Leaks leaks and then some more leaks

[shazz]

Have been using the coloplast bag with the mouldable seals.
It was going very well until yesterday and last night.
My stitches have pulled away form the top right of my stoma which has caused it to droop downwards. The output now comes out straight downwards. This is causing me no end of problems.
The mouldable rings just wont stick to the underside of my stoma. My wonderful hubby, bless him, has been helping me to size everything up and mould the rings to fit. We make sure no skin is visible and then put the ring on. We then put the bag on, bottom first, and i sit there for a good 5 minutes to make sure the seal is holding.
I changed it with my stoma nurse on Thursday at 11.50. The next time i had a leak was midday on Friday. So we changed it again. Then I had to change it again at 22.50 because it was starting tto go again. Then I woke up at 4am this morning with a huge leak all over everything. So changed it again. Then again at 6am this morning. My skin is red raw and bleeding around the stoma. Am using the powder stuff and making sure its well washed and dried each time.
Of course it would happen on the weekend when there is no support available. I do luckily have a lot of supplies and am trying different bags(salts I am allergic to) and different rings and such. Have tried 3 different makes of bags and 5 different rings.
Am at my wits end! So bloody tired!
Thanks in advance for any words of advice.

 

[bigtruck]

Don't know about advice but I can sympathise I've been up all night with the same problem, my output is pure water and as you say no help at weekends! Hope u get sorted soon. Ryan.

 

[kossy]

I have a few questions.
Do you use a No Sting Skin Prep Protective Wipe or spray? I personally like the spray. It will seal in the powder, save your skin from any stoma discharge.
When you wash the skin around the stoma what type of soap do you use? Make sure the soap doesn't contain lotion in it.
Do you use an ostomy belt? I use one, it helps the wear time of the bag.
I would also suggest using stoma paste around the opening of your ostomy. To me, I find it turtle neck around the stoma better then the ring.
Oh and you might do better with a convex wafer.

Best of luck to you. I hope you're able to find a solution soon.

 

[shazz]

Thanks Ryan.
Hope you get yours sorted soon as well.
I have been eating toasted crumpets with smooth peanut butter and that has thickened up my output a lot! Also trying to eat every few hours. Not been easy because i have no appetite but i am trying.
Might be worth a try, if you like those things!
Sending you hugs hun.
Xxxxxxxxxxxxx

 

[shazz]

Thanks Ron.
Don't use soap around my stoma or on my tummy at all. I use an adhesive remover wipe to make sure I get all the adhesive off.
I don't use any sprays or lotions of any kind as I have really sensitive skin. I used one of the salts bags with aloe vera in it. The ones endorsed by the british skin foundation and it made my skin blister within 90 minutes!
I use the stoma powder to help the stoma skin heal but that's it.
I will ask for a convex wafer on Monday when my stoma team are back in their office.
I am only day 16 post op so am so very new to this. But coping well, I think!
Thanks for your advice.
Xxxxxxxxxxxxx

 

[Misty-Eyed]

Have you also been using loperamide/imodium to thicken your output? Mine is much less likely to leak when it's thick, and when it does it's not so messy.

Secondly, my stoma nurse also mentioned convex wafers even though my stoma sticks out a lot. I found a happy medium with the dansac X3 wafers as they are 3m thick around the stoma and so are effectively like a built in ring.

I don't have much experience with bad skin (luckily) but you could also speak to your stoma nurse about these;
http://www.saltsstomacare.co.uk/products/dermacol.aspx
I know you said you were allergic to salts, but not sure if this is made out of the same stuff as their other products.

Hope the problem gets better soon!

 

[shazz]

Thanks Michelle.
I have been taking loperimide liquid as it gets absorbed easier. I take it about 30 minutes before I eat. Plus stated eating lots of stodgy food as well.
Thanks for info on the collar. Will ask about that. My stoma is not round its oval and doesn't sit upright it leans downwards so don't know if that would affect it.
Can't hurt to ask about it though.
Xxxxxxxxxxxxx

 

[shazz]

And another one bites the dust!
We have come to the conclusion that the washer bits are not sticking to my skin properly because it is not flat and lovely and perfect! This then makes the bag leak. And so and so on.
Have tried to gently lift my stoma up while my hubby puts the washer on. Will see how long this one lasts.
I am so lucky that my husband is not squeamish and doesn't mind helping his wife when she is covered in poo!!

