Inverted stoma - problems with leakage onto surround skin

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persephone300

persephone300

Joined
May 7, 2012
Messages
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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.
 
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.
 
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?
 
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.
 
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!!
 
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!
 
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
 
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?
 
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.
 
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.
 
persephone300 said:
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!
Click to expand...
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.
 
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.
 
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!!!
 
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.
 
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
 
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!

:thumleft:
 
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! :)
 
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.
 
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.
 
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
 
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
 
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 :(
 
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.
 
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.
 
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!
 
persephone300 said:
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.
Click to expand...

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!!!*
 
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
 
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!
 
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.
 
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.
 
Something must be wrong if the bag just keeps falling off like that.

The wipes you are using, is your skin still damp when you put the bag on?

As for an inverted becoming soooo much better after the weight and swelling go down...it may get slightly better, but I dont believe it will become an 'outtie'. And surgeons dont ever want to admit they made a mistake. It is also up to the stoma nurses to bring these things to the Dr's and surgeons attention! And frankly your stoma nurse doesnt seem very pro active.
 
No, skin isn't damp, but where the burn is, I'm not sure the bag sticks properly there, I can feel it sting a few minutes after I stuck it on, and I think it's more to do with the shape maybe of the area.

I dunno.

I'll ring the nurses tomorrow and see what else they suggest, short of me going back in there for another hour journey when I can't drive there :|
 
Feeling very down the last couple of days. I've only managed to properly change one bag in about 4 days, the rest have leaked and I've had to change them, and the times have varied from 2 hours to 12 hours, but all have leaked.
I just can't get the bag to stick around my stoma anymore, the skin is too weepy and sore. Family keep suggesting I "let the air get to it" - but come on how practical is that???? And how long would it take??

I can't explain why this one's been on since 6.30am, but the output is more liquid, and I'm wondering whether it is that. When it is thicker, it seems to smoosh under the bag and eventually the bags seal gives way.

Seeing stoma nurse on Tuesday for more suggestions. She said to me that the surgeon had said there would be no way to realign the stoma so close to the op -that I'd have to heal and mend etc etc, and it could take quite a while.

Got some free samples, some cream and powder and different wipes and a seal. The seal won't stick to my skin now - I've got more coming. I've tried the cream and powder the last few times, and can't decide if they help or not to be honest, I suppose I sting less.

Feeling wite hopeless about it though - don't want to go anywhere for fear of it leaking when I'm out. I can't sleep properly, everytime I wake up I've sprung another leak, so I have trouble getting and staying asleep. ATM feels like a massive mistake, and I'm really not sure how it can be corrected.
 
which seals did you get? For the weeping skin, read up on the crusting method. Use a blow dryer on cold setting to make sure no loose powder is left on skin. Use a SALTS seal, and after you apply the bag, press around the seal area for a couple of minutes.

went through what you went through and sorted it out. Without too much thanks to stoma nurses.
 
The powder is supposed to be very good for weepy skin. Like hopeful said, you put it on and spray off the excess. After that I dab Cavilon barrier liquid on it, then I repeat two or three times to create a seal. Once its dried up you should be able to apply the bags.

I also wonder if maybe you would benefit from a two piece bag. I don't remember what you are using but with a two piece system, it allows you to take more care in applying the flange part, and making sure its sealing correctly. It also allows you to see the area better.

The other day I tried to apply a one piece and I couldn't even figure it out, I just threw it away and went back to the two piece.

I also heard the Sensura Mio is better for adhering to curves in the body. I don't use Coloplast, I use Hollister but Coloplast has a cool quiz you can take that will suggest products for you. Here's the linky: http://www.coloplast.com/products/ostomy/bodycheck/

Unfortunately you do have to take charge and fix things yourself... my stoma nurse was non existent after she taught me to change the bag in the hospital. I even requested her on day 8 and she never showed up. So my mom and I had to change the bag alone and I pooped all over myself and it was horrible. But I learned. You kinda have to contact the companies and see what they will give you to try out (most places will let you request samples online)... they have very knowledgeable staff that can even suggest ways for you to fix any problems you are having (most companies also call back to make sure everything is going okay with their products). My suggestion is to just make friends with your Coloplast, Hollister, and Convatec representatives. They truly can and want to help.
 
