!!)

I was given a practice kit to try out at home before my op, this consisted of a bright red stick on foam stoma, an ileostomy bag and some gel to put inside to replicate output. This caused enormous hilarity amongst my family especially where my daughter was concerned as she thought the fake stoma looked like the big red buzzer on Britain's got Talent.....My stoma nurse fell about laughing too when I told her and now tells that very tale to all her new patients!!! Laughter certainly helped me accept Norman my stoma and now Norman is just another member of our very dysfunctional family!

Do let us know how your appointments go and remember we will be with you every step off the way


21 years of evil UC over on 6th April 2013, welcome to Norman the stoma whose given me my life back!!

Sp1unique
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Posts: 4
Joined: Thu Oct 06, 2016 4:32 pm
What is your status: Colitis Sufferer
Date first diagnosed with IBD: 01 Jan 2012
Location: London

Re: Ileostomy

Post by Sp1unique » Sun Dec 11, 2016 12:00 pm

So I had an ileostomy 5 weeks ago to remove large intestine, rectum/anus still intact. I'm finding that I'm still bleeding from the back, now I know this is not uncommon but I just wanted to know if this is left and not removed are there any complications. I know a lot of people leave it attached and have it removed later on but what happens to the rectum/anus or even the rest of the body where it's been attached if it continues to bleed?
I'm not seeing my surgeon until late January but just wanted to know if anyone had any thoughts!
Thanks.



Karencraig
Power poster
Posts: 1596
Joined: Fri Apr 15, 2011 9:51 am
What is your status: Colitis Sufferer
Date first diagnosed with IBD: 08 Jan 2010
Location: Rochdale Lancs

Re: Ileostomy

Post by Karencraig » Mon Dec 12, 2016 9:25 am

Apart from the bleeding, how are you doing?

Leaving the stump behind, I still have mine, as my surgeon doesnt remove at the first surgery. Possible issues. Continuation of colitis symptoms, having to treat topically, over years a risk of cancer, as the stump isnt used

I had a sigmoidoscopy last year and was shocked to be told after 4 years the stump was still moderately inflammed, so dont think I'll be going for a reconstruction! I dont have any major symptoms so leaving alone.

Bleeding after 5 weeks, no experience, but guessing with a big wound which has pressure on it just from sitting down, bleeding may be normal, unless its a lot of bleeding.

Best rule of thumb, if not sure ring and ask. Does your surgeon have a colorectal nurse, or do you have a stoma nurse?

You may also want to ask on the ileostomy association forum too. http://www.iasupport.org/forum-terms/forum-welcome


EX UC sufferer,surgery on 1 March 2012!!! Marvin (Stoma) became my life enhancer.

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