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Emma
 Emma
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October 23, 2019 9:12 pm  

Hello everyone! Newbie here with a lot of questions and issues.
I had a Duodenum rupture and abscess July 2, 2019 which brought me straight into the OR where they did a laparotomy and I ended up with an Iliac fistula and an ostomy. I was just discharged last week after 4 months in hospital.
Here's the issue. No matter what appliance/bag (you name it) used, the leakage was just terrible. It still is though not quite as bad as before. My surgeon said it would heal in time but very slowly.
I don't have a stoma but rather a small "hole" which is the Iliac fistula. Nothing will stick nor make a seal without it leaking in a matter of minutes to a couple of hours. Because of the Laparotomy, my stomach looks more like the Andes because of the folds and creases. Therefore, no matter what I try, it leaks underneath the wafer part. I use a barrier ring but to no avail.
My skin is beginning to show signs of redness and hurts like the devil.
If anyone has any suggestions I would be most grateful. I use an all-in-one system which seems a little more effective that the 2 piece.
I haven't tried the paste but have coming.
Thank you for listening.
E.

Laurie Connors


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SqueakyandLiza
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October 23, 2019 9:33 pm  

Hi Emma/Laurie,

Welcome to this site!! I hope you get as much out if it as I do. 

I don’t recognize the names of everything you had, but I do know a bit about leaks. My stoma is flush to the skin and had the opening to the side so I have had my fair share of leaks. The paste makes a pretty big difference to me, much more effective than the rings. I put it all the way around my stoma, and I would suggest you at least try the same thing-going all the way around your opening. I can usually get at least a day and often longer that way.   

The paste can be a little messy and hard to apply. The trick I have learned is to use a cotton tipped applicator and get the cotton wet so it doesn’t stick to the paste and use that to spread the paste around the stoma. I squeeze the paste onto my skin and then spread. 

Best of luck. I hope the leaks stop. I know how discouraging they can be!!

-Liza
“May your day be bright and your bag be light.”


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Emma
 Emma
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October 23, 2019 10:28 pm  

@squeakyandliza

Thank you so much for your insight. I am hoping for a more comfortable fit (not to mention dry).

The location of your fistula sounds very similar to mine so I'm keen to try your advice! :-) 

Laurie Connors


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LLNorth
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October 24, 2019 12:55 am  

Hi Emma,

Hello and best wishes! There are a lot of tricky things to work out, I know

LL

I love the smell of coffee in the morning. It smells like .... victory.


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SqueakyandLiza
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October 24, 2019 1:22 am  

Emma, 

The other thing I forgot to mention—have you tried a convex wafer?  That may help too. 

If you don’t mind my asking, I’m not sure I understand...  Do you have a stoma, or is it just a hole in your tummy that is acting as a stoma?  Just a hole instead of a stoma seems like it would be even harder than a flush stoma is. You said the doctor said it would heal. Is that the hole that will heal?

I’m still relatively new, so hopefully some others will chime in too. 😀

-Liza
“May your day be bright and your bag be light.”


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john68
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October 24, 2019 4:51 am  

Hi Emma, Welcome to the forum, yes a convex is a great solution for a flush stoma, could you give some more detail on the type of stoma you have. Also do you have excess to a stoma nurse 

ileostomy 31st August 1994 for Crohns


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Emma
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October 24, 2019 10:23 am  

 

@john68

Hi John and thank you for your reply. I do not have a stoma. Rather, it's a small hole near where my belly button is. It's more internal rather than an external stoma (which would be easier to fit the wafer around). 

This is the best image I could find.

Image result for abdominal fistula

Laurie Connors


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Emma
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October 24, 2019 10:32 am  

@llholiday

Thanks!! It's amazing how many "professionals" can't seem to come up with and answer as to the best thing to use.

I found a site that will send free samples (Coloplast etc.) Right now it's a little cumbersome having to reinforce with feminine products just to help absorb. :roll: 

Laurie Connors


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john68
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October 24, 2019 11:41 am  

Hi Emma, having no stoma is this supposed to be a temporary thing? I can see how you are having issues 

ileostomy 31st August 1994 for Crohns


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SqueakyandLiza
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October 24, 2019 2:39 pm  

Hi Emma, 

Fistulas are the worst!!  I have a couple I am dealing with. 

I have a couple questions, but only answer if you are comfortable doing so. So the hole in your tummy - is it stool coming out of it, or is it drainage of some sort? If it is stool, does it all come out through the hole, or are you also able to use the toilet?  

As far as the skin goes, there should be things you can do. Ask the company who sends you samples for barrier wipes and stoma powder. You can use those to protect your skin - it is called crusting. I personally use something called marathon. It is a little spendy but it works like a charm. 

Keep asking questions!!  Good luck!!

-Liza
“May your day be bright and your bag be light.”


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VeganOstomy
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October 24, 2019 3:26 pm  

Welcome, Laurie!