Thanks for this guys, I tried some Bravo powder which stung like hell. I tried a coloplast sheet which I cut to shape and that didn't stick. Tried an oakwood ring, which stuck, but was too thick and difficult to use, I've got more seals coming in the post. Tried layering up with a barrier cream and cavlon wipes, used my fan as I don't have a cold setting on hairdryer. This one has stayed on now for almost 12 hours and I have no clue why when the others were failing. It's still stinging, so must be leaking, only a matter of time before comes off.

I'll try and keep my chin up but I just feel like it's a brick wall at the moment, so unpredictable. I'll ask about the different bags, but this one had been working to an extent before - in that it wasn't properly leaking.
 
Also, re: stoma nurses....Mine was almost useless after my op. She only came out to see me twice and that was it. I took my appliance needs into my own hands. I found all the reps at the various companies very helpful and knowledgeable. Give them a call and get them to try and sort you out...it doesn't sound like your nurse is doing a very good job.
 
Hi Perse
Hang in there. These trials are sent to test you. Ring the reps see what they have to offer. Just remember you are not alone. It will all come together even though it feels hopeless at the moment. This will be a small blip on the radar. Just breath and take each success as a bonus and a step towards getting a bag to stick.

I always hug my Stoma as soon as I have applied a new appliance. Apply the appliance then press in around the edge of the rim to form a seal them using the palm of your hand just place your palm firmly over Stoma and adhesive area to gently warm adhesive and hold it in place. You have got to try everything and as the skin heals keep trying until something works and makes you feel confident.

As I said hang in there you will get it all sorted.
Janette xxx
 
Be noisy about it! I think we, especially women, are
"Good" compliant patients. We don't convey the level of pain involved with our condition and then something deteriorates and a doctor finally says "Wow, this is bad" and then you get help. But often it has gotten quite bad. Speak up now. My output vas very liquid, and since the reversal it still is and is causing burns on my bottom. I've decided to be the squeaky wheel, because I don't think I will find relief unless I do.
 
Feeling very depressed the last couple of days.

In part this is because of coming off the pred, and it's making me have loads of side effects from confusion, to emotion, to not knowing where I am, forgetting things, feeling surreal etc etc.

Partly cos I feel like I've made a massive mistake in getting the surgery. My burn still won't heal. The stoma nurse encouraged me to sit at home with the bag off to "air" the burns which should help, so I've spent the days in the week doing that. I felt it was looking a little better, but still badly burnt, then yesterday when I was doing it, I had a really bad case of liquid output, so bad, that I couldn;t mop it up fast enough, it was coming out so fast and so much, I covered eveything, and I was panicking, I didn't know what to do, couldn't get a bag back on and elt very overwhelmed.

Now, I just have visions of not only the liquid poo running all down me and everywhere else, but also the thicker stringy stuff that I've had all week - and having to basically pull it out when it gets stuck half way through - both of which have really icked me out and feel burnt into my memory and that has made me think - my god - I have this for the rest of my life.

I know it's only been 3 weeks, but I thought I'd made my peace and was adjusting. Maybe I'd feel better if my stoma area wasn't so sore and stingy all the time. The burns just don't want to heal, and the thought of "airing" it, now puts me off more than ever.
 
I'm so sorry you are having all these problems. Truly, they need to fix your stoma if at all possible. A permanent inverted stoma is not in your best interests, and I would like to personally smack your surgeon. AND your stoma nurse!

If you are going to 'air out' your stoma, you need to be sitting with a bowl under it. It is doable, but only with precautions. Also, have you been showering with no bag? The warm water is very healing.

What gear have you requested from the suppliers? We started a thread with all the numbers to ring for you.
 
Hi - I too was very leaky but switched to paste with a convex bag and yes I still leak but not as often - I'm averaging 2 days between changes. The paste kind of settles where it's needed so is great for inverted stomas and creases.

