Share Facebook
Crohn's Disease Forum » Surgery » Stoma Subforum » Inverted stoma - problems with leakage onto surround skin


 
10-27-2012, 04:18 PM   #1
persephone300
Senior Member
 
persephone300's Avatar
 
Join Date: May 2012
Location: wiltshire, United Kingdom
Inverted stoma - problems with leakage onto surround skin

My new stoma is very inverted - they said it was due to my weight, and that when I lost weight, it would stick out more, but it is causing problems. Plus the "hole" is right at the bottom, so when it leaks it basically has nowhere else to go but on skin.

They're trying me on a concave bag to try and stick it out a bit more, but when I changed the bag today I did notice that it has still leaked under the seal a little, and the skin is looking really angry, and stings every so often, which I assume means it is still leaking a bit.

Does anyone else have the same problem? Are there ways around it, does it get better? I think no matter how hard down the bag is stuck there will be inevitable leakage when the hole is that close to the skin.

I'm a little nervous about trying to manage it myself until I see the stoma nurse in the week, in case it gets even angrier, and I have trouble getting it to stick next time.

Would changing the bag twice a day help, or keeping it on longer, not really sure.
__________________
Diagnosed IBS 1999, panic disorder 2004, finally,Crohns 2006.

Taken numerous drugs all had side effects/hasn't worked so had subtotal colectomy 19th Oct 2012.

Probs with inverted shrinking stoma, daily leakage, burns, pain, miserable. Revision March 2013 and much better quality of life, but occasional leakage, burns and a stoma that refuses to stick out every day is the norm.
10-27-2012, 05:18 PM   #2
katiesue1506
Senior Member
 
Join Date: Nov 2006
Mine's inverted. I haven't tried the convex bag yet but the stoma powder and cavilon wipes really help. The cavilon wipes are basically like liquid bandage. I just squeeze the powder on the red angry area (its about 1/8 inch right next to my stoma) and then blow the excess off and then dab with the cavilon barrier wipe. Sometimes I do this two or three times to build up a layer. I haven't completely gotten rid of it yet but its getting better.

Changing the bag more will just irritate the skin more (the constant ripping off of the adhesives). They just need to get you a good barrier... if the cavilon wipes/spray don't work you could try a wafer or paste. I have no experience with these though.
10-27-2012, 05:43 PM   #3
persephone300
Senior Member
 
persephone300's Avatar
 
Join Date: May 2012
Location: wiltshire, United Kingdom
I haven't got any goodies yet so no powder tho I've been using lavender wipes but can't notice a difference to be honest. Ok, i'm heartened a little to know things can be done because I was beginning to panic that the shape of it and the location of the hole were going to be massive issues. Is your hole central? I can't understand how mine is literally at the bottom of my stoma almost looks like it's underneath, which cos of my skin/flab sticking out around it is causing problems. What's a wafer?
10-27-2012, 06:14 PM   #4
katiesue1506
Senior Member
 
Join Date: Nov 2006
They have these little wafer things (also have them in stick form) and its basically like a moldable piece of wax/adhesive stuff that attaches to the skin and can be used to either bulk up the area around the flange or cover a piece of exposed skin. People who have uneven skin and/or folds of skin use it to fill in the gaps. I've considered using a piece of it and molding it as a thin piece of coverage for my skin that gets hit with output. I haven't done this yet because my stoma nurse put a whole thick wafer on me in the hospital around my stoma and it was harder than heck to get off... its super sticky once its stuck to the skin (and works really well with your body heat).

My stoma has a center hole but my mucus fistula has an opening thats at the bottom of it. It does suck, cause everything leaks onto my skin first. I wonder if I could use the powder and barrier stuff around my mucus fistula.
10-27-2012, 06:58 PM   #5
ChristineinDenver
 
ChristineinDenver's Avatar
 
Join Date: Oct 2012
Location: Denver, Colorado
I had lots of issues with leaking bags ~ convex bags finally did the trick, but there was pretty specific prep work to make it happen correctly. Stay positive!! The ostomy nurse put on mine and it leaked within 20 mins....so its not you! First, use the adhesive remover wipes to get all of the glue off, then, spray with the skin protectant. Very important. Apply the powder and blow off excess. Then spray with the sticky adhesive, on you and on the wafer. Use a "ring", it acts like a turtleneck to keep the fluids in the bag and off of you. Apply the bag, press and hold and try to keep still for about 10 minutes. I had the best results with changing the set-up every two-three days. The ostomy nurse said five but I always leaked before that and it left my skin burned and weepy. Call the supply company as they will often give you large free samples to try out the products so that you can see what works for you (and they will let you mail back unused supplies if that particular setup doesnt work).