I'm sorry that you're going through that. I've had fistula before, although not in the same area, and they are the devil to work with. 

Because it's quite complex, a stoma nurse would be helpful (they deal with fistula and wounds, so just because it's not a stoma, doesn't mean they can't help). 

How close is the fistula to your stoma? Do you have one single bag for both openings or a special one for the fistula? How much does it drain in a day? Is it enough to warrant using a bag or would something like an absorbent pad work better?

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


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Emma
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October 24, 2019 4:50 pm  

@squeakyandliza,

I'm very comfortable in answering questions because that's the only way to get some answers/insight.

It's mostly liquid that leaks. I do have the occasional BM through normal means.

Yes the "hole" is very small and is imbedded in my tummy (like the spout of a volcano)…if that makes sense. 

I do use stoma powder which seems to help as well a Cavilon (sp?). Because of the creases I've ordered a barrier paste rather than the rings but it hasn't arrived yet.

Laurie Connors


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Emma
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October 24, 2019 5:14 pm  

@veganostomy

Thank you for your reply.

I only have the fistula...not a stoma. It's about 1/4 deep surrounded by the skin and the wound.

Please see the above diagram I sent o John. I only use one bag and find that the all-one works a little better though it still manages to leak beneath the wafer despite the barrier ring.

Drainage amounts vary so its hard to quantify. 

LOL...I tend to go with several absorbent pads daily :-)

Laurie Connors


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LK
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October 24, 2019 5:37 pm  

@emma

Welcome Emma! I am sorry you are having this trouble.  You have good people helping here so I just wanted to greet you and wish you all the best and to assure you we are here for you in whatever way we can help. There are more places to get samples and Eric has a list of that also. Go to all of them if need be. Ask anything you need and we will all do our best to help if we can. Do not lose heart! Keep your sense of humor in tact and if its missing right now, that is understandable, try and find it again. :roll:  Not always easy!  Be well!

Linda


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Emma
 Emma
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October 24, 2019 5:41 pm  

@dlkfiretruck

Awwww...thanks Linda. I'm amazed at how people can reach out a helping hand.

So happy o have found this site!!

 

Laurie Connors


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Tony
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October 24, 2019 5:53 pm  

Hi Laurie,

 

I don't have your experience and can't give you any advice, but I also just wanted to extend a warm welcome. As I like to tell newbies, you've struck gold finding this community.

Tony
Crohn's diagnosed in 1995.
Spontaneous colon perforation and emergency end ileostomy surgery in 2018.
No colon - still rollin'!
No eyesight - life still bright!
Stomaversary - December 4th


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Emma
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October 24, 2019 5:58 pm  

@ileostony

Thanks so much!!! No matter the uniqueness of our situations, there is always something to understand and learned! :-)

Laurie Connors


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sjlovestosing
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October 25, 2019 7:22 am  

Hi Emma,

Welcome to VO! I am glad you found this site. It has been a literal God-send for me. Sorry to hear about all your obstacles. As Linda pointed out, a good attitude is everything and half the battle. (Though I do understand and know about "down days".) 

Your situation sounds more like a drain, rather than a stoma-like incision. Am I correct in assuming this?

God bless,

Stella


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Emma
 Emma
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October 25, 2019 9:32 am  

Hi Stella! 

Thank you for your reply.

It's really hard to explain the exact description of the fistula. The opening in my stomach is, maybe, an inch long. INSIDE of that there is a very tiny hole which is about a slightly larger size of a pencil nib (that's a tiny part of the Ilium and thus the fistula. It's really a small opening. No stoma.

It (the wound itself) is more like a crater with the fistula about 1/8" down inside. 

Because of the surgery, which required exposing all of my internal gut, my skin around the site is like creased and bumpy which makes it so difficult to properly adhere the wafer when there are no exposed underneath parts (even a small wrinkle can cause a leakage underneath).

Now, last night, I was careful to thoroughly cleanse the site, applied Cavilon and attached the barrier ring directly to the part of the bag (all-in-0ne) when it sticks around the site. After pressing it down for a good 5 minutes to ensure a good seal I attached a little Tegaderm to the known sites of the "escape" route.

Lo and behold, it hasn't leaked once!!! YAY!!!! In fact, there's barely 25 cc of liquid in the bag.

So I'm hoping to repeat the procedure when I have too, but so far so good!!!

 

Laurie Connors


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Tony
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October 25, 2019 12:29 pm  

Wow Laurie! Thanks for sharing your triumph with us. Dreading leaks is mental torture, and the peace of mind that comes with overcoming a leak problem has no substitute. Now someone else who has the same issue can find this thread and have a tip to try.

Tony
Crohn's diagnosed in 1995.
Spontaneous colon perforation and emergency end ileostomy surgery in 2018.
No colon - still rollin'!
No eyesight - life still bright!
Stomaversary - December 4th


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