Ileostomy temporary but is now looking to be permanent.

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ash2288
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Date Joined Jul 2011
Total Posts : 8
   Posted 7/5/2011 9:00 AM (GMT -6)   
Hello my name is Ashleigh i am 22 years old. I was born with gastro schizos during my childhood i was ok but as i reached my late teens i started to suffer from it again. In October 2010 i had an operation to have a ileostomy. When i last saw my surgeon she had said that if i have a reversal i am more prone to the risks. I have an appointment to see her next week and was wondering whether i should have the operation to make it permanent. But i am not sure whether it is right to do so yet and what the operation is and the effects of post operation.

Is there anyone who can give me some advice please.

Ashleigh
x

4GRACE2U
New Member


Date Joined Jul 2011
Total Posts : 9
   Posted 7/5/2011 6:22 PM (GMT -6)   
Dear Ashleigh,

I have a permanent ileostomy. I had my surgery back on July 1st, 2010.

Are there any specific questions I can answer? My daughter, Sangita, is a family doctor, MD. She has studied about Gastroschisis.

I looked up the Wikipedia article on Gastroschisis which is located online at: en.wikipedia.org/wiki/Gastroschisis . You might want to check out the article (if you haven't already) because there are some excellent links listed at the end of the bottom of the article including some Gastroschisis support groups. You may be able to find some good advice there regarding the risks posed by an ileostomy reversal.

Best wishe always,

Judy

PS: You can also contact me by email: forgrace2u@gmail.com

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 7/5/2011 8:17 PM (GMT -6)   
i have a perm ileo, from having UC. I don't know anything about the disease you had, so im not sure of how a jpouch vs ileo is.

But my ileo hasn't stopped me from doing anything, and i actually chose it because i didnt want to mess with the extra surgeries.
good luck!
UC for 8 years, before finally kicking its butt and having a permanent ileostomy April 17 2007!
-I have gone to find myself, if i get back before i return, keep me here-
No matter what kind of day you are having, take five minutes to sing loudly and dance like a fool!

ash2288
New Member


Date Joined Jul 2011
Total Posts : 8
   Posted 7/6/2011 4:14 AM (GMT -6)   
Hi Judy, I had gastroschisis when I was a baby i reacted to the reversal very badly and they ended up having to remove half my large bowel. When I had the op to have a ileostomy in October 2010 I did not react to well to the operation and they had found that things where not really where they were supposed to be in my tummy. The rest of my large bowel is dilated and they saw that my small bowel was dilated and abit damaged but they didnt want to remove anything from the small bowel as they have not got much to play with really.

when I last saw my surgeon she advised me that if i can deal with the stoma then i should keep it as i am prone to the risks if i have a reversal. The only trouble i have really is leakage and the time it takes for the food to go from the mouth to the stoma as it can take anything up to 8 hours.

To be quite honest if the doctor is saying it is best to keep it then i just want to get all the ops (permanent) out the way so i can get on with my life and get my health back in track.

i just want to know whats the best thing to do and what does the permanent op in-tale.

Thank u summerstorm just want to way up all the options.

Ashleigh

ash2288
New Member


Date Joined Jul 2011
Total Posts : 8
   Posted 7/6/2011 10:30 AM (GMT -6)   
what do they do with the permanent operation and what is the recovery time?

Ashleigh

blueglass
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Date Joined Dec 2010
Total Posts : 3332
   Posted 7/6/2011 2:40 PM (GMT -6)   
For the permanent ileo they create and end stoma, which means they put the end of your small intestine out of a hole in your belly. Then they turn the end inside out, like a turtle neck sweater, and sew it to your belly. The stitches dissolve or fall out in a month or so.

From what i understand, and end stoma is usually easier to manage than a loop (temporary) stoma, because it sticks out further, so the waste goes in the bag better.

Recovery time depends on a lot of factors. You're young, so that definitely helps. Some folks seems to be back at work in 4-6 weeks, for some it takes longer. There are some complications that can happen.

