Is My Stoma Shrinking? Seeking Advice on Recent Changes

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whufwhuf
Mar 13, 2025 4:51 am

Hi Ostomates,

Last month in February 2025, my chemo was delayed due to pancytopenia and followed by a blockage, which resulted in vomiting everything I ate or drank, so I had to get hospitalized for 2 weeks. This resulted in giving time for the peristomal skin to heal, and my stoma looked very healthy for the first time ever (no excoriation, weeping) after 3.5 months, and I was super excited to see it finally healed.

After coming back from the hospital, I changed my appliance (I do it every 2 days) and was surprised to see it was excoriating again around the edges. It got worse after my 5th chemo, which was 2 weeks ago. Also, it stings so much around the stoma that I couldn't bear the pain, but every time I change the appliance, I saw the skin in that part was fine!? I don't understand.

My stoma is not round, so I have been covering the inactive part, and I never had to cut it to fit the active stoma because it fitted perfectly, but I think it has shrunk because there would have been no stinging if it hadn't leaked somehow, wouldn't there?

Is it because I have been eating a lot of sour food? Because since the vomiting, I have a problem eating normally, and sour food like fruits or salads are the only food I could tolerate. The smell of any meat makes me sick.

Today, while I had liquid output coming out, I had to change the appliance (how fun. Not!) with the smaller diameter one, hoping this will stop the stinging.

I attach pictures here (sorry if it is a bit gross) for reference. The first one was taken on Feb 14th, and the second one is how it currently looks.


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IGGIE
Mar 13, 2025 5:22 am

You have to get that fixed right away. Contact your stoma nurse and get her or him to push the surgeon to operate as soon as he can to relocate your stoma. That is very bad.

Regards, IGGIE

Posted by: Karen & Stella
Fay,

I am one of those few people who still have a lot of output at night. However, I suffer from short gut syndrome after seven bowel surgeries that led to the loss of much of my small intestine as well as my large intestine from the initial bowel cancer surgery. It does get better over time as your system adjusts, but an ileostomy can be a challenging adjustment. It's important to connect with a good Enterostomal Nurse - ET nurses who can help you problem-solve over time. It's been five years since my initial surgery, and I had a great visit with a new ET nurse in December. He really helped me with the problem of high output at night. I had been getting up every 90-120 minutes to empty my high output bag because of filling. If I slept for three hours without emptying, I would have problems. My ET nurse helped my husband and me make a nighttime collection system using a Rubbermaid juice container with a handle and my old CPAP hose. This is connected to one of my two-piece high output bags and allows for continual drainage. It isn't pretty, but it has been a real lifesaver. I guess the real message I want to share is to stick with it, find a nurse who you can work with, and together you will find solutions to whatever challenges you face. This website is also an important support for me and others. There is nothing you will go through that others haven't already faced and figured out. There is so much wisdom here. Read the materials they've put together for newbies. There are a lot of great suggestions to use. I hope things get better quickly for you.
Karen
whufwhuf
Mar 13, 2025 9:53 am

I am supposed to have a reversal after I finish my chemo sessions. The chemo has really affected the peristomal skin in healing; that's why it took a while for it to close.

IGGIE
Mar 13, 2025 10:45 am

But how long will it be before the reversal that needs fixing now?

IGGIE

ron in mich
Mar 13, 2025 1:12 pm

Hi, what do you use, a convex wafer or just a flat? A convex will help push out your stoma.

 

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SusanT
Mar 13, 2025 8:13 pm

They usually won't do surgery until the chemo is out of your system.

Have you tried the skin protector sheets? You really need to do something while you wait. It also looks to me like a convex wafer may help.

Definitely measure carefully and make a new template.

whufwhuf
Mar 13, 2025 10:21 pm

Hi Susan,

What is a skin protector sheet? Is it like skin barrier wipes?

There aren't many types of appliance brands where I live. And the only convex ones available are the two-piece, which is not ideal for me because I change mine every 2 days, and they are quite expensive here.

Past Member
Mar 14, 2025 12:01 am

If you have to wait until chemo is done, try using a liquid skin protectant, Marathon or 3M Advanced Skin Protectant. They are not like the skin barrier wipes. These actually put a protective coating over the skin, and your bag will stick to it. Also, when you cut your wafer, are you cutting to the shape and size of your stoma? If you aren't cutting to the shape of your stoma and if you're leaving gaps, you will leak, and your skin will eat away.