what is the worst complication you have had/heard of with an ostomy

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Veteran Member

Date Joined Dec 2009
Total Posts : 2396
   Posted 10/11/2010 7:09 AM (GMT -6)   
Dear all,
I've read your posts often since my small child was diagnosed with UC a year and 3 months ago. We have been exploring all options and she "failed" first line ASA drugs (they failed her) so we have an extremely difficult decision to make. She's been on two courses of pred and is probably going to have to go on a third one. In the mean time, we are VERY concerned about immunomodulators in a child so small (her immune system is not even properly developed yet according to her GI). We are very seriously considering surgery. In a small child the chances that it might be CD are higher than in an older child and regardless we would want to spare her many traumatic surgeries so would want to go for a temporary ileostomy and have her chose whether she wanted it reversed or not when she is older. We pray that this would allow her to get on with being an active child (which she was before this cursed disease came into our life). But, of course surgery is such a major step and we would be going against the advice of a few GIs to try further medical treatments.
My husband and I are trying to have the GIs refer us to a few surgeons for consults but in the mean time we are trying to find out what the worse case complications with an ostomy are and what life would most likely be like for her with one (as this is pretty elective at this stage, it puts a LOT of pressure on us).
I would really appreciate it if you could share the worst complications you have experienced or even know of. I know of the possibility of things moving through too fast is one and the resulting dehydration and possible malnutrition. Has anyone had this problem, and if so, how was/is it treated?
Also, blockages, adhesions, skin problems - anything else?
I've posted before about waking up at night to empty and it seemed many did this, but do you have to stop eating at an early hour to prevent a blow out? (We are Indian and Italian and eat pretty late).
Also, how many of you have dietary restrictions?
Thanks so much for your help.

Post Edited (killcolitis) : 10/11/2010 10:38:51 AM (GMT-6)

Veteran Member

Date Joined Feb 2006
Total Posts : 5698
   Posted 10/11/2010 8:36 AM (GMT -6)   
I can't help you with your ostomy questions, I had mine for only 8 weeks, but I do want to commend you for taking this next step. Having followed your daughter's story for the past couple of years I feel you are making the best decision for her long term health and quality of life as a child. Children bounce back from this surgery very well and soon she will be a normal, healthy young person.


Veteran Member

Date Joined Feb 2003
Total Posts : 1251
   Posted 10/11/2010 9:35 AM (GMT -6)   
As Sue said, kids tend to bounce back from this (and other) surgeries easier and quicker than adults do. I had my surgery at 10 years of age and was in the family pool swimming a month later.

You will find some people prefer to stop eating around 6pm and others (like me) who just eat whenever we're hungry (which can often happen late at night for me). I sleep from approx 10.30pm through to about 7am without having to get up usually to empty my bag (it's normally to pee nowadays lol).

I have no dietary restrictions (and it shows!) and eat anything and everything, even the supposed 'no no' foods that some people will warn you about. Everyone is different as to what they can tolerate and what one person can't eat, others can eat without a problem. It's really a matter of trial and error. There are no universal rules that include everyone. However, you will find most ostomates can eat whatever they want after they've healed.

Children adapt a lot quicker than adults. I've never had a problem with dehydration although I don't drink anywhere near what people recommend ileostomates drink. Having said that, a temporary ileostomy is usually higher up in the small intestine and thus less fluid is absorbed overall than with a permanent ileostomy so it may be a little different for your child.

Good luck.
Ileostomy for 34 years due to UC. I had my surgery at 10 years of age.

Moderator of the Ostomy and Psoriasis Forums


I'm not a complete idiot - some parts of me are missing!

Veteran Member

Date Joined Dec 2009
Total Posts : 2396
   Posted 10/13/2010 11:55 AM (GMT -6)   
Thanks both for responding.
Suebear, the docs were surprising receptive to surgery as an option. One felt we really should give her the "opportunity" to go into a solid remission with azathioprine (which we are terrified of), an another said basically she's not seen pancolitis in a small child go into solid remission - we can try if we want but it's not likely with meds so surgery now or not so far in the future. We've just moved to Italy and have a consult with an adult colo rectal surgeon next week - her GI prefers this to a general pediatric surgeon? It's confusing, I guess I will post on jpouch.org about this.
Shaz, I pray we have the same outcome as you have had. How did you deal with it psychologically? I don't know how to begin explaining this to my daughter ?

Veteran Member

Date Joined Aug 2006
Total Posts : 6571
   Posted 10/13/2010 10:49 PM (GMT -6)   
at such a young age, she wont remember anything different,my son thinks mine is cool, although he did ask me the other day if thats where he came out of, lol.
But as for complications, skin breakdown is somethign that can happen, that is fixed by getting the right system, blockages can happen, those can be fixed by drinking alot and sometimes surgery, but not that often. There are other things, of course, like any surgery, but its far less dangerous than years and years of drugs, in my opinion.
Dehydration is a problem, you just have to keep up with fluid intake, drink lots and lots of water!
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!

