Help Needed: Daily Leaks with Skin-Level Ileostomy

Hello! My daughter ended up with an ileostomy after a car accident. They plan on reversal in a few months, at her 6-month post-surgery mark. Until then, she has a skin-level stoma. We have had several wound nurses, and no one has had any suggestions that worked to stop the leak. Her stoma is not only skin-level but also has creases on both sides, one more than the other. It's right at her bending line. We have tried 15+ different bags over the last few months, including all the convex and the deep convex. It doesn't pop out at all. We use rings and have even filled the creases with either paste, strips, or pieces of a ring. She has a hernia belt now but used the regular ones before. The leak starts right under our stoma and gets in between the skin and ring, or just the barrier before we used rings. We heat it with a hairdryer and make sure it's clean and dry. She uses Marathon barrier because after a couple of months, the crushing was making her skin worse. Her stoma is oval as well. We have been very diligent with skin care, so luckily it's not too bad. Some redness and a little irritation that heals pretty quickly. She's not strong enough to have surgery sooner or a revision since she is still healing from the accident. I feel like I have read all the posts, videos, everything. No one has had a solution. We only use Dial orange soap to clean during showers. I feel like I'm overly educated on this and still can't figure it out. We are over it! Someone please help!!

You do not talk about skin prep. It sure helped me.

Perhaps post a photograph of the undressed, cleaned stoma - it may prompt a specific thought .....

Skin prep may help ..... as suggested .....

So too may the weakness element .... for self-empowerment can also go a long way to help an ongoing engagement from the Ostomate - during the time the change procedure is not happening? How much is the patient able to 'self-help'?

There may be an intermittent element - which the carer is unaware is happening?

Or .............. it may simply be a question of awaiting the point of revision surgery as the internal healing is needing the intermittent time before progressing to the next stage?

There WILL be a solution

BW, patience, and good luck hopes all come - hang in there!

~ ~ ~ ~ ~ ~ ~

:-0

You are definitely overeducated on the subject. You did your research.

You probably know more than some stoma nurses. I say that's wonderful.. you're a good mom. You never gave up, so kudos to you. How old is your daughter?

After reading your post and replies, the likely answer is revision, but you said she's too weak for that. I'm guessing the car accident is the reason.

I am sorry she has no other options but to put up with this ill-formed stoma.

Perhaps the surgeon could just pull it out a bit more? I have heard of that being done.

To some degree, it's incompetence on the surgeon's part for a recessed stoma like that. Sadly, the patient pays for his lack of experience.

No sense pointing fingers, but you have covered every angle possible, and it's basically a mechanical issue.

Pull stoma. Solve problem.

Perhaps she regains a bit more strength next month to have it done properly? I hope that will be the case.

Hi StomaMom, since she's tried everything and needs to get through the next few months, maybe try Hollister Adapt Oval Convex barrier rings. They are very different from typical rings and sit right in the dips around the stoma. I was having some leaking a few months ago and tried these again along with my convex Hollister bag, and they made all the difference. Hang in there.

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How to Get Back to Fitness After Ostomy Surgery with Ryan | Hollister

I mentioned we use Marathon, and I meant to say crusting, but it autocorrected to crushing. Skin prep is extra important in this situation.

Thank you, warrior! We're doing our best with the situation we are in. My daughter turned 17 just days before the accident. She applies her own bag with my supervision now, and she's doing so well. I agree, revision is the fix. I will call the surgeon and see about pulling it out a bit, though. He is aware of the situation and has had no suggestions. My poor girl.

This is a wonderful suggestion, and something we have not tried! Thank you so much!

You're very welcome. It's worth a try - sometimes you never know why something works and another doesn't! 🤞🏼

Eefyjig's suggestion is great. I don't have anything better.

I just want to compliment you on your research. You are incredibly well-informed. Your daughter is lucky to have your support.

You are all so wonderful; thank you so much! The encouragement goes farther than you can imagine.

G-Day StomaMom,

I think the surgeon could pull the stoma out more without any need for an operation, as Warrior suggested, and probably that is the way to go.

Good luck and keep us up to date.

Regards, IGGIE.

Hi.. yeah, your surgeon has no suggestions because he simply doesn't know. If he gives you a hard time about this, "the pull out of stoma," I would seek a second opinion.

I think I may have a spare Hollister brand convex flange for you... if you'd like some, I can send some to you.. you would need a bag though as I have only the flange mount. Let me know.

We can PM each other if you want to try them.

I'm sorry your daughter is going through this; it sounds like you are doing everything you can to help her. I have an innie stoma and struggle constantly with skin irritation. Mine was revised, but they couldn't find any fascia to fasten to, so my stoma is still sunk below my skin. I saw the PA this AM who assisted my surgeon, and she tried some powder and a really thin covering over the powdered raw skin, and it only lasted until 5 PM of the same day. I tried it again with the powder and a really thin layer of the colloidal skin, so we'll see how long my version lasts. The powder seems to make everything less sticky for me. I just ordered a sample of this thing, something called a ‘flowassist seal' by Ostoform. https://ostoform.com/flowassist-seal/ and I hope it works for me. Depending on what I eat, my output varies from being liquidish to being like toothpaste; it only gets really solid if I eat nothing but meat! I wish you and your daughter luck with this process, and I hope you find something that works while she recovers!

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Hi stomamom

My first stoma was virtually skin level. I found that if I used a barrier ring with an inside diameter hole a lot smaller than the diameter of the stoma and the hole in the wafer to match, it worked well for me. This setup only really had a hole large enough for the output to pass through. Secondly, I would also ditch the soap and just clean with warm water.

