Inverted stoma - problems with leakage onto surround skin

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Persephone, I've just read right thru this thread as it became active again and I've had leakage troubles too though nothing like the problems you've experienced. I was wondering how you are getting on now? Did you have your stoma redone or did you find something else to help? I really feel for you and hope that you were able to find a solution to all your problems.
:heart: Anna
 
Hi all

I've been managing day to day with a ritual of the powder, ostoguard wipes, and more recently a paste, which helps absorb a lot of the output and prevents some of the leakage. This all does help - but not all the time, and only for a few days or so. I too have had a crappy few weeks. Last week going through 25 bags in 5 days, waking up in puddles, not sleeping and am just miserable. Have lost 1.5 stone, but purely thru starving myself, cos the more I eat the worse I feel with the skin probs etc.

The surgeon has "granted" me an appt at the end of the month - despite my evident distress back in November.

I've seen the nurses numerous times who are now coming round to my way of thinking as they cannot stop the leaking. They tried me in a two piece yesterday - it leaked before I got home.

My stoma continues to sink and shrink, is now the size of my small finger nail, it's tiny.

The nurse is bringing me in on Mon hoping to line me up with surgeon's clinic so I can get seen by him earlier, but she fears that he will not do anything. Apparently he wants me to lose the "steroidal" weight to make the stoma stick out - I've tried stressing to her though that I'd have to be stick thin to make that happen - she agrees. Plus it would take a year or two - and in the meantime, I'm miserable. I'm failing at work, I'm so tired and hungry all the time. I feel that my life is at a dead end.
 
Once you have the stoma nurses on your side, you will get places. I am soo soo sorry you are going through so much! All because your surgeon is a dick. Sorry, I say it like it is.

I would ask for an appt immediately, and file a complaint if you don't get one. You can see another surgeon there as well can't you?

I'm angry that they have done this to you Perse!
:ghug:
 
Hi Terrier...I dunno what to say really. He's the head of surgery, so, not sure. If he refuses to do anything, I think I'll have to go to another hospital.

Last week I had the pills in one hand and the bottle in the other. I'm getting desparate and I feel so upset that they don't seem to be hearing my dispair
 
The higher up they are, the worse they are...Ego Central. That means also, the harder they fall.

You should go to another hospital yes. But first, you have a right to an advocate, and your hospital has one. You need only ring and ask. You can file a complaint through them as well. I realize you don't want to risk anything right now, with an appt coming up.

But, to be prepared, ask for an advocate now and get them on speed dial. You can ring the NHS and you are entitled to receive help. Your GP can also help you out with this, and I wonder that they haven't already?

Don't you give up!! You will get this sorted out. I think this jerk should be named and shamed!
 
Persephone, just wanted to send you billions of hugs. I wish I could fly over there and sort it all out for you. Hopefully when the surgeon actually sees your stoma he will rethink his position. He obviously doesn't understand how bad it is. And if he doesn't then you HAVE to get a referral from your gp to see another surgeon at another hospital. You just can't continue the way it is, but don't forget that you CAN get it all fixed and then life will be so much better again.
:heart: Anna
 
Hi Persephone
Glad to see you back. I have been really worried about you. I just want to send as much support and best wishes your way. It will get sorted and things will be war better. Just hang in there and know we are all supporting you.
 
...well I'll cross my fingers for Monday and see what is said. I feel dreadful pressure that he thinks I can lose enough weight to make it poke out when it really is sinking in more and more every day. He thinks the weight is all steroidal - but it's not really. If I'm honest, I have a small frame but have always been overweight to some degree or other. It's not really fair of him to expect me to have to do that before they put things right.
 
No its not fair for him to expect you to lose weight before he'll do anything. Lots of fat people have well functioning, well placed stomas. I'm also carrying steroidal weight - (although I suspect a lot of it is jelly and custard weight too. :) ) and my stoma is not anything like yours. I'm 85 kilos when I should be 60 - 65; the last 10 kilos was put on in my last hospital stay while I was on tpn (and full fluids hence the jelly and custard)
:heart: Anna
 
Good luck tomorrow! Be very very precise, give details, and whip that puppy out in front of him!

And say very calmly and very very firmly that you have no intention of taking NO for an answer!
 