 

[glum chump]

Oh, Shazz, what a pain! One thing to keep in mind is that sometimes, after surgery, our skin changes a bit for a while. So mine went the opposite way of yours, where bandages would just cling to my skin and we had the worst time trying to get things off. Perhaps your skin has gone in the opposite direction, which my ET nurse says is quite common. After a while, my skin returned to 'normal,' but it was trying for the first little while.

My stoma also isn't perfectly round, and my skin/belly is in no way smooth or flat, and very far from perfect! My stoma droops downwards and is a left-leaner. All this shouldn't (technically) affect where the output goes. However, I've noticed that anytime i have a blowout, it's on the left side, close to my bellybutton. I make sure that my seal is a bit thicker on that side.

I'm glad you're experimenting with the products to find the right ones since we're all so different. When I was getting leaks in the early days after my surgery, I was also 'picture-framing' my wafer, using the 3M bandage product. I would just put it around my wafer after I'd put everything on, figuring it might buy me a bit more time if leaks were to happen.

Good luck, and I hope things settle down for you really really soon!

Kismet

 

[shazz]

Thanks Kismet.
I am considering putting 2 of the seals together to make them a bit thicker. Got plenty so will give it a go.
Xxxxxxxxxxxxx

 

[Terriernut]

Shazz, I'm hoping once all the stitches are out, your stoma will not be tilting downward! Here's a thought too, until Monday. You said you are using rings right? Well, if they are the mouldable rings, if you use a regular ring, then cut another in half. Use that half on top of the other ring, underneath your stoma....you know like a push up bra. :yrolleyes:

That may help, until you can get a convex like wafer to try anyway?

 

[bigtruck]

How u going now I've got mine thickened with toast and banana I'm 16 days post surgery also, hope it gets better than this! Do u ever feel nauseous ?

 

[Samboi]

Wow Shazz. You and your hubby are like stoma McGyvers! So inventive!
I'm sorry you're having so many trouble with BB.
Hopefully it will work out soon.

 

[shazz]

Thanks guys.
Misty - I will defo try that next time. Xxxxxxxxxx
Ryan - I do still feel nauseaous but I don't know if its because i am hungry. I nibble on a ginger biscuit and that normally helps. Glad yours is thickening up at last. Xxxxxxxxxxxxx
Samboi - its amazing what you come up with in the middle of the night and are dead on your feet!

Will let you know what happens overnight and tomorrow.
Xxxxxxxxxxxxx

 

[KazT17]

Hi Shazz,

I had no luck with those washer things either hun. I use a one-piece now and cut the hole really snuggly round the stoma. I have made myself a little stencil that fits my stoma, to cut the bags exactly. If you go on the Coloplast website, they have a video showing how to do this.

I use calomine around the edge of the stoma, even though it is not sore now, just in case I get a slight leak. Just make sure everywhere is dry before putting the bag on, dab around the stoma gently with a dry wipe.

I have been great for months now, not a single leak. You will get there, it is still very early days.

Love Kaz xxx

 

[shazz]

Thanks Kaz.
Am going to ask my stoma nurse for some one piece bags to try.
I can't use calomine lotion as even this can irritate my skin. I am just too sensitive!
Last night was fine. I had to sleep on my back though, which I hate, but my bag didn't leak.
Just had a lovely shower and took my bag off while in the shower and let the water run over my poor sore skin. Was wonderful!
Ozzie, that's my stomas new name, was standing up lovely so i put my powder on, slapped the washer ring on and stuck the bag straight on. So far so good.
Still don't trust tthe bags and washers though. Will see how long this one lasts.
Xxxxxxxxxxxxx

 

[Susan2]

I had a lot of leaking, but now that I am using the coloplast alterna deep convexity bag it is much better. I am fortunate that a 28mm bag fits perfectly, so I get my bags pre-cut.

Isn't it just the best to let the shower water run over your skin and stoma!

I hope that you can soon find something that suits you better. :ghug:

 

[giftedbyadoption]

I feel your pain.... I was not having leaks anymore and now I am leaking again ugh.... so scared to sleep at night because a blow out in bed is so so hard and gross when it explodes EVERYWHERE all over me my bed my hair and etc.... I have hair to my waist ....
I use cymed one peice now but my blow outs have been with coloplast ensura ( sp) sorry since my bags are on back order I am using samples but I have used these before and did well. Rings are awful with my I cant use them they never stick

 

[Jeff D.]

