Struggling with a Challenging Ileostomy Placement

I am the owner of the world's most impossible ileostomy. For starters, the placement is abnormal due to my breast size. It constantly leaks; we're changing 2-3 times a day. I'm mentally exhausted. We've done y-tabs, crusting, and barrier extenders. I have used convex bags. I cannot use the belt; it's an immediate leak. I just feel so defeated. The skin on my abdomen is unrecognizable. Please tell me it gets better.

Hi Karasmatic85,

I totally understand how challenging it can be, and I'm confident you'll find plenty of support from this amazing community. Many of us have been through similar struggles, and you're definitely not alone in this.

It sounds like you've tried a lot of solutions already. Have you considered consulting with a stoma nurse or an ostomy specialist? They might have some new ideas or products that could help with your specific situation. Sometimes, a fresh perspective can make a big difference. Also, some members here have found success with custom-made products that cater to unique body shapes. It might be worth exploring if you haven't already.

Joining this website was the best decision for me. The support and advice I've received here have truly changed my life. I hope you find the same comfort and solutions that I did.

G-Day Kara,

Is it below your breast or under? Are you able to fit your bag by yourself, or do you have a partner that helps you?

If it's hard to see because of your breast, then stand in front of the mirror and watch it from there. Please tell us what make of bag and if it's a two-piece drainable or a one-piece drain or no drain. Do you use a sealing washer before the base plate goes on or not?

Also, your skin has to be 100% dry, or it will never stick. Please give us more information.

Regards, IGGIE

My son has liquid consistency stool, and the only thing that's kept his bag on is Durahesive pouches by Convatec. They're extended wear and stick like crazy. He has kyphosis, and it makes it nearly impossible to get a pouch to stick. But the Durahesive has saved us.

G-Day Kara,

Codybug above, as said her son uses Durahesive pouches by Convatec, which has a very strong adhesive, but you said your skin is in a really bad way; something so sticky would pull at your skin more. Talk to a Stoma Nurse or a skin specialist.

Regards, IGGIE

Karasmatic, hey there! I know what you're feeling and going through. I have had 5 that have done this, and my stoma currently, well, let's say is special. I have a backwards stoma, lol, literally, and I prolapse 5 minutes later. I retract, then it goes normal, and this goes on in a constant pattern all day. My stoma also moved in a helicopter, a circle, lol.

Anyways, if the skin is eaten away, nothing is going to stick to your skin. The best thing to use is a liquid skin protectant. Marathon and Calvion 3M advanced skin protectant, it's going to put a protective coating over the skin, and the bag will stick to it. I posted pictures below because it is not the same thing at all as the skin barrier wipes. Also, with this being an ongoing issue and being this hard with pouching issues and leaking, and nothing else working, it sounds like you either need a revision or a relocation.

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How to Manage Ostomy Leaks with LeeAnne Hayden | Hollister

I have been using Marathon skin protectant since you mentioned it in one of your past posts. It has worked so well for me. Thank you.

Hugo, I am so happy to hear it has helped.

Do you use a ring with your wafer?

Things will get better. The beginning is rough, so just hang on a bit.

You've been given some great advice already.

Be sure to thoroughly clean off any adhesive remover. I had a problem with this early on. Use only water.

For now, when cleaning the skin, avoid soaps. You can eventually use a soap with no oils, etc., but simple is best until you get a system that's working.

Dry the skin well. You might even use a hair dryer on a low setting.

Barrier wipes (do not use the creams) or the Marathon wands Beth suggested if you can get them. Make sure this dries and the skin feels tacky.

Apply a barrier ring. It is easiest to cut this and stretch it to fit snugly around the stoma. Hold down with your fingers so it sticks well.

Apply the wafer and hold down for at least 30 seconds. The warmth from your fingers will help activate the adhesive.

"The most impossible ileostomy."

Mission Impossible theme plays...🎶🎵.

Doubt Tom Cruise could fix this, but... no, your story and situation are not the first nor last.

There are a lot of members with the same exact issue. Yes, it seems impossible, but you gotta troubleshoot the real issue. Try other products.

Advice given above is solid. Won't reiterate. And don't give up.

Stoma placement in a fold of skin will be a problem. Red, irritated skin won't help adhesion, as people said above.

Just be patient. You are not alone, and others in similar situations have found an answer. Heed all the advice here and talk to your health care person. It does get better. Hang on. And welcome to the club.

Hi Karasmatic85,

I have had my ileostomy for 28 years, and I had a horrific nightmare of a time in the first year at least. My bag would come off after only having had it on for an hour; it would constantly come off, leaving my skin very red, and I remember that feeling of utter exhaustion and wanting to just give up!
It has become better over time, as I got better and quicker at putting on a new bag.
Remember though that everyone is different. Also, having good support is very helpful. We have district nurses here in New Zealand, and they would come and see me sometimes up to 5 times a day, as I really was NOT coping.

Weight changes and illness can change the way your bag adheres. There's a lot to learn.

Try to focus on the positives. It's not easy sometimes when things aren't going your way. Whenever my bag would come off at 3 am, which was the typical time I'd end up waking up completely covered in shit, my husband would tell me not to cry over spilled milk, dry my tears, send me to go and have a shower, and when I got back, the bed was remade, and he would encourage me to slowly and effectively put on a new bag.

Never ever be afraid to ask for help, and it does help if you have a supportive stoma nurse.

You still have a lot of healing to do, so be patient with yourself.

Wishing you all the best from New Zealand,

Gracie

Thank you! It's just below the breast, and typically my mom changes it for me while I am lying flat down. When I try to do it myself in the mirror, I still get the same result. It could be the products; I don't have the best insurance, so I have to get what I can afford on Amazon between shipments.

I will look into this. Thank you!

Thank you, and I appreciate the photos for reference. I never knew this could be so complicated. It's truly overwhelming.

I have a one-piece drainage bag, and I do use the ring barrier before placing the bag.

Thank you! Everyone has been so helpful! I feel seen and heard.

Thank you so much!

I really appreciate your kind words and encouragement.

In the beginning of having an ileostomy (the first 1-2 months), I often had leaks, and my peristomal skin would get irritated and open. It stung every time I had to change my appliance.

I use Convatec Stomahesive paste and powder (sprinkled around the peristomal skin), but using skin barrier wipes is the game changer. So, after cleaning the stoma, I applied gentamicin (to heal the open wounded skin), cleaned it up with water, sprinkled the powder, waited for 2 minutes, and then applied the skin barrier wipes, just dabbing lightly on the skin and around the stoma. I also sleep sideways and avoid sleeping on my back. When I go out to the doctor, I wear maternity underpants to keep the pouch in place.

I hope this helps!