How did it go today Perse?? Thought about you several times today, I sure hope the idjit saw reason?
 
Hi Terrier....yesss I think it went well.
Surgeon told me that he couldn't make a spout the last time because my bowel was so inflamed and coupled with my weight that he had problems with the blood vessels, and connections.

He's had a look. Said that he'd be willing to have another go, now I've lost 1.5 stone and now the bowel shouldn't be inflamed. He's gonna mark me down as an urgent correction - nurse seems to think 2 weeks - the last time I was told urgent it was 8 weeks.

Says I'll need to go under again, an hopefully do it thru my stoma hole, but might have to be thru my wounds - depending on the success of this will depend on how long I need to stay in for.

So yesss...came away feeling much more positive that he's willing to give it a go, if not anxious, that it might fail again, and needing more time off work - I'm only on half pay.

I'm crossing my fingers for an early date to get this all sorted, I need to get on living! Thanks for all your support! It's really helped, without which, I prob would've just tried to muddle along.
 
Fantastic news! You won't know yourself once it gets corrected. At least now you've had the worst stoma ever, anything else will be a walk in the park.
All the best for the surgery. Hopefully it will be very soon and you can get back to a normal life.
:heart: Anna
 
:dance: Zippity dooo daaaaaa!! Wonderful news! All fingers and paws are crossed in this household for you sweet Perse!

And....well done you! I dont think that appt was easy for you, and you DID IT!

Now, let's hope it's two weeks instead of more, and hope hope hope it is a success and a quick recovery.
 
Absentminded said:
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.
Click to expand...

I saw your post and ordered some (different brand, but same type of thing). They got here today and I tried one right away. These are good!
 
Lucinda I had forgotten about these. I used them with my last stoma. Thanks for reminding me. :)
 
Anyone have any idea re the practicalities of stoma revision? i.e how long will I be in hospital, how long off work etc - in your experience?
 
The ladies I know were in and out very quickly. And their proceedures were pretty quick as well from what they said. Both of them said 1 hour and bit for the proceedure. Both were out within 2 days. (had to wait for their bowels to work again)

So...here's hoping yours is the same. I don't know what their recovery went like at home, sorry.
 
So I've had my refashioning done, was in Thursday, discharged Friday all as successful, with a huge proper spout! Yay! I have to say, changing the bag is 10 x as fast, and so much easier without having to constantly prepare and re-prepare the skin. For those of you who always had a proper spout - you don't know how lucky you are!!

Seemingly it went much easier, not sure why. However, the day after I was rushed back into hospital with agonising pains and constant vommitting for about 12 hours, I couldn't cope, the pain was even worse than the colectomy - and I had no major cuts this time, only those surrounding the stoma. Was in for a day or two and discharged again, and although I've had to take the regular pain relief, I think I'm on the mend now.

However!! My new stoma is leaking :(. I'll call the stoma nurse tomorrow, but any advice in the meantime would be great. My stoma stitches are quite raw and bloody, which I think isn't helping the bag to stick around the outside. My skin looks a bit raw, so when I just changed the leak I bunged on some powder to dry it out, it's all still swollen. Otherwise, I'm not quite sure why it's leaking. The new bags she's got me in are really soft, and flat and my stoma sticks out which is great, the output hole is centred, even better, but the flange just doesn't seem to be that sticky, and I can see that it's all unstuck around my stoma.

Any advice in the meantime? Should I use some paste or a seal to catch the excess blood? Should I be worried about the stoma sinking with the bleeding, if it's already trying to pull from it's stitches? It really bothers me seeing that it's unstuck around my stoma and just waiting to see if enough gets thru the hole to unstick it!
 
Glad to hear that the surgery was successful and you have a proper spout! The only advice I have for you right now is try putting some strip paste, or regular paste around your stoma to try and keep the blood from seeping under the flange. Have you tried different appliances before? I found that some stuck better than others. Also, tegaderm around the edges will help too.
 
Hi Nyx, I had considered whether paste would be ok, but wasn't sure whether I'd be allowed to with a new stoma, whether it'd do it harm or not.

No, before I had a flat bag, for a week or so then put on the convexity bag that I pretty much stayed with. I don't think I'll be on these for too long though as they don't suit me in other ways either, hard to empty, and a bit too small for my liking.

