Share Facebook
Crohn's Disease Forum » Surgery » Stoma Subforum » IIeostomy stoma bag keeps leaking :(


08-23-2013, 09:43 PM   #1
Ang71
 
Ang71's Avatar
 
Join Date: Jul 2013
Location: Gold Coast, Queensland, Australia

My Support Groups:
IIeostomy stoma bag keeps leaking :(

I've just have IIeostomy surgery and am stuck in hospital because my bag keeps leaking. Because of this the skin around the stoma is red raw and very sore! My stoma is not in a good position as I had to have emergency surgery so they didn't find a good position for it, so its around my wound and a crease from previous surgery's and this is wear it leaks! This is my first stoma ever and I hate it!! I'm soo depressed.. Has anyone else had a similar problem and how was it fixed..I have to have this for 12mths but I'm ready to go jump of the hospitals roof already.
08-23-2013, 09:50 PM   #2
DJW
Forum Monitor
 
DJW's Avatar
 
Join Date: Jul 2013
Location: Ontario

My Support Groups:
Sorry you're having problems. Is a stoma nurse working with you to find a solution? What you're going through does happen. I had surgery last summer and the stoma was moved. It took about two months before I could confidently get 5 days use. Still had 3 or 4 blow outs when I returned to work. Things are fine now. Hope thing improve for you quickly.
__________________
Crohn's Disease
DX 1978 (12 yrs old)
Ileostomy at 19

Visit Crohn's and Colitis Canada:
http://www.crohnsandcolitis.ca/site/...tis_Canada.htm

Living in Ontario with no drug benefits?

Trillium Drug Program:
http://www.health.gov.on.ca/en/publi..._trillium.aspx

Dave
08-23-2013, 10:03 PM   #3
annawato
Moderator
 
annawato's Avatar
 
Join Date: Apr 2012
Location: sydney, New South Wales, Australia

My Support Groups:
Sorry to hear about your troubles Ang. Unfortunately this sort of thing is very common in the beginning but it DOES get better.
Firstly, what sort of bag are you using? Is your stoma nicely round or odd shaped? does it stick out a lot or not very much? Are you using barrier wipes, paste, stomahesive powder or seals? Is the irritation just where the leak occurs or all around the stoma or everywhere under the baseplate? Is the skin weeping or just red and irritated?
Please don't jump off the roof just yet. We can help and things will DEFINITELY improve.
__________________
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..........
08-24-2013, 04:29 AM   #4
Marx
Senior Member
 
Join Date: Dec 2011
Location: United Kingdom
So sorry to hear that but what you wrote could of easily been me a couple weeks back. I had the exact same situation. I had leaks, was told I need for 6-12 months and was totally depressed about it. It does get easier with time. Talk to yor stoma nurse about all your concerns and with regards to the leaks and sore skin, there's this powder you can use to help protect it and also these security strips which you stick on as an extension around the sticky part of the bag which covers a larger area and helps prevents leaks. Your stoma will get smaller as weeks go on and it will get easier as your skin heals as well. Wish you all the best as I know exactly what you're going through.
__________________
Ileocecectomy - aug 2013
Right hemicolectomy - aug 2013
Sigmoid colectomy - aug 2013

With a temporary bag

Current meds - Azathioprine, omeprezole

Previous meds - budesonide, prednisolone, infliximab, omeprezole
08-24-2013, 05:55 AM   #5
Ang71
 
Ang71's Avatar
 
Join Date: Jul 2013
Location: Gold Coast, Queensland, Australia

My Support Groups:
Thanks everyone for you feedback.. I'm currently stuck in hospital, the stoma nurse won't let me home until they get this sorted.. She has used some cream, powder stuff on my skin plus a barrier spray.. The appliance I'm trying is the two part hollister. I'm putting these little pads in the bag that absorbs moister also i am on gastro-stop & Metamucil twice a day.. I don't think I have ever been so depressed in my life 😞
08-25-2013, 10:15 PM   #6
annawato
Moderator
 
annawato's Avatar
 
Join Date: Apr 2012
Location: sydney, New South Wales, Australia

My Support Groups:
Ang see if they have or can get a different brand for you. Lots of people seem to have problems with Hollister bags sticking (though other people love theirs). Maybe it depends on skin type. I don't know.
It will get better as the wound heals and you can use paste to fill in the crease from previous surgery. Hang in there. It will sort itself out and soon you'll be an old pro at it like all of us.
But trying different bags may help, maybe a convex bag?
anna
08-29-2013, 08:43 PM   #7
Ang71
 
Ang71's Avatar
 
Join Date: Jul 2013
Location: Gold Coast, Queensland, Australia

My Support Groups:

