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New Ileostomy

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(@cardc)
Joined: 3 years ago
Posts: 19
Topic starter  
  1. Hi - I am a Chrons patient since 2004 and have battled through with minor surgeries until last year. In October I had emergency proctocolectomy, they formed a ileostomy but could not complete the surgery. I had completion surgery 9 weeks ago and am starting to get beyond the wound issues etc. joint pain and stoma pain are a challenge but I am hoping that will ease as my system gets back in its feet. Time will be a great healer! Biggest challenge that I would love to hear some help and thoughts on are to do with leakages around my bag. I have inconsistent output and I am using a convex bag with a barrier ring, but I am finding that I am getting leakage now on a daily basis and my skin is starting to break down. Is there tips and tricks that people might pass on to try and alleviate this.  One of my main hopes post survey was a better quality of life and the confidence to start leaving the house more frequently etc. ultimately quality of life is better, but if I could get another few steps forward it would be great. Cheers Dave I

   
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VeganOstomy
(@veganostomy)
Admin
Joined: 11 years ago
Posts: 4372
 

Welcome, Dave.

I'm glad that you're finally on the path to healing, especially after so many years with Crohn's. 

Leaks can be common, especially at the begging, but there are some things to try. 

I have an entire article that highlights some causes for leaks, which you might find useful: https://www.veganostomy.ca/ostomy-leaks-tips/

I would also suggest getting in touch with a stoma nurse who can assess your skin, appliance, and technique to find the most optimal solution. 

You mention that you're using a convex wafer + barrier ring. Did a stoma nurse recommend this combination?

Is your stoma flush with the skin or retracted, or does it stick out? If it sticks out, you don't need a convex appliance, and probably not even the barrier ring. This would be something that a stoma nurse can confirm after an examination. 

Take care! 

Just your friendly neighborhood ostomate.
~ Crohn's Disease ¦ Ileostomy ~


   
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(@cardc)
Joined: 3 years ago
Posts: 19
Topic starter  

@veganostomy thanks for the quick response. I am using the barrier ring and the convex bag on advice from my Stoma nurse. My stoma is not retracted from what I can tell, the basis of moving to convex was that the flat bag had leaked. That worked well for a while. My stoma sticks out.Now I am changing daily and skin is very sore. I will go and see the stoma nurse next week. In your experience does the consistency of your output (thick versus thin) have a impact of leakage? I will look through the link also. Cheers Dave


   
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VeganOstomy
(@veganostomy)
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Joined: 11 years ago
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Posted by: @cardc

In your experience does the consistency of your output (thick versus thin) have a impact of leakage?

Yes, it most certainly can. Liquid and loose output can lead to more opportunities for leaks. 

Because you have an ileostomy, make sure that you're using an "extended wear" wafer, as it can handle aggressive output better than "regular" or "standard" wear products. 

How soon after you apply your wafer do you get leaks? And do they happen during the day or at night?

Good luck at your next appointment! 

Just your friendly neighborhood ostomate.
~ Crohn's Disease ¦ Ileostomy ~


   
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(@john68)
Joined: 7 years ago
Posts: 2058
 

Hi Cardc, Firstly Welcome to the forum. It’s certainly a life changing event living with a stoma. I echo all that Eric says. Keep it simple and don’t over do products. A longer stoma is a great start. Measure often as it’s gonna change size. Watch out for oily soaps etc. Find a comfortable wear time, don’t try to stretch it out. Take time when changing don’t rush. Clean dry skin before applying the wafer. Wrap the stoma as it will wet the skin. I am fond of using a hair dryer to dry and heat the wafer. It helps with adhesion. Just be careful not to burn! Just a gentle heat. Very normal life can be achieved, don’t judge what things will be like by the early days. Do avail of the information here on VO ! It’s the best you will find. Best wishes 👍

ileostomy 31st August 1994 for Crohns


   
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(@cardc)
Joined: 3 years ago
Posts: 19
Topic starter  

@veganostomy forgive the question, what is a “extended wear” product? The leaks are starting within hours of applying the new bag. I do find that they are at their worst in the mornings. 