I shouldn't worry about it still bleeding?
 
I wouldn't worry about it. Blood is bound to happen with any new surgery. I don't really recall how much my stoma bled after my surgery as the first week was a bit of a blur for me. But, even now, my stoma bleeds quite a bit if you even touch it, and I always find dried blood under my flange. Try the paste, it should keep the moisture out from under the flange for you.
 
I guess I should clarify...don't put the paste right on your new stitches...if you can, run it around the opening of your flange and then put it on. I'm not sure how well it will come off of the new stitches...but if you put a sort of 'barrier' of paste around the opening you should be ok.
 
yay! Finally! I am SO pleased for you.
Definitely use some paste. Apart from protecting against leakage it actually helps heal the skin so I imagine would be good for the stitches too.
I'd try some other bags too. Ive found some brands don't stick to my skin, others using the same brand have no trouble and love them. (Coloplast)
Also are you putting barrier wipes over the powder? I've found if I put the powder on then gently dab the barrier wipe on and repeat building up layers that protect the skin. Sort of like a scab I guess. When I've put the bag directly over the powder it comes unstuck.
I wouldn't be worried about the stoma sinking with the bleeding. Just be gentle around the stitiches so they hang in there as long as possible to allow the skin to heal. But even if they did come out quickly it should be ok I think. Hard to do cos they tend to get irritating and you just want to pull them out but leave them as long as you can.
I still get bleeding right around my stoma - nearly 4 months in. It comes and goes.
Good luck with everything
:heart: anna
 
Hi Perse
Glad it's a much better Stoma. Sounds much better to deal with.

I remember when mine was new that the stitches came away on the side and the Stoma nurse just used stomahesive powder and then applied the cavilon wipe in a dabbing fashion to remove any excess powder and protect the skin. I now use a blow dryer to blow off any excess.

I hope you as feeling much better.
Janette
 
Thanks Ladies, that's really helpful. I'll use the paste and try not to stress about it sinking again! The bags she's given me are nly temporary until it heals a bit, so I'm not too worried that I don't like them, she's reviewing me in a week or so. Of course it doesn't help that my doctors still haven't authorised my new prescription, and that's been over a week!
 
I'm soooo happy for you Persephone!!!! Other than the immediate leak issue, you sound so much better. I suspect you will quickly fix this leak issue when you are able to use different bags. Definitely try the paste like the others said and hopefully that will get you through for the time being.
 
Quick question - I can't remember from the last time, when I had my original stoma...

Around my stoma now, my stomach is really hard and sticks out, and I can't remember if it did that the last time, and it's just because it's swollen and sore - and is still a little numb with the local believe it or now, and is bruised - or is it something more? Will it remain hard and solid like that in that area because now I have a proper stoma?

It feels quite odd, like I want to push it in. It's not a hernia is it :S
 
At this point, I would assume it is normal. If it's still hard in a couple of months, it could be something more.
 
I think ask your surgeon. Its probably ok but better to check. The numbness could be because nerves have been cut. I have numbness all over my stomach form the surgeries I've had. Handy for the daily injections of blood thinners they give you in hospital. :). I always get subcut injections into my stomach.
 
Hi Anna
Me too. I have hardly any feeling in the skin over my abdomen. Very handy for humira injections. Sometimes feels really surreal watching the needle sink in but not feeling it.

Perse hope all is going well still.
 
I also have very little feeling on the surface of my abdomen except for one spot on the left. This, of course, was the exact spot chosen to give me Lovenox injections everyday that I was in the hospital after stoma surgery. Lucky me! :)
 
Hey, thanks for this. The numbness is going - and I think it was where the local was. The flesh itself around my stoma feels a bit more pliable and less stretched, but when I lie down, it's like I can feel hard, rigid pipes underneath my stoma, forcing it out, and it's making my bag shift when I move. I think I'll give my stoma nurse a ring on Mon just to ask if that's normal, cos I really can't remember that the last time. I'm still overweight, and so my abdomen should be all squashy, but it's really hard and sticky out there.
 