Veteran Member

Date Joined Aug 2006
Total Posts : 6571
   Posted 10/13/2010 10:51 PM (GMT -6)   
oh and i eat whenever i am hungry and it doesnt seem to affect much, i always get up to pee so i just empty then, sometimes its full sometimes not.
I'm not sure with a small child seeing as how they are are smaller and have smaller stomachs if that would make a difference
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!

New Member

Date Joined Sep 2007
Total Posts : 17
   Posted 10/18/2010 4:36 PM (GMT -6)   
killcolitis, I've been on azathioprine since 1996 and it did get me eight years of remission before I flared again and after becoming steroid dependent, a permanent illeostomy was considered my best course of action. In my case, the inflammation had gone but the scarring was what was causing me all the lingering trouble.
I don't envy you having to make this decision for your daughter but I will say that there are worse things in life than an illeostomy, having experienced some of them, and that how you approach this will help your daughter deal psychologically. I'm in my thirties but I had to tell my nearest and dearest that I needed them to be okay with this, I needed them to not make a huge deal out of it so that I could try and be calm about it. My mother is a lovely woman but she has inherited her own mother's dramatic gene and I needed her to just tone it down a little. ;-)

As regards complications, skin problems can often be caused by not having the right kind of appliance. It can take a while to find the right one and it's trial and error at the start. But that's where the stoma nurse comes in - they are a fantastic resource for practical information and they know what will help. Don't be afraid to use them.
I eat a more varied diet now than I did when I had my colon. I enjoy food more now because it's not the enemy anymore. In the past three years, I have camped, gone on long car journeys and walks and my quality of life has improved drastically. Don't underestimate just how good it can be psychologically to have the part of your body that was keeping you ill removed. Sometimes I eat late and have to get up to empty the bag. It depends on what I eat and in what quantities. I wake up automatically and the whole thing takes less than two minutes. Much quicker than when I had crohns and would spend all night in the bathroom. It becomes second nature.

If you're worried about explaining it to your daughter, you could say that it's just a different way of going to the bathroom and that it is normal for her and the rest of us with an ostomy to do it this way. Children are a lot more adaptable than people give them credit for and I know it's all right for me to say that but she's your daughter and you are naturally trying to save her from any hurt or bother. And this surgery is a big deal but it can be a stepping stone to much better things when you're dealing with these diseases.

Whatever you decide, the very best of luck to your daughter and I hope remission finds her sooner rather than later.

Veteran Member

Date Joined Oct 2009
Total Posts : 1054
   Posted 10/18/2010 5:04 PM (GMT -6)   
I don't know how old your daughter is, but I think you're on the right track.

I have had my ostomy just 7 months (today!) and I don't ever regret it. Yes, you have to be careful about dehydration...but with constant diarrhea, that's obviously a worry even with a colon! After a few months you can eat almost anything.

My biggest complication is RARE and not really something you should even think about. about 2 months after my colon removal my intestines twisted up like a balloon animal and I had emergency surgery to correct my blockage and revise my stoma. It was awful. But supposedly extremely rare. Even when that happened, I still never regretted my surgery.

I hope you can get your little girl feeling better soon!
Stephanie, 28 years old
Diagnosed with Crohn's Colitis March 2000
Possible diagnosis of IBS-D
Total Proctocolectomy and Permanent Ileostomy 3/18/10! :)
Blockage/Ileo revision 6/8/10 :/
Tried: Asacol, Remicade, 6mp, Humira, Xifaxan, Apriso, Imuran, Rowasa Enemas, Colocort Enemas, Psyllium Seed Powder... Tried Probiotics: Align (with no change except bloating) and VSL #3 DS (AWFUL diarrhea).
Currently taking: Prenatal Vitamin, Vitamin B 12 Complex, Biotin, Vitamin D, Calcium, Flomax (for urinary retention). 

Equestrian Mom
Veteran Member

Date Joined Mar 2008
Total Posts : 3115
   Posted 10/18/2010 5:53 PM (GMT -6)   
I bet your doc could introduce you to a young patient and their parents to get a visual on how the child has adapted and the parents could probably help to ease your mind, too! Most of the time doc's think at a level way above the "seeing is believing" that patients and parents need! Just ask or even call your local UOAA chapter for help.

The worst complication I had were abscesses...they were all easily drained and cared for but they were a bit of a set back...but I'm old (LOL) and had horrible fistulas and the abscesses were recurring throughout my struggles.
Crohn’s dx 1989
some terrible years before my
temporary ileo in 2001
Proctocolectomy w/end ileo in 2008
...wish I knew then what I know NOW!
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