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Crohn's Disease Forum » Surgery » Stoma Subforum » What can go wrong with a stoma?


01-28-2015, 11:22 AM   #1
ThatGirl
 
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What can go wrong with a stoma?

I'm about to get my first resection surgery and because I'm still on steroids and had an infusion of Remicade less than six weeks ago, the surgeon wants to avoid complications by doing the operation this week but attaching a stoma instead of joining the two healthy sections of bowel. I'd have it for about three months and then he'd go back in and rejoin the two sections.

This is my first surgery and I'm really nervous about complications. I've done a lot research about ileocolic surgery (since my stricture is at the terminal ileum) and have been able to ask my doctor some good questions but I've had less success looking up advice about stomas.

What are some common complications/problems? What do I do if it leaks? What can go wrong when it's removed?

I'm the kind of person that feels more comfortable when I'm well informed. I'd like to know what I may run it to. Hopefully everything goes okay, but I want to be prepared for the worst. Thanks!
01-28-2015, 12:00 PM   #2
DJW
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Hi and welcome.

I've had one for many years.

Leaks with the appliance happen...more so in the first few months. Usually because the stoma changes shape and size post surgery. You'll go through more appliances early on. You will have a stoma nurse to guide you along the way.

Be careful about lifting. Follow doctors orders. I limit it to 10 pounds for the first 8-10 weeks. This is to prevent a hernia.

I've never had reversal surgery so I can't help you there.

Ask lots of questions.
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01-28-2015, 12:21 PM   #3
nogutsnoglory
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Like DJW said, leaks and size changes can be a pain for weeks. Its a lot of trial and error to see what stays on, does the job. Aside from that risks include skin problems around the stoma from fungus or inflamed skin. You could also have a prolapse or situation where stoma goes inward. More prone to obstruction at the stoma site.
01-28-2015, 12:32 PM   #4
2thFairy
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Obstruction and dehydration are most common in the first few months. Your stoma nurse will be able to instruct you on dietary ways of hopefully avoiding both before you leave the hospital.
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01-29-2015, 11:53 AM   #5
UnXmas
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I've had problems with retraction and prolapses, with my first retraction requiring surgical correction. My first two stomas blocked very easily so I had to stick to a very low fibre diet, but with my third (and current) stoma, that hasn't been a problem.

Skin problems and leaks are common (leaks are possibly even inevitable), but I've had no skin issues and few leaks. When I have had leaks, it's been because of a specific problem: my stoma retracting. Once the stoma nurses saw it, they switched me to convex bags and the leaks stopped. I get the odd random one now and then, but often go weeks without a leak occurring.

My current stoma is permanent, which I am very grateful for; I don't ever want to go back to all the rectal and defecation problems I had before. This stoma repeatedly prolapses to a ridiculous length and then retracts back until it's completely disappeared, all day (and night) long, several times a day. But not the type of retraction my first stoma did; my current stoma functions fine despite it's constant changes. As long as I use a convex bag and change it fairly quickly if it's changed in such a way as to miss the bag opening, it doesn't leak.

Last edited by UnXmas; 01-29-2015 at 01:41 PM.
01-31-2015, 05:10 PM   #6
ThatGirl
 
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The surgery went pretty well. When does the stoma feel "normal"? How long does it take to get used to?
01-31-2015, 05:28 PM   #7
DJW
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Glad it went well.

As everything heals it will start to feel normal.
02-01-2015, 06:09 AM   #8
UnXmas
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The surgery went pretty well. When does the stoma feel "normal"? How long does it take to get used to?
I thought I was well prepared for my stoma, as I wanted it and it had been talked about for so long. The day after my surgery, a stoma nurse came to show me how to take the bag off, and the stoma was so big and smelt of blood and I felt faint and had to lie down. I was in hospital for about ten days (it wasn't supposed to be that long but I had complications). By the time I got home I was changing the bag myself and haven't looked back since.

But people adjust in different ways. Is there anything specific you're having trouble dealing with?
02-01-2015, 08:21 AM   #9
2thFairy
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I wanted my stoma, but once it was actually there it kind of freaked me out. Oddly enough, when it finally woke up and started moving around and squeaking, that's when it felt real and very cool. I'm still fascinated watching it!
02-01-2015, 08:42 AM   #10
Grotbags
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Your stoma will get smaller as the weeks pass, mine looked like a big peeled tomato at first, it was about 50mm in size , now it's down to 30.
I got a bit of a fright when mine first started to move about, but that's perfectly normal.
I'd suggest getting a stoma guard for when your in a car , if your in the UK, you can get one free on the NHS, just ask your stoma nurse.
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02-01-2015, 11:01 PM   #11
2thFairy
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I use a rolled up towel tucked under the seatbelt right next to my stoma to keep the belt off of it.
02-25-2015, 03:40 AM   #12
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I have a colostomy so the seatbelt doesn't go over the stoma when I'm driving, only when I'm a passenger. (Reverse will be true in countries that drive on the left, natch!)
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2012: Colonoscopy passed 2 diverticulae at sigmoid, lesions at ileum. Crohn's confirmed. 125mg Azathioprine; Pentasa later dropped
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2014: Full sigmoid blockage April on. Megacolon; starvation. Aug., emergency sigmoidectomy; colostomy
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02-25-2015, 04:30 AM   #13
Grotbags
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I have a colostomy so the seatbelt doesn't go over the stoma when I'm driving, only when I'm a passenger. (Reverse will be true in countries that drive on the left, natch!)
That's weird, I was just thinking that yesterday when I was driving, that it would depend what side you drove on as to where the seatbelt sat on your stoma.
Mines an ileostomy , so on the right, I'm in the UK so we drive on the left, which is of course, the correct side , so mines only affected if I'm a passenger too.
02-25-2015, 04:38 AM   #14
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Um, yes, must be time for me to put my brain to sleep. You (and I) DRIVE on the left and SIT on the right to do it. The Misguided Ones need a stoma guard for driving with a colostomy but not with an ileostomy. Did I get that right yet? I get a lot of left-right confusion since acquiring a colostomy....imagine cutting-to-fit for an oval stoma while using a mirror...
02-25-2015, 07:19 AM   #15
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Sounds like a good smooth run on the whole. Ive got a terminal ileostomy aswell. My crohns was really bad before anyone noticed so i've had complications with reattachment but they said my case was extreme. My stomas great i never had any trouble with the initial one at all. You should be fine and worse comes to worst you'll have a stoma which isn't really that bad but it sounds like your reattachment will be smooth. There was allot of infection and stuff from a tear in my gut when i was operated on so i had to wait a while. Take this time to look after yourself and make sure your comfortable in your life. SAY NO TO STRESS
02-25-2015, 12:30 PM   #16
2thFairy
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That's weird, I was just thinking that yesterday when I was driving, that it would depend what side you drove on as to where the seatbelt sat on your stoma.
Mines an ileostomy , so on the right, I'm in the UK so we drive on the left, which is of course, the correct side , so mines only affected if I'm a passenger too.
The across-the-lap belt hits where my stoma sits, so it doesn't matter if I'm driving or just sitting...it's always in the way!
02-25-2015, 11:10 PM   #17
Nyx
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I've never had a problem with seatbelts, my stoma is high enough to be above the lap belt, and sits just to the right of the shoulder strap. It's in a bad place for clothing though...lol It's right on my belt line.
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02-26-2015, 04:32 AM   #18
Grotbags
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Mine is quite low, which is actually a nuisance when it comes to wearing guards , I have a curvy shape, so the belt always tends to move up to round my waist.
The Ostomy Resolutions guard has been a godsend in that respect, no belt.
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