Help me heal the skin

Hello, All,

My mom just had colon surgery on September 4, 2014. The plan was to remove a cancerous tumor in her colon. The colonoscopy gave us reason to believe the tumor to be about the size of a golf ball. The surgeon had every confidence he could remove the tumor along with a margin of colon on either side of the tumor, to catch any wandering cancer cells.

When the doctor got in there he found the tumor to be the size of an orange and pushing its way out the back of the colon, dangerously close to arteries and blood vessels. The surgeon was unwilling to risk losing mom due to blood loss, so he didn't attempt to remove the tumor. He said he wasn't going to risk mom bleeding to death just to prove he could get the tumor out of there. He said it is a sticky tumor. I am not a doctor. This is all Greek to me.

The doctor didn't want us to lose mom to a colon explosion due to the tumor growing over time and plugging the colon entirely, so you can guess what he did. He decided to leave the tumor in there, since it can't be removed, and he bypassed it's natural function and gave mom an ilestomy.

This is a nightmare. You know that already. Mom is 87. She is in good health besides the cancer, and she still has her mind.

Mom weighs 147 pounds today, but she is flabby from years and years of being overweight. The surgeon placed mom's ileostomy on the right side, well enough to the right of the bellybutton, but, unfortunately, in the fold of her fat rolls. When I bathe mom and take a look at her, unclothed, her tummy hangs around the stoma all the way around, and the stoma is quite recessed. Besides that, the stoma is even with the skin. It should be protruding out, like I see in all the photos of stomas online.

You already know where I am going with this, don't you? Mom's bags leak. I am changing the bags once a day, and sometimes twice. One of the emergency changes usually occurs in the wee hours of the morning, say 2 or 3 a.m.

The adhesive part of the bag is placed on sensitive skin damaged from daily leaks of the acidic output. Mom's skin there is red, a bit bloody in spots, tender, and sometimes weepy.

I have been using the stoma powder with excellent results, but the advisors at Hollister and Coloplast advise me to stop using the powder. They feel the powder is jeopardizing a good seal. The Eakin rings are a Godsend too, but they tend to raise the bag from mom's body just a bit, and the advisors believe that may be causing the leaks.

Mom has macular degeneration in both eyes. She cannot see well enough to care for her ileosomy herself, so I am doing all the work. Like I said, I'm talking a once or twice a day change. I do don't get to sleep in my own bed in my own house anymore. I do not lead a normal life anymore.

A friend, who is a physician's assistant, advised me to consider a reconstruction of the ilestomy. I have some convex samples on order to try in the meantime. Beat you to the punch on that one, didn't I?

I need to stop the leaks, heal the skin, and achieve the goal of twice a week bag change. Considering all that I've told you, to you have any thoughts?

Laurie

Laurie, first off I am so sorry your mom has had such a hard time. It must be just as difficult on her as this is on you. You are a god send for helping her the way you are. I don't use any paste, powders, potions, wipes, or other such things that everyone else has. I have had my ileostomy for two years now (heading for surgery next week) and all I use under my wafer is Friars Benzoin Compound tincture. It is a first aid product, sticky and a bit stinky but it works. Burns like the devil on irratated skin but then seals the skin, helping it to heal and as an added bonus, it helps the wafer to stick better. When you remove the wafer, all the sticky comes with it, you clean with water and reapply.

Polish Dan got me onto this and there are a few other members on here that have tried it, some like it, some don't. Myself, I keep a steady supply on hand because I am terrified they will stop making it. I wish you and your mom the very best. It's a very difficult situation.

https://well.ca/products/rougier-friars-balsam_22844.html

Kelly

Is it a temporary ileostomy or permanent? If it's permanent and causing so many issues, depending on any other health issues or concerns perhaps it might be worth looking into some type of reconstruction as your friend suggested.

Once you can get a good seal and prevent leaks the skin should heal up pretty quickly on it's own. Unfortunately, right now I really can't offer any suggestions other than the convex wafers. Pretty sure they also make convex seals as well. I'm assuming you've already talked to some of the reps at each of the major companies and explained your situation? Perhaps an ostomy belt might help keep the wafer pressed in tight enough to help keep the seal?

You seem extremely well informed and knowledgable about everything, but I'm just going to throw out some other possibilities that I can think of that can cause issues with getting a good seal (although from what it sound like the issue really is the placement in the skin folds and the recession of the stoma itself).

Make sure the skin is as dry as possible before applying a new appliance, and only use water to clean the area as soaps and other things can leave a residue which can affect the seal (like who you talked with suggested about the stoma powder - if all the excess isn't wiped off after the little bit necessary is absorbed it can cause issues).

Warming up the adhesive with your hands a little before applying can help, as can leaving your hands or even a heating pad or hair dryer on it can help activate the adhesive as well.

I would always apply the wafer while standing straight up or lying stretched out and pull the skin slightly taught above and below the stoma as well when applying the outside bandage looking part of the wafer (I used hollister - forget the name of that part) to help keep the flange from folding or bending afterwards when I sat down. Admittedly though I was ridiculously skinny after my first surgery and didn't have much concern of skin folds even when I sat down, this was just something suggested to me by my stoma nurses.

Really sorry you and your mother have to go through this. You sound like an incredibly patient and selfless person to be helping out the way you are. Hopefully you can both get some relief once the convex samples come in.