My niece has had her 2nd op about a month ago. She is due to have the final link-up to her J pouch at the end of January.

However, her surgeon has made a pig's ear of her stoma. Not only is it so short that it recedes inside when it functions, but it also leaks out of the side.

The stuff that comes out is like acid on her skin and she's taking painkillers all the time, but they are not much help.

Her skin is red raw and she's in agony. Different barrier creams etc. haven't eased it and, due to the stoma disappearing inside, she can't tape it up.

Has anyone else had this? She can't go through another month in this agony.

Hi Puddy, What a lovely aunty you are.

If I knew more about you niece's background such as which ostomy system she is using, what preventatives/barriers she uses and her age I may be able to help more.

Is she wearing a convex wafer? The convexity should help to push her stoma out and into the bag, thus avoiding the skin excoration.

There are other things to try such as moldable convex wafers and eakin seals which would also be beneficial.

Pain killers really won't help much with skin excoration, nor will they help to heal the damage to the skin. Has she seen a good stoma/wound care nurse?

I really hope that she doesn't have to deal with this for another month. Please pass on my best wishes for a resolve to this soon for her.

Take care.

Shell

Thanks Shell. She's 36 and does use a convex thingy. Trouble is, her stoma is so short that it still leaks underneath and out of the side of the stoma itself. I've suggested she turn up at A & E - maybe they'll have to do something earlier. Her skin is so raw it kills her having to attach the bag. She can't even leave it off while she's at home because it withdraws inside.

Don't know if her stoma nurse is any good or not - we've no one to compare her with.

She's allergic to latex and has tried every cream known to man! She's also got a 4 year old to look after.

I ve got loads of spare Eakin seals ..would you like me to post them to you?
My stoma was flush to skin and i had simmillar problems. The eakin seals rings have been a godsent. The art of making them work is in applying them correctly. You need to do thsi in the moring, before having a drink,,when stoma is "asleep". You need to clean the area around with water then dry well with swabs and hold folded swab over stoma as you apply powder around it. Then you need to seal the powder with barrier spary..i used 3Ms one. The reason you need to hold the swab on stoma so as to keep all moisture from skin when youa re doing this. The seal spray needs to dry,,half a minute or so. Then..u apply the eakin seal around stoma.I used tocut the circle so i could go all around stoma right up to edge but not over. Press it all around and then put on conves appliace(I used Assura two piece one).
Keep pressing till you are satisfied that it is tight and staying on. Only then stop dabbing stome with the swab,,this ensures eaking seal goes onto dry skin, so it wont leak. This can be left for 3-4 days ..i d keep it on for at least 2-3 as the skin repairs itself if undisturbed. EAkin seals are made by Salts in the UK.
Good luck with it all,,its doeable if you persevere.Message me if you need further advice.

Thanks so much, Martiangirl - I've messaged you.

I ve sent the parcel 1st class so hopefully will be with you tomorrow.
x

Puddy,

I had the same problem with my stoma. Mine too retracted in and stool dumped right onto my skin. I had several ET nurses look at my stoma. I used Assura flexible convex one piece bags. They seemed to work the best and stay on the longest. I had a problem of popping off bags real easy. I think the flexibility in this appliance helped a lot. One of my nurses had me use a solution called Domboros (I'm not sure if I spelled that correctly). This solution is an astringent. I bought it over the counter near products for poison ivy. It helped with the weeping of my skin and dried up the sore. I mixed the Domboros with water and then I soaked a paper towel in and put it on my raw skin. This help a lot with pain and burning. It seemed to calm it. My peristomal skin would bleed quite often and this was the only releif I could find. Good luck. I hope things improve for your neice.

Martiangirl - what a star you are! We can't thank you enough. All the very best to you.

Kwad Rider - thanks so much for your input - that's another road we can go down. I bought loads of nappy (diaper) rash cream this morning for her to try.

All the best to you too!

The stuff arrived, Martiangirl - thanks soooo much.

I've sent you a postal order for the postage.

Well! Mandy had an appointment with the stoma nurse and found that the really sore bit, the bit she's been trying to heal is actually a piece of her bowel which is poking through!!!!

The surgeon had seen it recently and hadn't mentioned it, except to say that it wasn't the best piece of surgery he'd done!

Great! If nothing else, with what all you guys go through, the least they could do is make sure the stoma's properly done!

Anyway, at least her next surgery is 24th January, so not much longer for her to wait.

Doesn't exactly inspire confidence though, does it?

Puddy,
How is a piece of bowel poking through ?..is it next to her stoma?..trying to imagine it and cant.Does it mean there is no skin around her stoma? Stoma usually is a piece of bowel poking through skin,,that is what it is...
How is she coping with the care for it now?..would the eakin seals be helpful in this scenario? I sincererly hope so. Like you said not long to wait now.

She's got a loop - upstream and downstream.

The piece of bowel is coming from underneath the stoma.

The 'Eakins' turned out to be what she calls 'washers' but she hadn't seen the cream/spray before.

The stoma nurse showed her how to put the bag thing on, taking into account the piece of bowel, and it's ok for longer periods of time now.

Thanks for everything.

This message has been edited. Last edited by: Puddy,

Oh , ok, so its almost like mimi hernia of sorts next to stoma.
I am glad the stoma nurse had helped her out and that it ll stay on for longer

I had that with my loop. You could see the downstream part of it underneath the part that is supposed to stick out. In fact I had all sorts of tests done to see if my j-pouch was leaking and one of them was to put contrast into it.

Ewa, the best way to describe it is if you can imagine that a loop ileostomy is like a hosepipe that has been bent in half and then pulled through the abdomen. Then a slit is cut into the top of the loop. They then push the lower portion back inside and pull the upper portion out to protrude into your bag. They then put a bridge under the loop and leave it there for about week while the stoma is healing. In some cases (like mine and Puddy's niece) the top part of the loop pulls back in so that it reveals the bottom part.

This also explains how it is that you can get an overflow of stool into your j-pouch. If your bag is full or when you are lying down stool can bypass the bag and flow down the lower portion of bowel and into your j-pouch.

Hope this explains it ok and I haven't confused you even more!

Shell

Shell,
My loop ileo had two little slits in it..one for mucous i think and one for stool.Not sure if that is common.

Ewa, It sounds like you just had a regular loop as I described. A lot depends on the way your surgeon created your stoma. Sometimes the two holes appear side by side and sometimes they are one above the other, with the disused section usually being at the bottom. Mucous does come out of the lower portion because it's from the unused part of your ileum which will still produce mucous.

Shell