I get disposable bed pads from my supplier (bullens) and I cut them into strips and wrap them around me waist and tuck them into my belt to stop leaks being so lethal in the night!

I need convex flanges and a tight belt to stand any chance of no leaks and also lots of adhesive paste to stop the leaks - my output is mainly watery despite 16 Imodium a day!

Kermit has been itching all day so I should have changed him but I ignored it so when it leaked all down my leg it was my own fault! Itching or soreness is a sign of a leak and needs a full change.

You have all my sympathy as it is horrible waiting for the leak

Xx
 
Thanks for your post. The problem I have is when I was in hospital I was given flat bags, as was told stoma too new for convex so by time I left and they gave me the convex ones, I had a large burn on my skin. The bags don't stick to it, despite my best efforts with powder, barrier wipes, a hairdryer etc, tho it's getting a bit better I think. So, I leak every day under the seal and when my output gets a bit thick It busts through and I completely leak. It stings every ten minutes, even after a new bag. I just can't find a solution until the burn is healed and even then my hole is so near my skin. Output has to physically go up and over to get out. I worry about lying down so I never sleep well anymore. My stoma seems to be shrinking and becoming more inverted too. I just can't imagine living thru life with this, even going back to work. The nurse tole me the surgeon would want a year or so before contemplating altering it.
 
This was totally my problem! What worked for me was making a crust around the stoma using a no sting barrier spray and powder. I cut my wafer a littler bigger to let the leakage stream into the bag so my raw area was there but wasn't so bad and way smaller area. I got tons of relief doing this.
 
That Dr.sounds like a quack.I know for a fact it will always leak no matter what your weight is.The exact same thing happened to me and I had to have a second colostomy surgery where they had to close the first one and do a second one a few inches down,and as you well know this surgery is very painful,so having 2 of them very close together is no fun but very important to have done.Good luck.
 
What may help you heal is using cimetidine or ranitidine (Zantac) - they use that in some hospitals immediately after surgery to reduce the aciditiy of stoma output so that it has a chance to heal
 
Persephone, have you tried using a deep convexity bag? I find that the ordinary convex ones leak, but I get much better results from a deep one. Not all of the manufacturers make these; mine are Coloplast Alterna 14175 Convexity (Deep), but you will need to find out what is available from the suppliers in the UK. You can search on the web or ring them.
 
Hi Pers
Sorry to hear you are still having problems. Just a thought, Holister do a convex seal, I was using this for a while until I found a system where the convexity was perfect. Try holister and see if you can get a sample.

Hope that it starts to sort out for you.
 
Hi ladies, thanks for your replies.

Things had been much improving. I started using an ostoseal powder and building up a crust with the cavlon and then the ostowipes when I ran out of those. Things were progressing the main leaks had stopped so it was just figuring out how to stop it leaking under the seal.

I got down to changing the bag twice a day and new skin has started to grow on the burns finally and finally there was less stinging during the day and things felt more normal. Then I started trying to change the bag once a day and I was getting there...

I was given a couple of different convex bags to try, and haven't as yet as things were going so well.

I'm appalled to report that yesterday it stang quite a bit, but I was determined to try and make it through the once a day, when I got it off this morning, not only was the existing burn looking quite badm but I have now got another burn all around the outside of the healed skin!! It is sooo sore. I changed it this evening too, and it's just looking awful, I have no idea why it has regressed so, and I'm very down about it. Especially as I'm going back to work next week, it needs to heal, and continue healing.

I'm trying to go back to the twice a day changes and see if it helps.

I'm convinced though that y body is just the wrong shape for the bag, and also the others I've been given. It's like I can't get the bag to stick underneath my stoma - where the burn is - because it really isn't flat - even with the convex bag.

Going to have to try seals etc again - because I really don't think the bag isnt sticking because of the burn anymore. As much as I try and stick it down t the bottom and the top, there's a half inch gap underneath the bottom, when it fits the top. They are quite flexible bags, so they should fit - they're the peak ileomate convex drainables.
 
Sorry to hear.

1. When you feel it burn, don't wait - change immediately.

2. Convatec has some type of synthetic skin strips - hydrocolloid based - I used that on top of my burns till they healed.