Shazz, I didn't read everything but I noticed you use adhesive remover. Do you wipe off the adhesive remover with a wet towel at the very least? Using a little non-lotion soap or a little water on a rag will help to get off the adhesive remover otherwise your wafer will not stick to your skin because the adhesive remover is taking off the adhesive on the wafer. Good luck!

 

[shazz]

Thanks Liz & Jeff.
Yeah I always make sure all adhesive is removed and the area is completely dry before i put another washer and bag on.
I hope you get your problem sorted soon Liz. I know how miserable it can be.
Sending you hugs hun Xxxxxxxxxxxxx

 

[giftedbyadoption]

Thanks Liz & Jeff.
Yeah I always make sure all adhesive is removed and the area is completely dry before i put another washer and bag on.
I hope you get your problem sorted soon Liz. I know how miserable it can be.
Sending you hugs hun Xxxxxxxxxxxxx

Thanks you to....
I just dont get it I really haven't changed anything
I dont use adhesive remover at least not right now my insurance doesnt cover it.
But I use barrier wipes that are supposed to HELP the bag stick better.

I dont sleep well I wake up every hour looking for leaks I wrapped my self in under pads and saran wrap last night lol... I said if I blow out I refuse to make my husband do laundry in the middle of the night AGAIN

 

[shazz]

Oh hun. I really do feel for you right now. I didn't change anything either but suddenly my bags would not stick. I now just use warm water and that's it. So far, touch wood, it seems to have sorted its self out for the minute.
Fingers crossed for you hun and hope things improve for you real soon.
Xxxxxxxxxxxxx

 

[hopeful]

Which seals do you use before applying the base?

 

[shazz]

Have tried different ones.
So far have tried dansac, coloplast, salts and a few others I can't remember.
Have tried all different thickness as well from 3mm to 5 or 6mm I think.
Have tried patching and doulbling up in places.
Seems to be ok at the moment.

 

[shazz]

Sorry just re read your question.
I don't put anything on my skin, its too sensitive. If I do put anything on it the bags don't stick. Even if I leave it a good 5 minutes before putting the bag or mouldable ring on.

 

[hopeful]

From my experience the Salts and the Eakin ones are the best. Just make sure ths skin is dry before you place the ring. And the convex plates may be good too. I went trhough pretty much the same thing as you did at the beginning.

 

[shazz]

Can't use the salts bags, they made my skin blister. Even the hypoallergenic ones.
Not tried the eakin ones. Will defo try the convex bags and possibly the plates as well.

 

[bigtruck]

I just rang my supplier for samples of the convex bags, but apparently stoma nurse has to authorise that they're suitable for me.

 

[hopeful]

Can't use the salts bags, they made my skin blister. Even the hypoallergenic ones.
Not tried the eakin ones. Will defo try the convex bags and possibly the plates as well.

I don't mean their bags. Just their seals. If you put the seal on first, then the base plate over it, then the bag. Same with the Eakin. You don;t need to use the seals from the same company that you get the base plate and the bags from.

 

[shazz]

You wont know if they are suitable for you until you try them!
I would defo ask for them as soon as. It wont hurt to try them and you never know they may be the ones!
How are you doing today hun?

 

[shazz]

Can't use their seals either because they use the same adhesive in those as they do on the bags. That's what i aam allergic to.
I know what you mean though

 

[bigtruck]

Not bad getting stronger want to get a few kg,s on again and get output improved but from what I've read that can take up to 8 weeks, I'm still going through the "why me" feeling sorry for myself bit, what about you how u doing.

