Understanding and Managing Ileostomy Challenges

Hi, I have had my ileostomy now for 14 years. Everything was going okay, except the embarrassing bag filling up while I was out or at work. Now something is wrong and I am scared to death. I just pray it will be an easy fix.

What is it that is wrong?

Can you describe what's going on? It's impossible for us to help with no information.

Did it stop filling up? Need a bit more detail on what exactly happened. If in doubt, go to the ER.

...And the plot, as well as poop, thickens... or not.

Cliffhanger alert... 🤦‍♂️

My Ostomy Journey: Ryan | Hollister

Hi, sorry I didn't add details. I have really bad pain inside, right behind my stoma. My output has not changed. It feels like I seriously pulled a muscle. It hurts with everything I do. My CT scan this week showed 'intestinal loop into the subcutaneous fat of the ostomy.' I have no idea what the heck that is. I have researched and just don't understand what the information means. I am waiting for the GI team to call me next week.

I have something similar, but no pain. A loop of small intestine is pushing into the area under my stoma, causing a peristomal hernia. It pushes my stoma to the right. Occasionally, I can see the loop pushing up on the left side of my stoma.

Hi, you are new at posting, but not new to the ileostomy, 14 years? Wow.

Please remember details.

Sorry you are in so much pain. I would never wait any length of time for a layman's explanation of a scan, test, results.

Be your own advocate, push them for answers. Get this resolved quickly but ask, ask, ask.

Praying for you, Leslie, that God reaches out His infinitely comforting, healing arms and wraps you up. They are the best place to be! Imagining His healing light all over you and helping you forward from this place of worry. Hang in there!

I am so blessed to have found a wonderful site where I can be me.

1} There is no shame here. Ever. 2} You're entitled to a second opinion, i.e., another doctor or medically trained nurse practitioner or such. A better explanation sounds appropriate. Don't ever just accept one that you do not fully understand. Tell that person so. Have them do it in plain English. Twice if necessary. Don't be confused or afraid. It's your body. Your castle, so to speak. You know when something isn't right in it. I have had my Crohn's since 1975 and a stoma since 1978. {Don't ask.} Hopefully, by now you've gained a solution. It's better to know. Then you can make a better decision. Good luck.