I refused the Lovenox in the abdomen. I made them do it in the back of my arms. Some of the nurses gave me dirty looks, but oh well. It was the only thing I was a stickler about.

I still have numbness as well and a friend of mine told me his numbness never went away.
 
I guess I'm lucky, I have no numbness on my belly at all besides one spot on my scar near my bellybutton. At one point when I was in the hospital and was getting the heparin shots in my belly, I had to tell them to move to somewhere else as my stomach was getting so sore and bruised I couldn't take it any more. They moved to my thigh, then my arm...it was horrible. I was glad when they switched me over to the coumadin in pill form.
 
Katiesue, why your arm? Didn't that hurt more?
Nyx, I can relate to the black and blue. My whole abdomen was a mass of bruises after nearly 5 months of heparin injections. Everyone else shuddered to look at it but cos of my tummy numbness it didn't hurt at all. Sometimes when I was showering certain spots would just start pouring blood which wouldn't stop cos of the heparin. Looked scary but wasn't really a problem. :)
 
I only have numbness localized to the middle of my stomach area, I could feel everything else and there was no way after all the cutting I had just go through I was going to deal with a shot to the tummy. :)

Back of the arms wasn't horrible but the lovenox hurts no matter where you put it anyway.

Back of my arms were black and blue for about a month after and I had people asking me if my husband was being nice to me or not. LOL That coupled with me walking very slowly didn't look good for him :)
 
I thought everything was going really well with my new stoma. I was having some leakage, I think due to the blood from the stitches, but the last few days I've had a few problems.

My stomach has been gurgling like crazy, and I get a lot of pressure when my stoma outputs, and it feels uncomfortable to almost the point of pain most of the time. It's been about 4 days now. I thought maybe it was a blockage, but my stoma seems to be working normally, just releasing a lot of wind and the sudden tight pressure feelings is alarming a bit, almost like spasmic period pains - except in my tummy.

Any ideas?
 
I have the pressure feeling all the time...you get used to it. Sorry I don't have any advice for you...but glad your new stoma is working better!
 
Haven't got a follow up appt yet, but it seems to have eased a bit today.

I had a curry last night! I fancied one, but some warped logic said to me that if there was a blockage or something wrong, it might whoosh it out of me. I certainly haven't had the pains and discomfort as much today.

I know we're supposed to expect a certain amount of a pressured feeling, but it was getting quite painful, where it hurt to walk and made me want to double over. Cross my fingers its fixed...and now just have to sort the other niggly bits.
 
EEK! Glad you're a bit better. That doesn't sound like normal pressure pains, though. I wonder if you've got scar tissue that's making some of your guts get twisted up from time to time. Hopefully it will continue to ease up. Hugs!!!
 
How are the pains going now Perse? Hopefully they have eased up but if not I'd check with your doctor or surgeon, You shouldn't have pain that makes you double over. maybe its all just settling in pains but better to be safe than sorry.
Hugs, anna
 
Hi Anna, yeah they seem to have settled down. Mentioned them to the stoma nurse and she said that they're probably just settling in. Stoma still aches a lot around the outside, and not sure if it's skin damage or just it settling down from the op n stitches either. We'll see I suppose.
 
Hi Perse
Glad things are settling down for you now. Was just wondering how the revised Stoma is going? I know you have been having some other issues with it, but just wanted to know if the original problems are any better?
Cheers Jano
 
Hi Janette

Things continue to be a bit up and down. My new stoma is a world better, and changing my bags is so easy now that I don't have to keep preparing and re-preparing the skin, as my output hole touched it.

Stoma nurse is trying me on a few different bags to find the right one. I still feel a bit sore, and I'm not sure whether it's because there's still a bit of leakage underneath the flange, or whether it's still just all trying to heal, the skin, the stitches etc.

I was having some tummy pains last week which went, and the last few days have come back in spasmic pain as my stoma is working, and is really uncomfortable, and I don't know what is causing it but hope it settles. Was meant to be back to work today but didn't go, as I had the pains last night and this morning, which meant moving hurt. It's a real bother to me, and just the constant hope that things get to where they were before where I felt fit to an extent, and didn't notice that I had a stoma or a bag. It feels like it's constantly weighting me down at the moment, and I hate it when it outputs because of these stupid spasmic pains.
 

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