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Crohn's Disease Forum » Surgery » Stoma Subforum » Ileostomy choice - need help


08-14-2013, 06:22 AM   #1
FruitLoop
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Ileostomy choice - need help

Hi all - I need some advice on an ileostomy.

Quick history:

2009 I had a resection which split leading to peritonitis and an emergency ileostomy. I then developed 2 fistulas.

2010 - stoma reversed and fistulas removed. Became anaemic and then got a capsule camera stuck between 2 strictures.

2012- November went for resection - 2 days later it split, peritonitis, emergency ileostomy, icu.

Feb 2013 - stoma reversal due to massive output - 2 days later join split and emergency op to create a fistula with the idea being that this would heal.
Mar 2013 - abscess which when drained became a fistula. From them till now I have 8 fistula holes.

Saw surgeon yesterday who said he can remove the fistulas but I have got to have a stoma as a rejoin is too dangerous.

So I have two options - loop ileostomy which could be reversed in 1-2 years OR an end ileostomy which is essentially permanent but could be reversed but its a very big op to do so.

So?......... Which ileostomy is best? Has anyone had an end ileostomy reversed?

How do I make the decision? The surgeon basically wouldn't be pinned down on which to have although he said the end ileostomy would have less potential for complications such as fistulas, abscesses etc.

I'm waiting to go onto Thalidominde which should sort the Crohns which would hopefully mean that further reversal surgery would have a better outcome due to Crohns being dormant so no inflammation and better chance of healing.

The surgery is going to be September probably 3rd week.

I'm in a total state trying to decide.
08-14-2013, 08:27 AM   #2
annawato
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Wow you have certainly been through some very tough times and I can certainly understand your indecision. My last stoma was a loop stoma which was reversed after a year. But i had to be opened up down the middle to do it.
This stoma is abcarian which is an end stoma with the distal lumen brought out flush with skin beside proximal stoma (last part copy and pasted as you can probably guess from terminology). This stoma was initially meant to be temporary but now is most likely permanent.
Just to confuse things further it may be worth asking your surgeon about them.(abcarian) I'm not sure why I was given one this way but I assume it is easier to rejoin at a later date since the lower half is just there. It may have the benefits of an end stoma for you though. I don't know enough to advise I'm sorry.
It may be worth asking your surgeon why an end stoma has less complications and why is the reversal surgery so much more involved?
Also I guess you need to take in to account all the complications you have each time you have a resection or reversal. Maybe a permanent stoma would be the best thing.
As to the massive output you had wiht the last stoma I have battled with this too. It does improve in time as the small bowel adapts. I'm sure you tried all the usual remedies at the time but if you need further info on that just ask away.
Sorry I can't be more help with your decision. Writing this I have wavered between suggesting you go for loop and later reversal and then thinking no permanent would be better so I can just imagine how difficult it must be for you.
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Anna

you name it, i've tried and failed it! currently on- waiting to see whats new and reducing pred
temp. ileostomy reversed feb 2011, new ileostomy, nov 2012
4 resections plus removal of adhesions etc, recurrent intestinal abscesses
lyme disease, depression, sacroileitis, chronic pain and......Crohn's..........
08-15-2013, 01:09 AM   #3
sanni
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I have had an end stoma reversed in 2007. I had it for 5 months and the reversal went fine. Maybe took a while for all places to start workin again, but then that was normal it seems.

I later had a second ostomy that now is my permanent one. In the operation to then remove the extra of my intestines = large intestine it was noted that after 2 years of no usage it had gotten quite inflamed and joining the two intestines would probably have had been very difficult. There was its own term for the type of inflamation it had in it but basically reason to it was zero use. But then I didnt not care much at that point since had desided to keep my ileostomy no matter what.

But just to say they can be reversed but I suppose dont wait years and years to do so.
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Crohn's diagnosed in -93 (age 12)
I have had several operations with the result in short gut syndrome.
Ileostomy (2008).
Meds: Humira and tons of nutrition supliments including B12 and D injections.
Hypokalemia (hypopotassemia) and hypomagnesemia.
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