Don't forget the Zantac till you sort all this out. It will minimize the burns.
 
:heart: You will get there! I understand very well. Because I have such a HUGE parastomal hernia, it's causing all sorts of issues. Well, it's like wrapping a football. You just have to keep trying until you get the right kit. And if it takes twice a day changing, keep at it.

You are doing so well, and are sooo strong! Keep at it lovely lady, you will get there!

(still think your surgeon should be shot in the bullocks and before that make you a proper stoma with a spout!)
 
Hi Perse
Nice to see you back, but sorry it's for all the wron reasons. Firstly I just want to say........OUCH. I think it is important that if it is stinging then change it, there's no point trying to hold out for 24 hrs if it set you back.

I am so sorry that this has been so awfull, you are a wonderful strong person. You need to just persevere and it will eventually come good.

I'm with Terrienut, your surgeon needs to be hang drawn and quartered. First though he needs to fix you Stoma.

You are doing great all things considered. Keep crusting over the burn and cross those fingers.

:hang: janette
 
Hi Perse
I was wondering if you have been following Fruitloops thread; Skin is so sore and blistered, it is in the Stoma sub forum.
She uses sudocream on her skin, to soothe and heal the skin. She describes how she does it. Maybe this would be helpful for you and your predicament.

Thought it was worth a mention.

Janettexx
 
Hi Ladies, thanks for your comments.

Hopeful what are the strips like? And I'm not sure what Zantec is.

The surgeon has told the stoma nurses apparently that corrective surgery couldn't be considered for a year. The nurses tell me that my stoma is under s much pressure being put through loads of layers of flesh because of my weight which is making it more difficult, and that when I lose weight it will look completely different and be easier to manage (no pressure!).

I tried various seals last night when I changed it, but to no avail, some were too thick though advertised as thin, most stuck to my fingers more than my belly, but I think they are protesting at the funnel shape which is created around my stoma. I'm not sure how to get the bags to stick to that shape.

Trouble with the stinging is that it stings every few minutes - when it outputs or so - so I can't possibly change it every time, it's just trying to find a balance between how stingy it is, which I thought I was doing and it was getting so much better. I changed it again this morning and altho it looked just as bad, it felt slightly better to the touch, so fingers crossed I can get the new burn under control quickly
 
Have you tried warming/heating the flange of the stoma bag (with the protective cover still on) with a hair dryer? This makes the flange much more flexible and able to be moulded to your shape, as well as making it stickier. I always do this and also use the hairdryer (on a lower setting) to make sure that my skin is thoroughly dry.
 
I have trouble with skin burning - I have just switched to Eakins paste as it doesn't sting. When mine was really bad in hospital they used a wafer underneath the flange?

I would try the sudocrem too - wipe it on and gently rub, then wipe off excess checking that skin isn't slimy, then spray barrier spray on.

Do you use a belt? Could you try putting paste around the edge of the stoma so any output misses the skin?

I've just got some samples of salts dermacol which is a weird looking thing that resembles a mini condom! It goes over the stoma and kind of hugs the stoma to stop output dribbling down the sides?
 
I am so sorry to hear the skin broke down again.

Good advice from Susan2 though. It is vitally important to make sure the skin around the stoma is absolutely dry before re-applying the base plate. The best way to do this is with a hair dryer. And you can feel with the back of your hand if the skin is still damp. You will be surprised how long it takes to dry.

After drying, what about using convatec stomadhesive paste around the base of the stoma, and wait a minute, then apply the base plate. It would help even the skin and create a smooth surface to work with.

http://www.convatec.com/en/cvtus-pr...ml?franchise=46&typesearch=187&proddett=2391#
 
Hi guys, I feel a little beside myself at the moment, last bag lasted 6 hours before the leaks started hurting like mad so I had to change it, but now I'm on my last bag - there was a cock up with my delivery and it's due tomorrow, but god knows when, which is quite upsetting - and trying to explain to them that I'm using more than one a day is troublesome.