Hang in there!!
10-27-2012, 07:00 PM   #6
ChristineinDenver
 
ChristineinDenver's Avatar
 
Join Date: Oct 2012
Location: Denver, Colorado
BTW Persephone ~ I just had the same surgery in May 2012. I had a j-pouch built and the bag for six weeks, then takedown surgery. I am happy to share. I felt very lost through the process. There arent a lot of us out there so its hard to find info. Let me know how it goes!
10-28-2012, 02:28 AM   #7
Jaano711
Forum Monitor
 
Jaano711's Avatar
 
Join Date: Apr 2012
Location: South Australia

My Support Groups:
Hi Persephone.
Your stoma sounds similar to my miss piggy. In the beginning she was a lot more inverts but has started heading out as the swelling continues to go down. The opening is at 4o'clock and straight onto the skin. I have had some problems with red bleeding scalded skin. To start with the dansac deep convex with an Eakin seal was great. I use cavillon wipes on area before applying a new appliance and if it is very sore and wet I use a beta dine wipe and gently pat dry before putting cavillon on. I have now changed to a coloplast sensura with a convex. I was told that with the opening into the skin it was important to change every 24 hrs to clean off my skin. Once the seal has leaked the poop will continue to be in contact with the skin and continue to irritate it, so it won't heal. I now like to remove my appliance have a shower and let miss piggy get nice and clean and get some air. I then dry her off gently with a chux cloth, use adhesive remover wipe to ensure skin is completely dry and then add beta dine if needed, pat dry with chux and then apply cavillon to whole area, apply appliance with seal around flange whole. I then apply coloplast brava tape and a belt. Remember it's especially important to measure and get a smaller stoma bag to keep poop off skin. It becomes a bit of an art form over time.
It will get better
Janette
__________________
__________________________________________

: Janette


I meant to have Jano as my user name, but did a typo!
10-28-2012, 03:08 AM   #8
Terriernut
Moderator
 
Terriernut's Avatar
 
Join Date: Dec 2010
Location: United Kingdom

My Support Groups:
I know while you are still swollen from the surgery it is extremely difficult, and leakage is a real problem. The stoma is also shrinking, so double the odds of leaks. Barrier rings are a big help, and I sure hope your stoma nurses bring you some! The cavilon spray and the stoma powder to help protect and heal your skin are also great products.

But them using the excuse of your weight isnt gonna fly with me. The fact of the matter is that the stoma needs to be created properly in the bloody first place! This can be sorted at a later date if needs be. Dont worry, it's not a major proceedure! Meanwhile, a convex bag, barrier rings or paste, cavilon and stoma powder will work. Also, once you are able to take a proper shower, running the water over the skin is very helpful. And your stoma will LOVE a shower!

While you are having these issues bag changes of every day or every other day are a good idea, but not more than once a day. I am assuming that they have given you some adhesive remover?
__________________
Misty
DX Crohns Feb 2011, symtoms 1997, 2009 and then WHAM! Emergency surgery for perforated sigmoid, fistula through fallopian tube, septic and near dead: Colostomy-Stan was born 22/12/10. Another parastomal hernia, his name is Ollie and he is MONSTER size!
4gm Pentasa
6MP 50mg
10-28-2012, 11:10 AM   #9
persephone300
Senior Member
 
persephone300's Avatar
 
Join Date: May 2012
Location: wiltshire, United Kingdom
Thanks for all these comments, I felt a little heartened knowing that there was other advice.

I feel a little disappointed to say that the stoma nurses have not as yet said anything about powder, adhesive wipes, wafers, protectors or anything like that, they just keep trying different bags - I'm on the third at the moment. Luckily, since using the convex I've not had a proper leak - as in down my leg type - which I'm pleased about, but it is still leaking onto the skin underneath the seal a little where it is looking quite burned. I will ask her this week, but maybe the delivery company will send me some stuff when I get my delivery too.