 

[shazz]

Have been eating white bread, mashed potato and scrambled eggs and my output has improved a lot in just a few days. I don't need to empty my as often and its a lot thicker.
I have not had the 'why me' phase as I knew I needed my op to save my life.
Hope you see the light at the end of the tunnel soon.
Xxxxxxxxxxxxx

 

[giftedbyadoption]

Have been eating white bread, mashed potato and scrambled eggs and my output has improved a lot in just a few days. I don't need to empty my as often and its a lot thicker.
I have not had the 'why me' phase as I knew I needed my op to save my life.
Hope you see the light at the end of the tunnel soon.
Xxxxxxxxxxxxx

My nurse said the seals actually make the pouch HARDER to stick ugh.... so the past tow bags I have been scared to even try seals she said unless you have a rash or skin problem you are trying to keep a leak from getting to do not even use the rings?... I was using holister pouches and only had a leak once and they lasted 3-4 days BUT I couldnt shower with the bags and I HATED that I like to shower ha..ha DUH....
So I switched to cymed they are so comfortable and you can shower with them and they did well about 3 days ( No seal no paste just there pouch and skin prep)

Then my supplier had back orders so I have been using coloplast ( sp) sensure one piece which I wore b4 and did well but now keep leaking so I tried rings and paste and NO help.
I think I need to go back to holister but cant use them in my pool and how will I swim will my insurance give me some of the others for summer??
UGH... I was finally not depressed I am one month post -op I had such a bad time was re-hospitalized for 5 days tube fed down to 89lbs and finally home again up to 95 and feeling a little better except for pain. And NOW all this trouble started and I am so down.
I am 5/7 and usually way 127 so I am pretty weak still .....

Hope you guys have a good Monday off to my sinus surgeon fun fun ....

 

[Nyx]

Have you tried using Tegaderm with the Hollister appliance? It's waterproof and I use it all the time when I use our hot tub.

 

[giftedbyadoption]

Have you tried using Tegaderm with the Hollister appliance? It's waterproof and I use it all the time when I use our hot tub.

Its so hard because my insurance doesnt cover a lot and the tagaderm is so expensive so if I have to put that on every time I shower it will run up the bill the hollister comes of in the shower. I would be so scared to wear it in the hot tub.

We have a hot tub and I was told I cant get in now that my bag will pop?? Do you get in?


I need to do a hot tub post I am scared to death to get in and afraid of what the heat will do

 

[maria]

I'm sorry about your troubles. I've always used convatec one piece at the begining I had lots of these problems. I noticed when I used lots of soap (ivory bar). I now just rinse with water wipe make sure it's nice and clean and use prep pads and let dry and at the same time I put the bag between my legs and let the wafer get to my body temp. It melts to my skin much better when I do that.. The longer I leave it between my legs the better stick I get. Sometimes before I put my bag on I put my finger (thumb) through the hole from the outside in so it would make a little cuff. That helped me a lot~ Just some ideas.

 

[giftedbyadoption]

I'm sorry about your troubles. I've always used convatec one piece at the begining I had lots of these problems. I noticed when I used lots of soap (ivory bar). I now just rinse with water wipe make sure it's nice and clean and use prep pads and let dry and at the same time I put the bag between my legs and let the wafer get to my body temp. It melts to my skin much better when I do that.. The longer I leave it between my legs the better stick I get. Sometimes before I put my bag on I put my finger (thumb) through the hole from the outside in so it would make a little cuff. That helped me a lot~ Just some ideas.

I all ready only use water nurses orders lol...
BUT thanks so much for the body temp idea I will try that when I use the one pouch. the only this is it wont work with the cymed bags they have like tagadern so the body heat isnt what makes them stick....

Thank you everyone for your suggestions I am willing to try anything

 

[Nyx]

Hot tubs are no problem. I go in mine every night and have never had my bag pop...ever (even when the kids put the temp up to 105). Who makes this stuff up?? lol

 

[giftedbyadoption]

Hot tubs are no problem. I go in mine every night and have never had my bag pop...ever (even when the kids put the temp up to 105). Who makes this stuff up?? lol

Thats great to know thanks so much for sharing that my husband will be thrilled to know
now if I ever feel well enough to get in the heat again or strong enough
Thats a whole different day I guess cant wait for some normal

 

[Susan2]

I've never had a bag "pop" in a hot tub either, but I do find that the adhesive on mine gets very soft. Just for my own peace of mind I sometimes tape around the edges with micropore.

I went into to the public (female) hot baths in the Japanese hotels (ryokan) every evening when I was in Hokkaido last year. It was a bit daunting at first because you are not allowed to wear anything at all. I asked the female manager of the first ryokan whether anyone would mind that I had an ileostomy bag and she said that probably nobody would care or comment but, if they did, to send them to her. After that I just went ahead and enjoyed my hot baths - and some of them were HOT!