I understand what you're saying about putting things on the base of my stoma, but it really is quite difficult to explain - there really isn't a base of my stoma, cos my stoma is indented, and basically where it is stitched in if you like - in to my stomach - that's where the output comes from. So it comes from the edge, which is more sunk in then my skin.

I try and make sure my skin is really dry and the powder really helps that, I just tried one of the otherbags I've been given to test, a deeper convexity, but the liquid output went straight under that - it doesn't fit to stick. Still can't work ut how to get my usual one to fit to stick at the bottom either.

My skin is even, it's just the fat around the stoma isn't. I'm not a negative person but I really a struggling with all this.
 
yeah - it's been stinging all evening, and there's nothing I can do about it.

It's a worry that it'll only make all the burns worse. I have no idea when I'll get the other bags tomorrow
 
This is going to sound really weird...but think like McGyver! (are you old enough to remember him?) All else fails, make a homemade bag!

Take a big freezer bag, use surgical tape around it. Or hell, use duct tape if you have to!
 
prob not the best to sleep in but you're right, if I get desperate, maybe I'll have to do that in the morning, might be able to prevent the leaks better that way even!!
 
Tape the whole thing all the way around. (I've actually had to do this myself)

It wont last all day, but by gosh it may be enough to get you through.
 
Hi Janette, they're coming today apparently.

I used another bag last night that the nurses had given me to try, a deeper convexity and very inflexible. It was quite rubbish, wouldnt fit the crevice where my stoma is - I'll post pictures later of the stoma, trying to get them emailed - needless to say, I woke up covered in poo this morning!

I was in a good routine with the other bags, had changed them 3 - 4 times a day when they were leaking badly, but when it started healing up, got down to 2 times and was getting to once a day, going to have to start more again when they come.

It's my docs that keep holding up the prescription for some reason. I think they're unfamiliar with the procedure for delivery/ordering etc.

No, didn't try the freezer bags, my little brain just couldnt work out how I'd attach it to myself, but protect the skin around the stoma. You'll hopeully see what I mean later.
 
Here they are - my pics of my stoma - WARNING...

First pic is the view I get of my stoma...

picture.php


and the other pic is my stoma when I push it up to see it...

picture.php


...You should be able to see the red burns, and the dark patch at the bottom of the stoma is where it outputs from...
 
All I can say is that I can now understand why you are having such problems, you poor girl. That seems most unsatisfactory. What does your gastroenterologist feel about it?

I'll be very interested to hear what other Forum members have to say, now that they can see what the situation is. :hug:
 
The gastro just says its down to the stoma nurses to sort out. The stoma nurses say I need to lose weight and all will be better - but that takes time of course. I've yet to see the surgeon again and am still waiting.

I've got these seals that are supposed to be used on the outside of the flange to help stick it to your body - the nurse gave me them when she saw me using microporous tape, the last 2 bag changes, I've attempted to place them underneath the bag/flange, over most of the burns, because they have aloe in and are very slim and seem to suit the curves better. I'm hoping that will make a bit of difference, I think it did the last bag.

It just seems to be very difficult getting it to stick at the bottom when it fits at the top and around. In a bad crevice I suppose and the more I move, the more it becomes unstuck
 
I don't blame you for feeling frustrated. I understand now about how your stoma does not have a base to it. I don't have any experience with inverted stomas, but did a little search and found this discussion for you:

https://www.c3life.com/ostomy/forum/Topic10880-22-1.aspx

Perhaps the Convatec Eakin barrier ring they talk about (cut in half and then rolled to form around the flange) might help you.

Did the delivery arrive yet? Do you have other samples that can tide you over until it gets there. Over here, when there are delivery problems, you can go to a medical supply store and buy some supplies. These stores can normally be found near all the hospitals.

It is good that you are using the powder to dry, but I have found that when you use the powder, then the barrier spray, and repeat a couple of times to build a protective layer on your skin, it will take a while to dry the area completely with a hairdryer - longer than you think.

I really hope you get this all sorted out - I feel so bad for you! All I can say it that one day you will look back at this from a much better place, and marvel at how strong you were to go through all you did. Hang in there!
 