I had a shower yesterday, though very tentatively, and thought would change the bag after, took me ages cos it decided it would spring to life as soon as I had cleaned it everytime!

I just read through all of Michelle's threads and feel so much more heartened by things, have to say her stoma video - looks so completely different to mine, hers sticks out and looks so much more manageable, mine looks like the death star - a circle sunken into a big expanse which is my stomach.
10-28-2012, 07:28 PM   #10
hopeful
Senior Member
 
Join Date: Nov 2010

My Support Groups:
persephone. barrier rings, perhaps with a convex appliance will solve this. Never be surprised the nurses don't know as much as the patients - they lack the personal experience. I find the Salts barrier rings to be the easiest ones to handle.
10-28-2012, 09:00 PM   #11
Susan2
Senior Member
 
Susan2's Avatar
 
Join Date: Dec 2011
Location: Geelong, Victoria, Australia

My Support Groups:
I had a shower yesterday, though very tentatively, and thought would change the bag after, took me ages cos it decided it would spring to life as soon as I had cleaned it everytime!
As your stoma and digestive system settle down, you will probably find some times of the day when your stoma is less active. I eat fairly late at night so my stoma's quietest time is mid-morning; others find that the early morning is best. Fortunately I am retired as it means that I can shower without my stoma bag and without having a lot of output. Many of the people on here with stomas find that a shower with the water just running over their stomas is very healing - stops any itching and helps the skin to repair itself.
10-29-2012, 10:37 AM   #12
persephone300
Senior Member
 
persephone300's Avatar
 
Join Date: May 2012
Location: wiltshire, United Kingdom
Changed my bag again this morning after a shower, it had been on for a day and a half. I noticed the skin was looking worse, quite burned and weepy. Tried to air it as much as poss before drying it well. I even used some baby powder thinking it might help. It's been stinging on and off and so it must've leaked under the seal again. I got my supplies today and only what was ordered by the nurse, bags n lavender wipes. No samples of wafers or powder or anything and i wasn't given any by the stoma nurses. So, any advice in the meantime until I see her wed? I was thinking maybe it would be best to change again if it went on stinging, but it is intermittent, but then that might make it worse. seems to feel worse when I stand up, like lots of pressure pulling things down. I was thinking of just using normal melonin tape the next time I change it, over the burn area and then the bag on top, as I really don't have any other tools. I'm an hour away from the nurses. Really not sure what else to do.
10-29-2012, 10:47 AM   #13
ChristineinDenver
 
ChristineinDenver's Avatar
 
Join Date: Oct 2012
Location: Denver, Colorado
Oh my that sounds painful!!!

Edgepark was the company I used for supplies. It is in America but I would imagine that they have UK customers. They are all so nice and helpful on the phone, their reps really worked with me to find a system that would work! They will send samples too, I usually had them in a day or so. Here is their website https://www.edgepark.com/ and their phone is 888-394-5375
m-f, 8am-9pm est
sat, 9am-3pm est.

i also made sure that when I shaped the opening of the bag that I was super precise on the size, otherwise the fluid would get underneath and poof there would be another leak.

Also, I purchased some panties that made the whole bag set up easier to deal with under clothing. Here is that website http://www.ostomysecrets.com/. ALL of the folks that work there have ostomies so they get it! Ostomy nurses are wonderful people for sure, but until you've had your intestine outside of your belly, well you really can only understand it up to a point!!

I hope it helps!!!
10-29-2012, 10:57 AM   #14
Terriernut
Moderator
 
Terriernut's Avatar
 
Join Date: Dec 2010
Location: United Kingdom

My Support Groups:
Christine brings up a good point, ring your supplier direct. You should ask for salts (to begin with) barrier rings, coloplast stoma powder (contains aloe) and cavillon spray.

With a stoma as inverted as yours is, you should ask them to send samples of convex bags from different manufacturers if possible. But you may have to ring the manufacturers direct.