Well it's been two weeks since my surgery I'm still in hospital and still nothing is working my poor stomal nurse has tried everything and I still leak!! As you can see by my pic I'm very red and sore and the thought of another bag going on makes me cry worse when it comes off! I don't know what to do my stomal nurse is only here week days so weekends I'm left to the nurses on my ward that are not educated in stoma care at all.. I'm in Australia and getting treated at the Gold Coast hospital in QLD! Please can anyone suggest anything please!!! I'm ready to end my life because of this
09-05-2013, 09:05 PM   #8
annawato
Moderator
 
annawato's Avatar
 
Join Date: Apr 2012
Location: sydney, New South Wales, Australia

My Support Groups:
Please dont end your life Ang. Things will improve. I'd say 90% of stomas are troublesome in the beginning. Once the staples are removed and the scar heals it will be easier to apply the bag. It does look to be in an awful position so maybe you could talk to the surgeon about having it repositioned? I know more surgery is the last thing you want but it may make the next 12 months a lot easier. Your stoma looks like it is retracted so you may find that a convex bag and belt will help. Your stoma nurse may not have used these yet because it will put pressure on your wound but that will soon be healed.
The sore and no doubt weeping skin will also make it harder to get the bag to stay on. i found mercurochrome good for helping to dry out the skin when mine was like this.
You may find that a bag that has a tape edge worth trying too as it will mold to your shape more.
I'm sorry I can't be of more help. My heart goes out to you. Learning to deal with a stoam is hard enough without having to put up with all the problems that you are dealing with. But it will improve. Just take each day as it comes and speak to your surgeon about alternatives.
anna
09-06-2013, 08:10 PM   #9
Ang71
 
Ang71's Avatar
 
Join Date: Jul 2013
Location: Gold Coast, Queensland, Australia

My Support Groups:
Thanks Anna 💐
My surgeons say surgery is out of the question until jan they had to go in couple of nights ago and open my woud a little in two places to help drain a fistula's that has formed while they were there they did a little refashion on my stoma and it has lifted it a bit. But bags are still not sticking at the moment I concentrating on getting the skin better as I have got some ulcers now once the skin is better I'm hoping the leaking will stop and the bags will stick 😃
09-06-2013, 08:27 PM   #10
nogutsnoglory
Moderator
 
nogutsnoglory's Avatar
 
Join Date: Sep 2009
Location: New York

My Support Groups:
I'm so sorry you are in so much pain and so frustrated by the skin issues. Is there a dry cream they can apply so that you can heal while still applying the flange on top? I know the nurses are off for the weekend but there must be someone on call that can help. I really hope that they can find something healing and can work gently and patiently with you to avoid pain.
09-07-2013, 02:21 AM   #11
annawato
Moderator
 
annawato's Avatar
 
Join Date: Apr 2012
Location: sydney, New South Wales, Australia

My Support Groups:
Getting the skin healed will help with everything. Creams are no good as the oils in them prevent the flange from sticking down. The flange themselves are actually good for the skin - they are the same product as used in wound care. I hope it all settles down for you and I am very glad they refashioned your stoma as it was looking pretty difficult for you to overcome the leakage problems. So all my fingers are crossed that things will improve soon.
anna
09-27-2013, 06:30 PM   #12
Ang71
 
Ang71's Avatar
 
Join Date: Jul 2013
Location: Gold Coast, Queensland, Australia

My Support Groups:
Well I'm home from hospital still having trouble with the bags leaking we are barely getting a day out of them the skin just under the stoma is so red and sore nothing sticks because it weeps. We are trying powder with barrier spray even that is not helping, pastes, paste strips building up we are at a loss on what to do
I've posted a pic if anyone can suggest anything!


09-27-2013, 08:01 PM   #13
nogutsnoglory
Moderator
 
nogutsnoglory's Avatar
 
Join Date: Sep 2009
Location: New York

My Support Groups:
Looks miserable. Is the white stuff fungus? Did they give you anti-fungal cream?
09-27-2013, 09:51 PM   #14
Ang71
 
Ang71's Avatar
 
Join Date: Jul 2013
Location: Gold Coast, Queensland, Australia

My Support Groups:
No not fungus it's cruash powder trying nappy rash powder on it as I can get any creams to rub in because of the weeping.
09-27-2013, 10:25 PM   #15
GutlessWonder86
Forum Monitor
 
Join Date: Jul 2010
has the wound care RN suggested Eakin seals by Convatec??

they can send you free samples for a whole month if you are a new ostomate.

also, what about Convexity wafers? have you tried those?

They have a site for those in Australia. here is their link.

http://www.convatec.com.au/?hwcr=flex

give them a call and speak to the wound care RNs that answer the phone. maybe they can offer suggestions.