:ymad::mad2: That stoma is completely, totally, unacceptable! You need an appt with the surgeon immediately. And if they say wait a year, you tell them you are filing a complaint, and then promptly DO it. And I would ask to see another colorectal surgeon.

There is no excuse for this. You dont have to live like that.
 
Im with Terriernut. There isnt a stoma!! I feel for you going through all of this. It is painful and frustrating to have leaks but you poor thing I am sure you are completely exhausted. And it is hard because none of us have had experience with stomas so we dont know whats normal, what to expect, etc. Yes, call the surgeon, go to the Emergency room, scream from the top of your lungs. No stoma nurse will be able to sort out what was done incorrectly to start.
 
That is totally unacceptable :(

With my first stoma it was causing problems as it was next to a huge open abdo wound and the surgeon suggested re-siting it whilst I was about 1 month post op so making you wait a year is outrageous!

As for losing weight trust me stomas aren't just for skinny people! And from the photo you'd need to be skeletal before that stoma popped out!

If you can I'd get admitted and stay there till they make it into a stoma because to me that's not a stoma!

Clare
X
 
I agree with all of the above. The surgeon screwed up and should have pulled it out further. You have an opening, but no way at all for it to empty properly. THIS IS NOT YOUR FAULT and nothing is going to change until a surgeon corrects it!

Oh, you poor thing!!!!!!!!!
 
HI Perse,
I am with all of the above. You need to get the surgeon to fix it and soon.

None of this is your fault or has anything to do with your weight, it is just a very poorly made attempt at a stoma.
 
I really don't know what to think. The stoma nurses say I have to make the best of a bad job. They said the surgeon told them he had difficulty pulling it out any couldnt any more but when I lose weight there will be a difference, the steroids having put on weight and caused problems.

I don't want to make a fuss, and things were getting better, but one bad day of stinging, has blown all the progress out of the water. It IS so frustrating. I'm still waiting or my surgeon appointment, and not sure I can speak with him via telephone, but I will certainly try I think.

I've also mentioned to the nurses about this forum and they all seem horrified about it saying they were the ones with lots of professional experience, having seen lots of bad stomas and mine really wasn't that bad.
 
Bloody stoma nurses. Do they have a stoma? is it imperitive to them that you are able to get on and function? do they have to deal with the pain of burning skin? Do they have to live with the fear of being covered in shit if their appliance does not work?

How dare they. Sorry. but these same nurses probably see alot of shonky stomas from the surgeon who did yours. they will be protecting their surgeon. You need to plead your case. Im sorry but you needing to losing weight should not be his reason not fix his mistake. He was happy enough to do the surgery in the first place.

I do not understsand the UK health system well enough, but if it was me here in Australia i would ask my gastro who he would recomend for corrective surgery, and then see if he can get you into them.

keep pushing Perse, you are the one who has to deal with a crappy stoma on a daily basis.

Much love and support
Janette
 
Agreed Perse, I am also guilty of not wanting to make a fuss but you cannot function in daily activities with this botched operation. If you were in America I would say keep complaining and get to an emergency room right away. Any ER doc will flag what's been done to you as unacceptable. My gosh, how can that doc even expect that you'll be able to exercise to lose the steroid weight anyway? You have a gaping open hole in your abdomen for goodness sakes. And the stoma nurses ~ yes, they are helpful to a degree but they are NOT living with a botched stoma and do not have acid stool on their skin daily causing ulcers and possibly infections. If you have an ER go, first thing and get evaluated by a third party who will fix you properly.
 
Might it not be true? That he really couldn't pull it out any further?

They've said that it is being pulled back in through lots of layers of flesh, tension and all.

I'm not an expert and he is - if he says there's really nothing he could do should I not trust that? He is the chief of surgical team too and I kind of trusted him. I'm left with minimal scarring etc, and I felt looked after on the whole.
 