Also, are you measuring your stoma every time you change? I realize it sounds excessive, but it isnt at this stage.
10-29-2012, 12:27 PM   #15
persephone300
Senior Member
 
persephone300's Avatar
 
Join Date: May 2012
Location: wiltshire, United Kingdom
Haven't measured myself as yet, know they're doing it wed but At the mo i'm really having difficulty seeing it properly, with the trouble bending and being overweight so having to hold bits and pieces to get a good look. I'll definitely ring and try and get bits from the supplier but i'm a bit naive as to how the whole ordering works at the moment and they've not fully explained it. I think I'll just have to use the microtape that I have until I can get something else. Hopefully the nurses will have something wed and then I can order the other bits and bobs I need
10-29-2012, 12:29 PM   #16
Terriernut
Moderator
 
Terriernut's Avatar
 
Join Date: Dec 2010
Location: United Kingdom

My Support Groups:
You can use a mirror to help? If you can, ring the stoma nurses before you see them on Weds so they can be prepared for you.

I do think alot of the issues can be resolved quickly for you, if that helps!

10-29-2012, 12:35 PM   #17
katiesue1506
Senior Member
 
Join Date: Nov 2006
I often forget how helpful the mirror can be. I'll catch myself trying to put on my flange by simply looking down and then I remember the mirror I'm standing in front of can be a great tool. Silly me. I think I've put a couple flanges on askew of the hole because I didn't use the mirror.

I'm with Terriernut here, I think your probs can be fixed once you get your necessary supplies. BTW I posted a thread for you showing a couple pictures of my inverted stoma, you aren't alone!
10-29-2012, 01:04 PM   #18
jenyb62
 
Join Date: Oct 2012
Hi Perse....I had leakage issues as well due to my tummy roll; had ileostomy back in May, emergency surgery due to perforation; the nurse gave me the convex bags that I sized and cut myself; I had horrible skin irritation as well due to the leakage because the bag content is very acidic; once your skin gets that irritated is weaps and causes your bags not to adhere well; the wafers or rings are great, as someone stated, they are a waxy adhesive ring that acts as a flange but it's important that you work on sizing it and placement; also, the stoma powder is a must, especially with your skin in it's present state; you most likely have a fungal infection, as I did, I used antifungal cream, but only a little around the stoma, I would apply and gently dry it and then apply the stoma powder, adhesive ring and then the bag...you can get an antifungal powder from your physician, its called nystatin, until then, just try antifungal cream, again apply it to the skin around the stoma and then pat it dry, but not too much as your bag won't adhere well....I had a wonderful stoma nurse that came to the house; the fungal cream did wonders and healed my skin in a few days. Thankfully I had my reversal a month ago but became very proficient in my stoma care in a short time....Believe me, there were times I just wanted to cry, I would wake up at night and find a major leak, going somewhere was a nightmare and I would pack a bag full of supplies just in case. Also, the products I used were Hollister, even the representative that I spoke to was very helpful and suggested a few things. No worries, you'll get there. Take care.
10-29-2012, 01:09 PM   #19
jenyb62
 
Join Date: Oct 2012
Perse.... Another thing, you mentioned using powder, if anything, try cornstarch, it's natural, no additives and therefore should not sting, just be sure to remove excess so your bags adhesive wont be compromised. I'm not sure how it works in the UK, but the ostomy company I used would ship anything I needed express if it was urgent.
10-30-2012, 12:52 AM   #20
Jaano711
Forum Monitor
 
Jaano711's Avatar
 
Join Date: Apr 2012
Location: South Australia

My Support Groups:
Perse,

I'm so sorry that it is so awful at the moment. My Stoma nurse recommended mercurochrome as it drys really well and should not sting. I had trouble getting a bottle and had the beta dine ( iodine) wipes at hand. They dried the weepy burnt skin well.

Make a list of all the things you want to talk to the Stoma nurse about, make sure you take it with you so the you can refer to it and write note, I do this at all drs appointments to, as sometimes you get info overload and leave having not asked some important questions or having forgotten the answers.

Like Terrinut said, ring the Stoma nurse before hand and ask can she have a range of barriers and bags for you to look at and take home to try. Also ask what she recommends.

It will definitely improve. My Stoma care the easiest part of the operation now that I have found a mix of products that are working well at this size. But miss piggy is shrinking again so next order will be for a smaller size, and then I will have to look for more products that work. I even have a little cupboard for all my supplies, so I know what I have on hand at any time.

http://www.stomawise.co.uk/product-guide

If you go to the above page there is a great deal of info regarding manufacturers and products.

