Colostomy Leaks Due to Kyphosis: Seeking Advice

Hello all, my son is 20 and has a new colostomy 1 month post-op. He has pretty severe kyphosis (which I was assured wouldn't be a barrier by his surgeon), but I think she was wrong! He is hunched over all day when he sits up, and his ostomy pouch sits exactly in a skin fold. So it puckers at the fold area and leaks, no matter what I do. I checked him into the hospital for ostomy support, and they couldn't get it to adhere for more than 12 hours! They just tell me to keep trying different strategies, but I'm all out. I've tried adhesive extenders, rings, putty, paste, 20 different pouches, multiple adhesive remover brands, multiple skin prep brands... I warm the pieces so they'll stick... I've put pouches on crusted skin and non-crusted skin. Right now, I have to put on a new bag 2-3 times a day, and his skin is horribly broken down, which just adds to the difficulty. Anybody have something for me? I've put the beads into the bag (he has liquid stool), I empty the bag frequently, and I've tried a belt. Help!!!

Hi Codybug,

You've come to the right place, and I'm sure you'll find plenty of support from this large community. Many of us have faced similar challenges, and sharing experiences can be incredibly helpful.

For your son's situation, have you tried using a convex wafer? They can sometimes help with uneven surfaces by providing a better seal. Also, consider consulting with a stoma nurse who might have more specialized knowledge about dealing with kyphosis-related issues. Sometimes, a fresh set of eyes can offer new solutions. It might also be worth exploring custom-made pouches that can accommodate his posture better.

It's great that you're part of this community. You'll find lots of support, information, and some really cool people who understand what you're going through. Keep reaching out, and don't hesitate to ask more questions!

The only thing I do different is use a steam roller on my ring. I use a Salts ring with aloe and take the backing off, place the ring, then use an empty tape spool to roll over the ring with the backing in between. This should ensure there are no air pockets under the ring. Hope that will help.

Hello,

I was surprised to see the word Kyphosis in your topic title. I'm male, age 67, and have moderate Kyphosis that slowly manifested itself after age 40. It gets worse every year. I can stand up, but I am hunched noticeably. I've lost 4 inches of height.

I have skin folds, but farther up near the chest area.

I have a sigmoid colostomy, 2 years post-op. My colon was punctured by inguinal hernia repair mesh. So, I didn't have underlying intestinal disease.

What type of colostomy does your son have, and why did he get it? You said his output is liquid, so I'm gonna guess he has an ascending colostomy.

Since mine is sigmoid, the output is thick, paste-like. If it gets on my skin, I suffer no irritation.

How far does his stoma stick out? It should be at least 3/4 of an inch at its lowest shape. If it's too close to skin level, it will cause continuous trouble.

Before surgery, did the surgeon spend time "siting" the area where the stoma was to be located?

Sorry for all the questions, but it is necessary to give you an accurate answer as possible.

Can you recline him somehow to take the pressure off? I don't have kyphosis, but I can't stand to sit straight up because it's uncomfortable on my ostomy area. I don't have anything close to having issues except it's uncomfortable, but I can see if someone was hunched over excessively that it could cause real issues, especially if a person has skin folds, fat rolls, or whatever you want to call them. How about irrigation (you'd have to ask those on here that do it for specifics) so you wouldn't really have to worry about output much except when flushing him out?

The skin folds are going to be endless trouble. The surgeon may need to change the site for a long-term solution.

If it's on the sigmoid or descending colon, definitely investigate irrigation, which should free him from the bag.

Consider the skin protective sheets made to protect the skin from adhesives. This probably won't fix the leaks, but it may help protect his skin.

I am not familiar with kyphosis, but I get the general idea. Thinking outside the box here, if his hunching is reasonably rigid, could you use paste in the skin folds to even out the surface and apply the wafer over the folded skin? That might be a totally crazy and impractical idea, so I'm not going to be hurt if it's a no-go. I'm just trying to give you new ideas.

Words of Encouragement from Ostomy Advocates I Hollister

Hi there,

So to help try and protect the skin, try Marathon or Calvion 3M skin protectant. If the skin is broken down, nothing will stick. The bag will stick to one of those skin protectants. Is he in a flat or convex wafer?

Cody, the good news is there is a solution available — it takes time sometimes. While I was in the hospital, the wound care specialist and one of my surgeons spent 2 months trying to find a way to keep a colostomy bag on me. I had lost 100 lbs, which caused folds and wrinkled skin on my abdomen — there was no flat area to site a stoma. Therefore, re-siting was not an option. The colostomy appliance needs to be situated on a flat area. The stomach takes on different shapes whether sitting, laying, or standing. If the puckering occurs while sitting, you should install the appliance while in a sitting position. If there is a cavity around the stoma while sitting, you need to fill in that cavity before applying the barrier — I recommend you use a two-piece system. To fill in the cavity, you'll need a barrier ring:

1. Cut the ring in half
2. Slightly stretch each half to make them straight
3. Twist/Roll each half into a cylinder so it kind of looks like a tiny cylinder of rolled clay
4. Place the cylinders in the cavity, wrapping them around the sunken area.
5. Use both sections, if necessary, to fill in the area.
6. Repeat if necessary to ensure the sunken area is level with the surrounding skin.