   
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(@cardc)
Joined: 3 years ago
Posts: 19
Topic starter  

@john68 thanks for the response. The hair dryer is a great tip. Do you mind me asking a diet related question? How do you manage fibre in your diet with your ileostomy, I was in either low residue or liquid only diet for the 3 years prior to surgery and have had a few partial blockages with my ileostomy and am terrified of adding fibre. What has worked for you? Apologies for all the questions, eager to learn. Cheers dave


   
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(@john68)
Joined: 7 years ago
Posts: 2058
 

Ah Dave the “f” word. Any new foods introduce a little at a time to find how they work. I eat a most food including those high in fibre. The only one I really avoid is sweet  corn. Yes fibre will thicken so I spread it out over the day ie small amounts at a time. How food is prepared has a lot of effect. I luv veg soup full of pearl barley peas etc. When it’s ready I use a stick blender to break down. some Folks seem to have more trouble than others for some reason. Test slowly think about how it’s cooked and chew well. Plus fibre is a great way to thicken up very loose output. Also never be sorry to ask a question. We all had to learn and continue to do so 😀

ileostomy 31st August 1994 for Crohns


   
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(@cardc)
Joined: 3 years ago
Posts: 19
Topic starter  

@john68 Thanks again for that. 


   
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VeganOstomy
(@veganostomy)
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Joined: 11 years ago
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Posted by: @cardc

what is a “extended wear” product? The leaks are starting within hours of applying the new bag. I do find that they are at their worst in the mornings. 

I answer the question in more detail in this article: https://www.veganostomy.ca/guide-to-ostomy-wafers/#Extended_and_Regular_Wear

But if you're getting leaks within hours, then it's not because you aren't using the right wafer "type". 

Are you getting any clues as to when the leaks actually happen? For instance, do you feel any pain as if the wafer is pulling from your skin? Or does your bag get really full (of gas or output) and then the leaks happen? 

Are you cutting the hole in the wafer so that it's snug around the stoma, or do you leave a gap? 

Here's a trick you can try to get a better seal around the stoma: When you apply a new wafer, get an empty toilet paper roll (or any tube shape that fits just around your stoma) and use that to apply gentle pressure on the wafer for about a minute. This will help the adhesive to get a good bond. 

And do you have a lot of abdominal hair? If so, are you shaving it before you apply your wafer? I find that hair causes all kinds of problems with the wafer. 

Just your friendly neighborhood ostomate.
~ Crohn's Disease ¦ Ileostomy ~


   
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Tony H
(@tony-h)
Joined: 8 years ago
Posts: 336
 

@cardc  Hi and welcome , in my case regarding diet ,the big problems are , mushrooms , celery and steak ( unless cut into tiny pieces , everything else don't cause me ny problems , 

I eat mainly fish ,chicken and the odd burger ,rice pasta , potatoes and most other veg ,

I do find if I have a partial blockage  coca cola and hot tea helps a lot ,

As John said try small amounts to test them and you will be eating fairly normally in no time 

Keeping the skin around your stoma healthy is something you really have to watch , 

There's great info here on everything you need to know ,just ask , 

I'm 5 years post op and I don't think I would have managed so well without Eric's many helpful vids and tutorial s


   
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 Rick
(@rick)
Joined: 5 years ago
Posts: 124
 

What about stoma barrier paste?  This fills in any uneven skin areas/crevices..just a thought


   
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(@cardc)
Joined: 3 years ago
Posts: 19
Topic starter  

@veganostomy from what I can tell the leaks are happening due to a number of factors, the inconsistency of the output and a vacuum in the bag. Over last two days I have started putting the barrier ring directly into the bag first and trying to get it as sealed as possible. I am still using the convex bag as it’s all I have at the moment and I do think that may be part of the problem. Does acidity of output affect the bag? The leak is travelling under the wafer and the barrier ring, but following your advice over last few days and John re the hair dryer, it has improved but is still leaking, I am changing the bag now every 24 hours. I am removing abdominal hair and I used the empty toilet roll.