I've been using Convatec for 27 yrs. as Hollister just doesn't last for me. It falls off after 12 hours.

take care.
09-28-2013, 01:21 AM   #16
PsychoJane
Moderator
 
PsychoJane's Avatar
 
Join Date: Mar 2011
Location: Quebec

My Support Groups:
Hi Ang,
Sorry to hear you are having hard time with your ostomy
As gutless said, I think you will need some convexity wafer to be able to deal with the situation.
By the way, is it a loop ostomy that you got? Did you discuss, in the worst case scenario, of the possibility of reconstructing the stoma to have it more "functional" in term of appliance, or is this surgery meant to be temporary?
__________________
Diagnosed UC 1999 then refractory CD.
Past Meds: Prednisone, asacol, cyclosporine, cyclophosphamide, mp6, Humira

Currently taking: Omega-3, D-3, med-free for the time being.
~~Oh! n sorry if what I write seems strange at times, English is not my main language!~~

You'd like to chat and feel facebook would ease this point,
send me a private message and i'll do so =)
09-28-2013, 11:17 PM   #17
Ang71
 
Ang71's Avatar
 
Join Date: Jul 2013
Location: Gold Coast, Queensland, Australia

My Support Groups:
Hi Ang,
Sorry to hear you are having hard time with your ostomy
As gutless said, I think you will need some convexity wafer to be able to deal with the situation.
By the way, is it a loop ostomy that you got? Did you discuss, in the worst case scenario, of the possibility of reconstructing the stoma to have it more "functional" in term of appliance, or is this surgery meant to be temporary?
Hi Jane, no it's not a loop, I have a ileostomy, surgeons won't do any thing to it as it's only temporary and the said because of how messy I am inside they are worried they may cause holes and fistulers if they go in early. I had 3 ops in 3 weeks so I can understand why they don't won't to do anymore at this stage. I'm getting it reversed in jan hopefully! I'm using a two piece dansac novalife 2 convex wafer. We use paste, paste strips, convex barrier ring. I'm using cruash baby rash powder on the red skin and barrier spray on top of that. It seems to be healing the redness and seems to be staying on when wet. I'm just trying to get two day out of a bag but I only getting a day if that. Pics of our system are below.
09-29-2013, 11:53 AM   #18
PsychoJane
Moderator
 
PsychoJane's Avatar
 
Join Date: Mar 2011
Location: Quebec

My Support Groups:
Is there any "tabs" on your appliance so you could wear a belt that holds the base plate tighter to your body? I would be tempted to kinda wear that belt a bit "too tight" in hope of allowing your stoma to protude a bit more otherwise, I can only imagine how tricky it might be for it not to leak and the difficulties that are related.

I know coloplast, convatec and hollister have the little "flap" on the side to attach the belt but I can't seem to see them on the picture of the appliance you are using.
That type of belt:
http://www.us.coloplast.com/products...ssories/belts/

These are the flaps:
http://www.coloplast.ca/SiteCollecti...ht_369x400.jpg

I believe it could be helpful and that would be my first idea. Normally I would suggest a waist band but I think It might bring more issue to wear something on top as the stoma is already flush with the skin. Maybe someone has experienced both and could tell about that?
09-29-2013, 07:46 PM   #19
tdeslandes
 
Join Date: Sep 2013
Location: columbus, Georgia
I've just have IIeostomy surgery and am stuck in hospital because my bag keeps leaking. Because of this the skin around the stoma is red raw and very sore! My stoma is not in a good position as I had to have emergency surgery so they didn't find a good position for it, so its around my wound and a crease from previous surgery's and this is wear it leaks! This is my first stoma ever and I hate it!! I'm soo depressed.. Has anyone else had a similar problem and how was it fixed..I have to have this for 12mths but I'm ready to go jump of the hospitals roof already.
Yes i had the same problem i changed bags because my stome is postioned pointed.down so i am now using coloplast bag #15606 they will.send yo sample.to.try out hope this helps
09-29-2013, 07:54 PM   #20
tdeslandes
 
Join Date: Sep 2013
Location: columbus, Georgia
Same problems i tried coloplast # 15606 they will send you samples
09-30-2013, 12:34 AM   #21
Ang71
 
Ang71's Avatar
 
Join Date: Jul 2013
Location: Gold Coast, Queensland, Australia

My Support Groups:
Same problems i tried coloplast # 15606 they will send you samples
Will defiantly give it a try thank you.
09-30-2013, 12:37 AM   #22
Ang71
 
Ang71's Avatar
 
Join Date: Jul 2013
Location: Gold Coast, Queensland, Australia

My Support Groups:
Hi Jane yes I use a belt as well. I also have the waist belt.
We are trying everything, even ring seals as well but didn't help!
Is there any "tabs" on your appliance so you could wear a belt that holds the base plate tighter to your body? I would be tempted to kinda wear that belt a bit "too tight" in hope of allowing your stoma to protude a bit more otherwise, I can only imagine how tricky it might be for it not to leak and the difficulties that are related.