Now you can apply the appliance to the skin. You may have to experiment to determine which manufacturer's barrier has the strongest adhesive — for my skin, Coloplast has the strongest adhesive; therefore, I use their SenSura Mio appliance. To provide additional adherence, use barrier extenders — I prefer Coloplast's Brava Elastic Barrier Strips (Curved). Hollister has the CeraPlus Barrier Extenders, which you can experiment with also. Pick the one that adheres best to your son's skin.

You can also experiment with the orientation of the appliance. In my case, I use mine oriented in a square (⬜), but many others use a diamond (♦️) configuration.

The skin may also be painful; therefore, I recommend Rx 2% lidocaine gel:

• First, apply Lidocaine 2% gel to the desired treatment area during a pouch change, allow it to sit for 5 minutes to facilitate anesthesia, then wipe it off.
• The gel can be removed easily without greasy residue, so it does not interfere with appliance adhesion.
• The skin anesthesia permits thorough cleaning of the site with adhesive remover, followed by a warm water rinse.
• The skin is then dried with a low-temperature hair dryer.

The Lidocaine's anti-inflammatory effect decreases skin weepiness — enabling improved pouch adherence.

Thus, you will have to determine if it is best to apply the pouch while standing, sitting, or laying — determine which works best. It also helps to know if you have an ascending or transverse colostomy. I have a transverse colostomy with liquid output — the surgeon says it's liquid because 1/3 of my colon has been removed. I eat plenty of bananas to firm up my effluent; I also take loperamide (Immodium) 90 minutes before each meal and before I go to bed to slow down my effluent, which also helps to firm my effluent. Semi-solid output is easier to manage than liquid output.

Don't despair if you don't get it right away; the more you experiment, the better you understand the principles in play.

Hi Codybug,

I wish that I had some words of wisdom, and I wish I knew how to help you; unfortunately, all I can offer is to pray for your son.
If your son's stoma is in a skin fold, his surgeon obviously made an enormous mistake by placing it there, or they had no other option.
I remember what a nightmare of a time I had when I first got my ileostomy 28 years ago, though. And I can remember all too clearly having to deal with very angry skin that was completely eroded away, stinging, and bleeding.
As the others have commented, we do not know what type of ostomy your son has. But I can certainly understand your frustration. It almost feels like perhaps he needs to have his stoma placed in an area where there is no skin fold. No matter what you do, there will be leakage problems.
I definitely think you need more support from a stoma care nurse consultant. They will be the best person to advise you if you could try some different products.

I don't have my stoma in a skin fold, but I do have an old ostomy scar that runs directly underneath my stoma, and I had no end of problems getting bags to stick until I was finally asked if I was willing to trial the SenSura Mio deep convex two-piece system from Coloplast.
It was the very first time I did not have to constantly change my bag. Although I have found that holding it in place with my hand for around 15 to 20 minutes helps it stick better.

But the fact that you say that having taken him to the hospital for stoma support and that it took them 12 hours to make a bag stick is telling - if the professionals could not make the bag stick, how on earth are you supposed to manage??

I am sorry that I have absolutely no advice to give to you.

You will be in my prayers, though.

Kind thoughts from New Zealand,

Gracie

I had the same problem for weeks in rehab because of my baggy, saggy belly bulges. They actually discharged me home without ever figuring out how to fix it. Thankfully, a very experienced Ostomy Care Nurse put me in a one-piece, drainable, soft convex appliance (Coloplast), and I got my life back! If you haven't already, you might try speaking to the product specialist at a couple of different manufacturers and get their recommendations. They can send you samples and will follow up to see if changes help. Don't give up!

Thank you all for the input! While the hospital ostomy clinic was useless, I found that making an appointment with an ostomy nurse with Convatec was the most helpful. She took an hour and had me remove and replace his pouch - and she suggested a light convex one-piece with Durahesive, which is an extended wear adhesive, I guess. That has seemed to help a lot, and I'm consistently getting 48 hours at a time before leaks. Whew. It's been torture getting here.

I'm so glad you found something that works!

I have also gotten great help from the Convatec people online. I have a severely retracted stoma that is in a belly fold, so getting bags to stay and not leak has been a journey for me as well. They sent me a sample of their deep convex bag, and while I haven't had any issues with the adhesive or the bag, what happens is my skin still has suffered. In fact, my skin got so bad that the bag wouldn't stick near the stoma but would stay stuck on the outside, so I would think it was working until I was in pain. Now I'm using Brava sheets underneath my Convatec bag, and they do seem to be helping my skin to heal. I also use that skin soak that dries up your skin so that the Brava sheet and the bag both stick better. After visiting the surgeon yesterday, I put a bag back on without the Brava sheet, and it just flat out hurt; the Brava sheet makes a huge difference.