I've been trying the flow assist with my colostomy because I have highly liquid output. It seemed to be better, but I didn't like the seal. I ended up putting a regular seal under the flow assist. I'm still experimenting, so I can't recommend it, but it's an idea for you.

You are such a support to us, Warrior, in having available supplies and, in my case, in listening. 🤗

I'm going to give it a shot, the flow assist, simply because my skin is still under attack. I've had to change my device twice today because of leaks, and twice yesterday because I saw the doc and then her setup leaked. This last change I'm giving up on all the options for trying to protect my skin and just going with the stoma powder and the skin protectant. I really need to call the wound nurse to see if they have anything they can recommend. What I really want is a tube that I can stick in my stoma and then put that into a bag not attached to my side so my skin can get the air and heal. Doc said I need to invent that.

I read a post somewhere where a guy got a lawn chair that you lay on your stomach and cut a hole for his ostomy and just let it drain straight down so he didn't have to wear a bag and give his skin a break. My daughter wants to do that, but she has a bunch of broken bones, so I would struggle getting her up. Haha

StomaMom and Dwild,

I do have some measure of trying to manage skin that needs air dryness in order to heal... while surrounding an active stoma...

FLUDROXYCORTIDE TAPE

This may be an 'outrunner'... and you would need to ascertain from your wound nurse/a consulting dermatologist whether you could benefit from its use... but this is a product that is a very, very thin transparent plastic medical film [like a transparent fine skin layer] which carries 4 micrograms of the steroid fludroxycortide per square cm... IT MAY ONLY BE USED INTERMITTENTLY AND STRICTLY UNDER MEDICAL SUPERVISION.

Ask your professionals whether it is a contender to help... I found it could be used intermittently when I had an ongoing situation whereby I needed to have the peristomal area uncovered [open to the air]... and for short periods of time in order to go out to an appointment, etc. I could use this and apply a backing wafer and collecting bag for a short period of time, i.e., it provided a 'waterproof skin with medication' to help the skin stabilize [grow and heal] onto which my 'appliance' could be tolerated.

CAUTION:

StomaMom and Dewild... please note I am not a medic or a chemist - so this may NOT be suitable for your application - but you can but ask.

It was the ONLY thing 'tolerable' that got me through the phase following the explant of the titanium TIES device and the resultant trauma site of that journey... along with the intermittent use of a Coloplast backing wafer which contained zinc - a compound that aided the process.

StomaMom, I am not too certain what base diagnosis your daughter has - whether a base Crohn's disease figures in addition to her injuries... but, to iterate, PLEASE CHECK WITH YOUR DERMATOLOGIST/Consulting Clinicians BEFORE PURSUING THE USE OF THIS PRODUCT.

By the way - air and SUNSHINE are great healers... so time spent without the abdominal/peristomal skin covered is good... once you have figured a system of holding an airspace between the outpouring stoma... to keep clear of 'effluent' [there are products I believe, and maybe an AI search for the same will turn these 'collars' up... if memory serves - already mentioned on this site].

You guys have my empathies... any questions I will try to help.

BW

Jayne

I'm new and also have an oval stoma with side leak issues. My nurses have been working with me on different things to try out. Skin barrier spray instead of the wipes has been helpful. Also, adhesive spray has made a difference. If I do get a leak, it's right on change day. The barriers were pushing my bags off and up, making the leaks possible. There is a paste technique she showed me that has done wonders. I'd be happy to upload a pic in a few days when I change again, since I just changed it this morning. It was a bit odd from how I was shown to use the paste, but it's the longest I've been able to go in between bag changes, and it lasts me 5 days. My skin was so irritated because I was barely making it 3 days. I do 3 layers of barrier prep and stoma powder, and it really helped heal my skin quickly. Also, the remedy cleanser is awesome. It works wonders instead of using soap. Skin dries well for prep to be done on skin.

Do you put another barrier prep over the powder layer?

Her skin is crying these days, still changing the bag daily. We will see the surgeon in 2 weeks to schedule her reversal for mid-August. She has no prior issues with her colon; she was heavily sedated, and they pushed a lot of laxative while she was in a coma, and shortly after, her colon perforated in several spots and was able to be saved. I think I'm going to order some skin tac wipes to see if we can get it to adhere better. The leaks are no longer on the sides, just the bottom. The convex bags aren't pushing him (Steve the stoma) out at all, so I'm wondering if it's even worth wearing that kind since she says they are uncomfortable. We fill her crease with the strip paste, and it has worked great. But the bottom of the bag unsticks due to the moisture from her stool. I wish the ostomy form would have worked for us. I couldn't shape it enough without compromising the integrity of the design. We're using crusting and marathon on her skin now, but the other day she put a ceramic ring and Hollister bag on, and the next day when it fell off, her skin looked better. No skin prep used. Weird.

Do that setup again with the ceramic ring and Hollister bag. This time use skin prep. 

Skin looking better is a step in the right direction. The bag keeps falling off because the skin is in such bad shape. Hopefully it will continue to heal and she will get longer wear times. 

I'd stick with whatever has limited the leak location too. 

These ceramic rings you speak of, are they the Cera rings and spell check changes it to ceramic?

Honestly I don't know. She called them ceramic rings and I didn't want to confuse her by using different terminology.  

Spell check got me, and I was tired. Im sorry, yes, I did mean Cera.