Good luck.
Janette
11-01-2012, 02:31 AM   #21
Jaano711
Forum Monitor
 
Jaano711's Avatar
 
Join Date: Apr 2012
Location: South Australia

My Support Groups:
Hi Perse
Hoping that your meeting with the Stoma nurse helped sort out some of your concerns and issues.
Thinking of you and sending you hope it will all sort it's self out.

Jano xx
11-01-2012, 07:26 AM   #22
persephone300
Senior Member
 
persephone300's Avatar
 
Join Date: May 2012
Location: wiltshire, United Kingdom
Hi thanks for all this.

The stoma nurse has said that I should try and change the bags more often if I'm feeling the sting, she changed it for me, and it was stinging 10 mins after! So, I'm seeing how I go, but will change it more often if it feels really bad like she said.

She also said powder isn't a good idea, but she gave me some rings to try - which look a lot thicker than I was expecting.

I think looking at my stoma, it looks even more sunken, but she says it's poking out more. Dunno. Had quite a restless night, as last night when I went for a wee I looked down and there was a blimming gap in my flange (?), and looked like I caught it just in time before I leaked everywhere, and after changing the bag, was terrified of it doing it again at night
11-01-2012, 07:41 AM   #23
Jaano711
Forum Monitor
 
Jaano711's Avatar
 
Join Date: Apr 2012
Location: South Australia

My Support Groups:
That was me about a month ago. Slept with my hand on it just incase. I now wear a belly band to bed so it doesn't flop around all night.

You will get it working its just a bit of a process.
11-01-2012, 07:49 AM   #24
Terriernut
Moderator
 
Terriernut's Avatar
 
Join Date: Dec 2010
Location: United Kingdom

My Support Groups:
Your stoma nurse doesnt sound very helpful tbh. Have you contacted your supply company for samples of other products, especially the convex flange. That will help your stoma stick out a bit more.

As for barrier rings, they come in different thicknesses. You can also cut it in half and mould it. Some people cut it in half and put it under their stoma...kind of like a push up bra.

But the barrier rings are to protect your skin first and foremost. As for not using powder, if you are using too much and not just on the sore skin, it is difficult for the adhesive to stick.

You should try the convex ones with a belt if you can. The belt will help secure everything. And the belly band are great too.
11-01-2012, 07:52 AM   #25
persephone300
Senior Member
 
persephone300's Avatar
 
Join Date: May 2012
Location: wiltshire, United Kingdom
I think when I order more bags I'll ask for some samples of rings and powders etc.

She tried me with a different wipe too - I had ostoguard and she's tried me with a callo something, which feels a little better I think.

I got more info from her this time. She did try and stick a ring on me, but kinda gave up half way through and said I could experiment at home with them.
I have the convex bags already, but not a belt, and I do have belly bands too - which I've worn when I've gone out a couple of times, but at the minute I feel like I've got my own band constricting round my tummy and back and it just feels too tender to wear them too long, but I do like the extra support and feeling of having another barrier of cloting!
11-01-2012, 02:03 PM   #26
Misty-Eyed
Forum Monitor
 
Misty-Eyed's Avatar
 
Join Date: Feb 2010
Location: United Kingdom

My Support Groups:
I just read through all of Michelle's threads and feel so much more heartened by things, have to say her stoma video - looks so completely different to mine, hers sticks out and looks so much more manageable, mine looks like the death star - a circle sunken into a big expanse which is my stomach.
Glad my thread helped a bit! I do have to say though, even though mine sticks out loads, it still doesn't mean I'm leak free! I actually wear soft convex bags after my stoma nurse started me on convex in general. Seems silly doesn't it, when it sticks out so much! The soft convex is basically like an extra thick base plate so that it takes longer for a leak to happen. If I get a leak, it'll happen in the exact same place though. Plus I had this really horrendous night after my christmas party where I ended up with liquid, red wine output literally all over my co-workers bed, floor and walls at 3am!!! That was before I was using the convex though!

What is the consistency of your output like? I find that leaks happen a lot more often and do the most damage to skin, other materials when it's very runny. I like to keep mine as thick as possible through loperamide.

But yes, I did get VERY lucky with my stoma. I wanted to make sure I had a good one as it's there forever now. Is yours a loop? I think it's more common for loop ones to get hidden away! I really hope you get the leak situation under control though. *hugs!!!*
__________________
Michelle

'You can't change the past but you can ruin the present by worrying about the future.'