Welcome to the list! Feel free to ask more questions, it's a great resource.
48 years old, female.
2004 dx indeterminate colitis. Back and forth between Crohn's and UC dx. Many drugs, minimal success.
2010-11 Crazy skin and eye complications, high fevers, bad flaring. Out of good drug options, tired of scary drugs.
Feb 2011 -- proctocolectomy with permanent ileolostomy; abscess, blood clot. Still healing, still glad for the surgery

Ymotso
New Member


Date Joined Jul 2011
Total Posts : 17
   Posted 7/6/2011 2:47 PM (GMT -6)   
Hi Ashleigh. I had a permanent Ileostomy in July 2009. In February 2010 I had a lapascopic abdominoperineal resection to finalize everything. That is basically removing the rectum to prevent possible cancer in the future. I had everything done at Mt Sinai Hospital in Toronto and everything is great again. Except for dealing with the appliance and that isn't so much, everything is back to normal. Recovery is about a month of some discomfort and careful sitting.

ash2288
New Member


Date Joined Jul 2011
Total Posts : 8
   Posted 7/7/2011 5:09 AM (GMT -6)   
i have a stoma already but still got my large bowel dittached in the tummy was mean to be temporary but because of the complications on the last operation they are advising me to keep it so should i now just have the permanent op just to get it over and done with or should i still wait.

I cope quite well with the stoma just the odd leakage that knocks my confidence but that has started to calm down.

can anything happen if they just leave the detached bowel sitting in there?

Ashleigh

villager
Regular Member


Date Joined Aug 2010
Total Posts : 130
   Posted 7/7/2011 4:22 PM (GMT -6)   
hi Ash, i understand your worry when you have a decision to make & not being a medical expert you dont really know all the options & their implications - i guess the only thing to do is indeed to ask the questions of those here & your doctors & make the best decision you can

for what its worth here my tale of decicions - the 1st was to avoid all mention of surgery & suffer 20 yrs of UC because the thought of an ostomy was too dreadful to contemplate - 2nd decision was when colon cancer was a certaintly & my choice was a perm end-ileo, a j pouch & another option which i now forget - ??? what did i know about the pros & cons & implications . anyway between the surgeons persuasion & my wanting it all to be over in one go, i chose a perm end-ileo, removal of colon & rectum & closue of anus

it may not help your decision in any real sense but as many have said here, after the healing is over, there can be a great quality of life with a per end-ileo - if fact if i had to do it all over again i would have no hesitation in saying yes to it all again

you mentioned an 8 hour time for food to go thru your system, i find that it depends on what i've eaten & sometimes the transit time is short 1 hour & sometimes it does take much longer even up to 8/10 hours - i'm happy enough for it to take its own sweet time so long as it is moving without blockage & without any discomfort

just to mention also that if you do eventually go for having the anus sewn closed, this does take longer to heal than the other wounds - for me it was about 2 months to complete but for other it takes longer

cheers & best wishes
UC since 1990, not a lot of fun
Qualified as ileostomate May 2010, a much happier boy now
panproctocolectomy, abdomino perineal resection, perm ileostomy
my colon may not be, but my heart is in the right place !!

4GRACE2U
New Member


Date Joined Jul 2011
Total Posts : 9
   Posted 7/7/2011 11:52 PM (GMT -6)   
Dear Ashleigh,

When you say that you are having leakage, do you mean that your appliance leaks discharge onto the skin surrounding your stoma or even worse, further onto your abdominal skin.

I had a leakage problem for nine long months until I was able to locate an ostomy appliance which prevented leakage for usually 2 or 3 days at a time.

I have learned, as soon as I start to feel itching around my stoma area, I know now that discharge is leaking through my Eakin Cohesive Seal. Within a short time, discharge will begin to leak outside of my appliance, onto my abdominal skin and will very shortly begin to burn my skin. If I wait for several hours before changing my bag, which is sheer torture, my leakage will soon create a huge opening between my abdomen and my ostomy wafer seal and ultimately a tremendous amount of leakage onto my skin or bed sheets, if I'm sleeping. I use a waterproof, washable cotton pad on my mattress every night to keep the discharge from staining my sheets.

By the way, the best stain removal product, which works to remove discharge from clothes and sheets is "SHOUT GEL ADVANCED". If I don't use this on my discharge stains, they become permanent stains.

Take care,

Judy cool

ash2288
New Member


Date Joined Jul 2011
Total Posts : 8
   Posted 7/8/2011 5:33 AM (GMT -6)   
thank u all ur advice has been very helpfull.

with the leakage i dnt get much discharge its leaking from the bag when i am asleep, my tummy tends to go more at night whether i eat early or not. i used to stay up till midnight all the time but i just cant do it anymore and i get very broken sleep which always makes me feel rough but it is starting to calm down abit.

Ashleigh
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