Problems with leaking bag....

[colin ledgard]

How long do you have to have this bag leeking evry time I try to do a days work. doc's told me 6 months 3 years later still having problems. Keep loseing job's and starting to lose mind.

 

[Ginger is her name]

Have you tried using a stoma past or other appliances?

 

[Lisa]

Colin -

Can you give some additional information on what type of appliance(s) you have tried? There are quite a few members here who are living full lives with stomas, some did go through rough times adjusting and it took time to find the 'right' set up to avoid leaks, breakdown etc...

 

[Spooky1]

I feel for you Colin. My mum has issues similar to yours and there are others on here that have huge output so can't live a normal life. Can it be reversed? Oh and some people are having the bionic bum! its an operation on the anus and uses a remote control to open it up when you're on the loo.

Please let us know you're ok, Please.
Do you not get ESA/DLA

 

[Spooky1]

Can you have IV tpn nutrition? I know paddy holmes on here has huge issues and doesn't go out much at all cos she runs to empty her bag so frequently. There are others. I read recently that because the output was too great for the bag a man on here had got his reversed. My gastro bloke told me years ago that an ileostomy is not appropriate for all people. My whole digestive tract is affected with crohns and i'd be just like you. I'm contacting about TPN myself and give my whole intestine a break.

 

[Spooky1]

Really hoping ur seeing these messages.

 

[colin ledgard]

Thanks for all the sergestion but I think il go with plan D death is the best action I can take. There anouther one for you to delete.

 

[Spooky1]

Please seek out a specialist surgeon that can help you with a bionic bum or perhaps even on the stoma.

 

[Spooky1]

Oh, by the way. have you spoken to stoma nurses? how about asking your doctor if he can find a renowned specialist that can help you. \my mum has these difficulties too. I wish more had come forwards to help in any way they can. It's bad enough having diarrhoea but at least we have a sphincter in our anus which helps us get to the nearby loo. A bag can just fill up so quick that its full, heavy and off. Have you tried questran with it or perhaps psyllium husks? I don't know if they would slow things down so that you could get to the loo to empty the bag and take control. Believe me there are others like this. I know though that people like me would not get employment.

 

[Jennifer]

Adding some threads that may help:
http://www.crohnsforum.com/showthread.php?t=55079
http://www.crohnsforum.com/showthread.php?t=55523
http://www.crohnsforum.com/showthread.php?t=44424
http://www.crohnsforum.com/showthread.php?t=13935
There are many more threads out there, just use the search feature on the upper left and type in "leaking bag" or a similar search.


Tagging some members to try and get their input. Some of you are going through the same thing right now so I'm hoping that you all may be able to help each other by offering understanding and support.
Nyx
Ang71
DJW
annawato
nogutsnoglory
Hobbes650
katiesue1506
Terriernut
2thFairy
Misty-Eyed
Susan2
Absentminded

Thank you everyone.

 

[2thFairy]

There are foods you can eat that will help thicken up the output and give you better control over leaks. Potatoes seem to help just about everyone to some degree (baked, mashed, french fries, crisps), rice, pasta, bread, CHEESECAKE, applesauce, gummy bears, marshmallows. Psyllium husks are really good for this.

As for gear, I don't know what all you have tried, but I've seen many people on this forum in the UK speak praises of Salts and Eakin rings around the stoma to help prevent leaks. Brava strip paste and Coloplast bags work great for me, but not for everyone. If you are having trouble with the very edges of the bag coming loose and this leads to the leaks you are having, there are Brava extensions that go around the edge of the baseplate and give extra hold to the skin. You might also try a belt to help hold the bag in place. Another thing that you try is using tincture of benzoin. Its a very safe skin glue. It is used after surgery to hold bandages on. This works great with stoma bags and is easy to remove from the skin during bag changes.

I wish you the best. Don't stop trying out stuff until you find the right combination. There are so many options and new things coming out all the time. What works for one person won't always work for another.

 

[colin ledgard]

Don't have stoma nurse stopped sending me apotaments 6 mouths after operation 3 years ago haven't see doctor since 2011 when he reveled wasn't going to reverse my stoma after he told me he'd reverse it after 6 to 12 mounths . So I have give up on all of them all thay do is bullshit me so fuck it.............................................................................................................................................................................................

 

[Jennifer]

Is it possible for you to see another doctor to talk about a reversal?

 

[annawato]

Hi Colin, it may well be worth seeing another doctor. Perhaps your stoma can be reversed now. Are you on any meds for crohn's? Have you had any trouble since you had your stoma?
As 2th fairy said it may help to try different appliances to find one that works better. All the companies will send out samples - their phone numbers are in a 'sticky' at the top of the stoma page. Also the benzoin which is called friars balsam here in Australia is meant to be fantastic for helping things to stick.
I hope some of our suggestions help. In the meantime remember you are not alone in this. We are all here to help if we can.

 

[Spooky1]

Colin, is it possible to go to another hospital and see their specialists? It's no good living with leaky bags. Someone is obliged to do something. Have you phoned Crohns/colitis.uk which used to be the national association for colitis and crohns. They have helplines. They might recommend a doctor in London or something.

 

[DJW]

Hi Colin. I don't have anything new to add. Nobody should have to put up with the crap you've put up with.
I hope you can see a stoma nurse to get this sorted out.

My solution to constant leaks was a change in manufacturers. I went from holster to convatec Sur-fit two piece with Eakin seals. I use a belt and cut the opening so there is a 1/8 gap between the stoma and wafer. I put stoma powder in the gap.

 

[glum chump]

Hi Colin:

Not sure that I have anything new to add. I just wanted to write and say that I understand your despair and anger that your bag continues to leak and the ways that messes up trying to 'have a life.'

The recommendations I have is to insist that you see a stoma (ET) nurse. Let them take a look at your stoma and the skin around your stoma, to figure out and for you to try different gear to see if that makes a difference.

Sounds like there is something definitely going on in your body...whether the adhesive on your appliance doesn't mesh with your skin, or if you require paste to build up the skin area should you have any dips in the surrounding area, or whether you might have some kind of wetness (from skin issues...I had a 'weeping wound' that I didn't know was there) so you might need to take care of that and then use stoma powder to 'dry' your skin before putting on your appliance.

The nurse might make recommendations for you to use a seal or if you're using a seal, to use a different kind of seal. You might also want to tape (picture frame) the flange for extra security.

I get how frustrating leaks are and that you get to the point of wanting to pack it in. But I hope you're able to get to an ET nurse and have them help you sort out what the issues might be.

Let us know how you make out.

Cheers,

Kismet

 

[ostomy77]

Will tincture of benzoin BURN already messed up red skin around a flush ileostomy stoma??
Thanks

 

[DJW]

Hi and welcome.

I don't think it will.
Are you using a convex waffer?
Have you talked to a stoma nurse?

 

[ostomy77]

Yes I have convex barrier and belt; used to wear old reusable Marlin 2 piece for like 5 to 7 days; newer throw aways only last 2 to 5 days,also have dip on side and stoma is flush.WOC nurses say change more often?Guess I was spoiled for 35 years and now need more often changes?