I know coloplast, convatec and hollister have the little "flap" on the side to attach the belt but I can't seem to see them on the picture of the appliance you are using.
That type of belt:
http://www.us.coloplast.com/products...ssories/belts/

These are the flaps:
http://www.coloplast.ca/SiteCollecti...ht_369x400.jpg

I believe it could be helpful and that would be my first idea. Normally I would suggest a waist band but I think It might bring more issue to wear something on top as the stoma is already flush with the skin. Maybe someone has experienced both and could tell about that?
09-30-2013, 09:38 PM   #23
annawato
Moderator
 
annawato's Avatar
 
Join Date: Apr 2012
Location: sydney, New South Wales, Australia

My Support Groups:
Hi Ang, firstly I'm glad you are home from hospital but so sorry you are still having problems. The pics you have posted are great and very helpful to be able to see what you are already doing. The only thing I can suggest is to maybe use a one piece convex. I found with the two piece that the ring that you clip onto would collect output and it would seep around the stoma. I use welland flair convex and they will send you samples like everyone else. I also find a belt essential and for some reason the convatec belt worked better than the velcro ones I got. The only other thing I can add is that I rarely get more than a day from mine. I can go longer without leaking now but it always ends up with sore skin around my stoma. Not nearly as bad as yours. Maybe its better to accept that you just have to change every day at least until you get on top of the skin soreness. I know it is the last thing you want to do as I can see the whole process is a lot more involved for you but it may be for the best.
The other thing is mercurochrome which will help dry out the weepy skin. You can't use it for too long cos of the mercury in it but i found that a few days made a huge difference when my skin was like yours at the beginning.
Have you tried using a one piece convex and what brand of belt are you using? Lastly have you tried different brands? Hollister and dansac didn't work for me and coloplast always leaked but other people love theirs so its important to try lots of different ones to find what suits you.
anna
10-01-2013, 02:54 AM   #24
Ang71
 
Ang71's Avatar
 
Join Date: Jul 2013
Location: Gold Coast, Queensland, Australia

My Support Groups:
We guys I've got some good news my bag stayed on for 2 days maybe longer if we let it no leakage at all anywhere, FINALLY!. We changed it because of the skin when we took the bag off we couldn't believe our eyes my skin had no redness no irritation at all. I used curash baby rash powder instead of the stoma powder only used it twice. I've provided a pic!
Thanks Anna I will try out the wellands web site and see if I can get some samples to try 😄
I wish my stoma looked like yours and in your spot. My belt hooks on the tabs on the bag I've got it tight and I don't take it off only when changing a bag! Thank you so much for your advice and to every one else xxx

10-01-2013, 03:01 AM   #25
Ang71
 
Ang71's Avatar
 
Join Date: Jul 2013
Location: Gold Coast, Queensland, Australia

My Support Groups:
Anna I'm not sure what brand my belt it! I have tried one piece appliances in hospital but once again have no idea what brand my stoma nurse didn't tell me I had tried hollister but I leaked an hour after it went on. I'm using dansac at the moment. As I said it my last reply I will defiantly try and get samples of the wellands appliance.
Thank you 😄
Hi Ang, firstly I'm glad you are home from hospital but so sorry you are still having problems. The pics you have posted are great and very helpful to be able to see what you are already doing. The only thing I can suggest is to maybe use a one piece convex. I found with the two piece that the ring that you clip onto would collect output and it would seep around the stoma. I use welland flair convex and they will send you samples like everyone else. I also find a belt essential and for some reason the convatec belt worked better than the velcro ones I got. The only other thing I can add is that I rarely get more than a day from mine. I can go longer without leaking now but it always ends up with sore skin around my stoma. Not nearly as bad as yours. Maybe its better to accept that you just have to change every day at least until you get on top of the skin soreness. I know it is the last thing you want to do as I can see the whole process is a lot more involved for you but it may be for the best.
The other thing is mercurochrome which will help dry out the weepy skin. You can't use it for too long cos of the mercury in it but i found that a few days made a huge difference when my skin was like yours at the beginning.
Have you tried using a one piece convex and what brand of belt are you using? Lastly have you tried different brands? Hollister and dansac didn't work for me and coloplast always leaked but other people love theirs so its important to try lots of different ones to find what suits you.
anna
10-07-2013, 05:29 PM   #26
Ang71
 
Ang71's Avatar
 
Join Date: Jul 2013
Location: Gold Coast, Queensland, Australia

My Support Groups:
Anna I have welland appliances in the mail and heading to me. The lady I spoke to was very helpful and she is sending me out some other samples of there products which she thinks might help. Thank you and I will keep u posted to how they go
Reply

Crohn's Disease Forum » Surgery » Stoma Subforum » IIeostomy stoma bag keeps leaking :(
Thread Tools


All times are GMT -5. The time now is 06:18 PM.
Copyright 2006-2017 Crohnsforum.com