Honey whatever he did I am sure he thought it would hold up, but the fact is it hasnt. Many overweight people have stomas and they poke through enough so their flesh isnt burned. Really, at this point it makes no difference if he did it right at first, its not working now and MUST be fixed. I am very worried for your ongoing health. Be the squeaky wheel. Im praying for you to have strength and a loud voice in this!
Christine
 
There was someone over a year ago who had terrible leaks and eventually convinced their surgeon to do liposuction just around the stoma so that it was more flat. She had great success with this.
 
WOW 2thfairy

That sounds amazing. I wonder how she ended up getting on. It would be really interesting in finding out if they have written it up in a medical journal. I not sure how correct this is, but i remember hearing that fat will not redeposit in an area that has had liposuction?? Does anyone know if that is true?
 
persephone300 said:
Might it not be true? That he really couldn't pull it out any further?

They've said that it is being pulled back in through lots of layers of flesh, tension and all.

I'm not an expert and he is - if he says there's really nothing he could do should I not trust that? He is the chief of surgical team too and I kind of trusted him. I'm left with minimal scarring etc, and I felt looked after on the whole.
Click to expand...

Perse...you have two options. The one you are living with now, if you call that living. Or to make some noise and have it corrected. If you think you can live with it, it is your choice. But consider this...how are you going to be able to leave the house, have a social life, work, etc like it is? Dr's and nurses will cover for each other.

And by the way, my stoma nurses peek in this subforum and think it's brilliant.

If you think you can't live like this, then you need a second opinion at the very least is you are uncertain the other surgeon cant correct it. Personally, I couldnt live with an inverted stoma. Not even if it was temporary. But yours is supposed to be permanent isnt it? So you are basically being told that you are stuck with this mess and tough if you dont like it? Really? In reading all your posts since the surgery most of us dont think too much of your stoma nurses and they arent doing much to help. Dont you think perhaps a second opinion from a reputable colorectal surgeon would be in your best interests? Same goes for stoma nurses. You are NOT tied to the hospital you went to under NHS rules.

Emails and pictures to another surgeon and other stoma nurses will perhaps assist you in getting further help from a different hospital. But honestly I urge you to not take no for an answer in getting this rectified.
 
persephone300 said:
I really don't know what to think. The stoma nurses say I have to make the best of a bad job. They said the surgeon told them he had difficulty pulling it out any couldnt any more but when I lose weight there will be a difference, the steroids having put on weight and caused problems...

...I've also mentioned to the nurses about this forum and they all seem horrified about it saying they were the ones with lots of professional experience, having seen lots of bad stomas and mine really wasn't that bad.
Click to expand...
Sorry, but that's just nonsense. It would be interesting to see there reactions if it was their daughters with a stoma like yours. How can you make the "best of a bad job" when you can't even get a stoma bag to stick on?

And the stoma nurses might have the theory, but the ostomates on here have the practical experience.

I know that you don't want to make a fuss, but you have no quality of life and that was what the operation was supposed to give you. Can you make an appointment with your stoma nurse and ask her to show you how to put the bag on so that it will stick? That might make the problems more obvious.

I'm just grasping for ideas now as it doesn't sound as though you are getting any support either from the stoma nurses or from your GI.

BTW, my GP thinks this site is great, too.
 
Thanks again ladies.

Although my partner is very supportive with the whole colectomy etc, he seems to be siding with the nurses - saying that they have experience with lots of stomas, whereas the forum people only have experience with theirs. I can see their points but still, those with real experience I think are more valuable - which is why I joined the forum in the first place.

After another difficult and emotional night, I decided to write a heartfelt letter with the pics to my surgeon and send them in to him to see what is going on, why would I need to wait, what was the reason behind the inverted stoma, basically, begging for him to make some suggestions or give me some hope.

Otherwise, you're right, I may seek another opinion from a different hospital, which would take time down here. I'm hoping when he sees the recent pics however he'll re-appraise what he can do for me.

Thanks for your endless support which gives me a lot of perspective on things.
 
Oh Persephone

I just wish you weren't going through all this. It's not fair, and it probably seems like just too much.

What with your Stoma bing so high maintainence I bt you are just exhausted. Perspective is a good thing. But just remember if you took your car into get fixed and it wasn't usable afterwards. Lets say it was sort of ok but not very reliable, what would you do next.