I cut the hole in the wafer to be snug without over lapping the stoma itself and I do have a good amount of gas but I am burping the bag and massaging the output down the bag.

apologies for essay!

cheers

dave


   
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(@cardc)
Joined: 3 years ago
Posts: 19
Topic starter  
Posted by: @tony-h

@cardc  Hi and welcome , in my case regarding diet ,the big problems are , mushrooms , celery and steak ( unless cut into tiny pieces , everything else don't cause me ny problems , 

I eat mainly fish ,chicken and the odd burger ,rice pasta , potatoes and most other veg ,

I do find if I have a partial blockage  coca cola and hot tea helps a lot ,

As John said try small amounts to test them and you will be eating fairly normally in no time 

Keeping the skin around your stoma healthy is something you really have to watch , 

There's great info here on everything you need to know ,just ask , 

I'm 5 years post op and I don't think I would have managed so well without Eric's many helpful vids and tutorial s

Tony - thanks for that. Cheers dave


   
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(@john68)
Joined: 7 years ago
Posts: 2058
 

Hi Dave, Are the leaks happening in the same place. When the bag is empty try rolling some toliet paper into a marble sized ball and put into the bag. A little air can help pancaking. If your bag has a filter block it off. 😀

ileostomy 31st August 1994 for Crohns


   
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VeganOstomy
(@veganostomy)
Admin
Joined: 11 years ago
Posts: 4372
 
Posted by: @cardc

vacuum in the bag

This can be an issue and an annoyance.

As John suggested, try putting a was of toilet paper in your bag to help separate the walls of the bag. 

If your bag has a filter, cover it from the outside using tape or a filter sticker. I sometimes add air to my bag to help with that vacuum effect. 

Just your friendly neighborhood ostomate.
~ Crohn's Disease ¦ Ileostomy ~


   
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(@cardc)
Joined: 3 years ago
Posts: 19
Topic starter  

Thanks guys - I am ensuring there is air in the bag and that’s helping. Ultimately it also sounds like I need to look for a non convex bag. Really appreciate all the help and advice. Cheers dave


   
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(@squeakyandliza)
Joined: 6 years ago
Posts: 1036
 

Hi Dave,

Welcome to VO. I also suffer from frequent leaks, so I can feel your pain. I used to use paste to fill the crevices in my skin. I have moved on to the barrier rings. They seem pretty equally effective to me, but the rings are much easier to clean off my skin. I also use a convex wafer, but I need the convexity. 

Every now and then I will have a wafer last up to 5 days or so, but 1-2 days is the norm. It has been such a frustration for me. 

Do you have creases/crevices in your skin?  I do, toward the middle of my tummy, and that is where 95% of my leaks happen. So now I put a ring on my wafer, overlapping the hole. Then I tuck it around the edge of the hole. I hope that makes sense. That has been working better than putting the ring on my skin first. I also cut a piece of another ring and reinforce the leak area, directly onto the skin before putting the wafer on. 

Part of my problem is that I have a fistula from my small intestines to the side of my stoma, so I get stool coming out to the side sometimes, which gets under my wafer, in my leak spot. 

Hang in there!!  I hope it gets better for you soon. 😀

-Liza
Ileostomy 6/18/2018
“May your day be bright and your bag be light.”


   
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(@cardc)
Joined: 3 years ago
Posts: 19
Topic starter  

@squeakyandliza Lisa thanks for that and the welcome. I am putting the barrier now directly into my skin and I now think a part of the issue is that I am using a convex bag, I need to find a flat bag that works for me. My skin is sore and weeping around the stoma, but I am back with the stoma nurse this coming week and will hopefully get some bags to try etc.

it is great to hear how you are managing the stoma and the fistula, that is not easy. Thanks for the advice.

it’s a new world for me and it is very helpful to see all the positive input and advice on this forum.    Getting my head around this new normal is tough but this helps.

 

cheers

 

dave


   
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VeganOstomy
(@veganostomy)
Admin
Joined: 11 years ago
Posts: 4372
 
Posted by: @cardc

My skin is sore and weeping around the stoma

Solving that problem will give you better wear time, since wafers don't generally stick very well to weepy skin. 

If you have the option, try leaving your appliance off to "air out" and give your skin a rest. When I do it, I'll hang a small bag from my pant waist so it collects any falling output. 

Just your friendly neighborhood ostomate.
~ Crohn's Disease ¦ Ileostomy ~


   
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