Diagnosed with Crohn's colitis aged 9, 1992.

Panproctocolectomy and terminal end ileostomy October 2011.
11-01-2012, 03:25 PM   #27
persephone300
Senior Member
 
persephone300's Avatar
 
Join Date: May 2012
Location: wiltshire, United Kingdom
Today has been quite crappy. The bag has actually leaked 3 times today, not to mention the countless times I feel a sting from where it must be leaking under the seal. It's looking more red, feeling sore and I feel quite down about it and how hopeless it seems to be where the hole is just under the skin. My bf is concerned that it'll start just leaking back inside me it's so sunken. The output is very thick, and I wondered if the pressure and consistency was just pushing away the bag. I don't think it's a loop, but then none of the staff seem to say the same thing. 3 people spoke to me about my reversal. To which I was baffled about, and on inspection of notes, i'm not having one. I'm on my third glass of wine which is prob bad idea but dulling the misery
11-01-2012, 03:39 PM   #28
Terriernut
Moderator
 
Terriernut's Avatar
 
Join Date: Dec 2010
Location: United Kingdom

My Support Groups:
I think perhaps I can see why you'd want to hit the wine, but please stop at the 3 you've had.

Frankly, you need to get in to see the surgeon who did your stoma ASAP. They need a serious slap upside the head! They need to fix this. Also, you need to get on the phone and get some samples of convex wafers...first thing in the morning.

It should not be expected that you have a stoma for long term that is formed like that. But while you are waiting, there are the options we've spoken to you about...make use of them. Dont let it get you down, I know it is difficult. Believe me I do! But it can be resolved!
11-01-2012, 04:27 PM   #29
Nyx
Moderator
 
Nyx's Avatar
 
Join Date: Jan 2010
Location: Barrie, Ontario

My Support Groups:
Here are some numbers and websites for you to contact:

Hollister:
Customer Services freephone: 0800 521377
All Other Departments: 0118 989 5000
Fax: 0118 9775 881

http://www.hollister.com/uk/

Coloplast:
Telephone: 0800 220 622

http://www.coloplast.com/ostomycare/

Convatec:
(Stoma Care) UK: 0800 282 254 or Republic of Ireland: 1800 721 721
(Wound Care) UK: 0800 289 738 or Republic of Ireland: 1800 946 938

Our Customer Care Line Professions are available as follows:
For Stoma Care:
Monday to Friday 9:00 am to 5:00 pm (Excluding bank holidays)

http://www.convatec.co.uk/

Dansac:
Tel.: 01480 484300
Fax: 01480 484340

http://www.dansac.co.uk


Hope this helps...they should all be able to send you free samples.
__________________
Cindy

Crohn's Diagnosis: May 2006
Current meds: none
Surgeries: Colostomy, December 2009

"Never trust a fart." Jack Nicholson, The Bucket List

Oscar is awesome! Loving my life with my stoma (with a hint of poo)!!

11-01-2012, 04:57 PM   #30
persephone300
Senior Member
 
persephone300's Avatar
 
Join Date: May 2012
Location: wiltshire, United Kingdom
I'ring my supplier in the morning and see about the wafers and powder and anything else they can suggest. Also the cavllion wipes, I only got a few from the nurse, and I think they are better than the ostoguard ones I was given before.

I feel quite confused though - if the stoma nurses had said - "something needs to be done about this now", I would've felt better, but they didn't seem to think it would be a problem. And they also said, that the surgeons think that my weight is steroidal, and I should be dropping a few stone now I'm coming off them and all should be fixed - which feels like a lot of pressure! But also time, and it is driving me a little crazy today.

I don't feel like I want to demand them do something about it, as I have no idea if this is fixable with a week or so - i.e it might get better when the swelling reduces etc, and the surgeons should know better than I.

I do have some sticky rings she gave me, and tried to stick one on earlier but had an awful job trying to get it to stick and stay down, so didn't use it in the end. I'll have another go maybe, if this bag comes off.
Reply

Crohn's Disease Forum » Surgery » Stoma Subforum » Inverted stoma - problems with leakage onto surround skin
Thread Tools


All times are GMT -5. The time now is 08:28 PM.
Copyright 2006-2017 Crohnsforum.com