Good luck with your surgeon

Janette
 
I would say if yours is not meant to be temporary to see what they can do with the positioning of it.

I also want to say that I was told the same thing with my ileostomy surgery in regards to the bowels being pulled to the surface and such. I know everyone else is all "witch hunt!!! kill the doc!!!" But I heard the same thing as you. I was told that everything depends on how mobile the bowels are, and how well they can pull it to the surface without creating tension. Tension in the bowels can cause other big huge problems.

This being said, I think its definitely worth talking with the doc and seeing what options are available for you. At least have him entertain the idea of a redo... if that doesn't work then I would cause a stink with the stoma nurses.... MAKE them HELP you. :) Its their job.

I think you writing a letter with pics is a step in the right direction.
 
Hi my stoma is quite inverted most of the time and have great trouble with leakage. My stoma nurse has tried all kinds of bags and am currently using convex bags, after trying other bags with a hard back to try and keep my stoma out, I also wear a belt but to no avail :( I don't sleep properly as I get leaks in the night as well. I sleep sitting up as if I lay down I wake up in a bit of a mess if I have a leak. I am so tired as haven't slept properly in months.
I don't eat after a certain time to try and ease the output but it makes no difference at all :(
I had to change 7 times yesterday due to leakage. My output is very watery which is when I get the main leaks, I have been prescribed loperamide 2mg which I take 2 at a time 4 times a day to try and firm up my output but it makes no difference I still get leaks, and my output is still watery. Rarely is it thick. My skin around the stoma is very angry and sore, and I use cavilion cream as a barrier. My stoma op for a reversal should in March sometime fingers crossed as had the op in september and was told it would be for 6 months then the reversal.Any suggestions would be of great help and appreciated. Thankyou
 
As little immodium as you are taking probably wont do the trick to slow your output down. You will most likely need to try psyllium husk, bananas, oatmeal and other things to thicken your output up, at least a bit.

Are you using a one piece or two piece appliance? Which appliance has worked the best for you?
 
Oh I really feel for you, it's so difficult to get on with life when you're worried about leaking.
Have you tried absorbagel sachets in your bag? I get pretty watery output most of the time and have found them brilliant.
http://www.opus-healthcare.co.uk/absorbagel.php
When it is really watery I sometimes push one up by my stoma to catch the output and turn it into gel as soon as possible.
 
hiya I am using a one piece appliance haven't tried a two piece, to be honest I don't know what a two piece is?? I haven't used the absorbagel gel but will speak to my stoma nurse when she is back off her holiday. Do you just put it in your bag??
I have tried eating food that supposedly thickens up the output eg bananas, ready sallted crisps but again to no avail.
Thankyou so much for your advice guys :)
 
The pysillium husk capsules I take are about the only thing that has thickened up my output. It comes in powder or capsules. You can get it on amazon or at the health food store.

For sore skin due to leaks I use stoma powder. And to help with the sore skin and avoid getting more mess on it I use rings...from Coloplast. However most appliance manufacturers have rings, Salts, Hollister, etc.

As for two piece appliances, they are worth a try. But only after you get the hang of things.

Have you rung the manufacturers direct for some help?
 
Hiya yes I spoke to the manufacturer and they are sending me a ring that apparently moulds around my stoma still waiting for that to arrive. can you explain what a two piece appliance is please?
 
Sure can. I use Coloplast Sensura Flex. I do recommend Coloplast products. It has a large base plate which you put on first. The bag bit is separate. I can easily remove the bag and change in a matter of seconds. The base plate stays on. I can go from 3 to 7 days with the same base plate, even with lose output. There is a thread at the top of this subforum with web sites and phone numbers of alot of the manufacturers, and you should have a 'nose' at their products.

I also tend to remove the whole lot on changing day and jump in the shower. I find 'Stan' loves a good shower, and it helps my sore skin.
 
I use the coloplast sensura two piece bags and swear by the orahesive powder for sore skin.
I just pop a couple of the absorbagel sachets in my bag and they turn all my output to gel! They're brilliant.
 

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