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06-13-2012, 04:15 PM   #1
Daisy.Justin
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Location: Bristol, United Kingdom
Colectomy - Intensive care

Hi,
My brother Justin has had Crohns since he was 19 and he is now 31.He went in for a colostomy 2 years ago and as the site was poorly positioned have had to have more surgery.

Justin went in for a Colectomy 3 weeks ago and due to a fistular (I think) there were complications and since he has been in Intensive Care for 2 weeks with severe sepsis. He has multiple organ failure and is on a respirator,dialysis machine and his abdomen has been left open following the operation.

I am struggling to get my head around what is happening and what all the doctors are saying.Statistics keep being banded around and I have gleamed from the Internet that the survival rate is not good.

If anyone can help with this that would be great and to from people with Crohns who have been through a similar story.

Thanks a loving worried sister.Daisy
06-13-2012, 06:25 PM   #2
GutlessWonder86
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Join Date: Jul 2010
Daisy,

my heart goes out to you and your brother. A fistula is an abnormal channel from the bowel to the abdomen, ureters, vagina, or rectum I believe. I've had a few fistulas myself.

If you check out ccfa.org, you can find the necessary information you are looking for. there is also a Q&A site where you can ask doctors your concerns.

hang in there. my prayers are with you and your family. ~GW
06-13-2012, 06:53 PM   #3
Becca1991
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Location: Christchurch, New Zealand
So sorry to hear about your brother, i hope things start to turn around for the better.

My mums friend who live in America had a colostomy August 2011 due to her sigmoid colon perforating the surgery went good however a week after she ended up back in hospital as it perforated again and again and again she had 6-7 surgeries in a month and was in ICU for that time on a respirator, sedated, she to had severe sepsis. She ended up passing away In September 2011.
She didn't have Crohn's Disease tho.
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06-13-2012, 07:07 PM   #4
PsychoJane
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Hi Daisy,

I'm so sorry to read that your brother and yourself are going through such a difficult time. I'm afraid all I can do is offer you moral support.
You two will be in my thoughts.
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06-15-2012, 11:02 PM   #5
D2therock
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Join Date: Jun 2012
Location: L.A. Southbay, California
Hey Daisy,

Its a couple days later so hopefully this finds you and your brother in an improved position.

Mostly just wanted to wish the two of you well, and say we're thinking about you.

In addition, just wanted to remind you that often what you find on the internet is either not accurate, or posted by those who have had negative experiences. (Those of us who have had good experiences tend to go off and live our lives again. This is my first post of this kind in almost 5 years probably)

So do take heart.

I had U.C. which is fairly different. But I had several complications after the original surgeries. And they also had to leave my abdomen open when it didn't heal properly.

But it did work out. So I pray it will for your brother as well.

(Please be sure you are going to the best doctor's and hospitals you possibly can... that's all I can suggest. I lucked into that after going to some middle of the road hospitals early on. And the difference was night and day.)

All the best
06-16-2012, 12:21 PM   #6
Absentminded
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I don't have any advice but just wanted to add my best wishes to you and your brother.
I hope things start getting better soon.

I noticed that you're in Bristol, is your brother at the BRI? I'm looked after by them, and the IBD team there are fantastic, plus as a teaching and research hospital they have a larger budget than some hospitals.
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Diagnosed: July 2009

Resection and removal of Enterocutaneous Fistula: Jan 2014
Pelvic infection Drainage: April 2013
Ileostomy reversal: February 2013
Ileocecal resection and temp. ileostomy (Say hello to Norman!): Nov 2012
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Past medications: Humira, Infliximab, Azapthioprine, Asacol, Budesonide, Prednisolone, Flagyl, Cipro, Cholestyramine (Questran), Fortisips.
06-17-2012, 02:08 AM   #7
FruitLoop
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Hi - i had sepsis following a re-section that split and i was in IC with my abdomen left open.

I pulled through even though my family were told i had 24 hours to live.

My thoughts are with him.
06-17-2012, 02:54 AM   #8
Daisy.Justin
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Location: Bristol, United Kingdom
He is in Frenchay hospital which I am told has a very good ICU team.My mum has laminated some pictures and put them up around his room.He has been taken off the sedation now but is not yet awake.It is going to be very difficult to explain to him what has happened.

Thank you for your comments it is so amazing to her your stories and to know you have been through this.He will have been in here for a month on Wednesday,he thought he would be in there for 5 days xxx
06-17-2012, 12:32 PM   #9
Daisy.Justin
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Join Date: Jun 2012
Location: Bristol, United Kingdom
Justin has been taken off the sedation now and has been off of it for about 2ish days.The nurses have told us that if he doesn't wake up today/tonight then they have to give him a brain scan.Is this normal?xxx
06-17-2012, 02:16 PM   #10
Artificial
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Location: portsmouth, United Kingdom
Hi Daisy,

I don't have any info regarding the brain scan (hopefully someone else can jump in) but I just wanted to wish your brother well xx
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