Hernia Growth After Ileostomy: Seeking Advice and Experiences

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317
Sunshine Girl
Apr 16, 2023 12:02 am

I have read 📚 as much as I could find about fellow ostomates and hernias. I understand that for most, it's not a big deal.

Mine has grown significantly since this past December to the point that people are asking me about my "baby on the way" 🙃 and I look 9 months pregnant! Now, I've named my hernia! Lol

Has anyone had a hernia this big? I'm hoping for a reversal and hernia repair in 2 weeks. Should I be concerned that a general surgeon is not on the team with my colorectal surgeon?

w30bob
Apr 16, 2023 12:20 am

Hi SG,

Hernias are not a big deal if they're not getting bigger. If they are getting bigger, it can be a very big deal. Bigger means either the opening in your abdominal wall (that your intestines are popping through) is getting bigger, or more intestine is pushing through the same opening than before. Neither is great news. If the full diameter of your intestine manages to pop through your abdominal wall, the bowel may become trapped and pinched (they call that incarcerated). And then the bowel can be strangled by the abdominal wall, cutting off the blood flow in that section of bowel. At that point, the bowel can die and you're in seriously deep trouble. I won't tell you how that can end; you can use your imagination.

"Baby on the way" size sounds serious. How big was it when your doctor last saw you? If significantly bigger, call your surgeon (or the surgeon on call) and let them know what's going on. I assume you're wearing a hernia belt 24/7, but if not, do so immediately. Seriously, don't mess around with this stuff; call them. Better safe than sorry.

;O)

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Sunshine Girl
Apr 16, 2023 10:00 am
Reply to w30bob

Thank you so much for helping me understand the difference. I kept thinking my situation was not like what I was reading. The pain is increasing, the food that can pass through is lessening, and yes, the size keeps growing.

Notified surgeon, offered pictures, surgery in Cleveland 5 hours away... surgeon wants me to try to make it another 2 weeks on very soft food. I will put my belt on and I will try to do it! (And I will definitely get to the local ER if anything changes!)

Thank you so much for taking the time to write. Sending sunshine your way! :)

Hisbiscus
Apr 16, 2023 4:52 pm

Hi, I had a very large hernia; in fact, they fixed three of them. I had a hernia where my old loop ileostomy was and then another hernia where my end ileostomy is. Then I had an umbilical hernia. It was an open surgery done with mesh. I, like you, was worried that the colorectal surgeon was not going to be in the room with the general surgeon, but where I went at the Cleveland Clinic, the general surgeon works in the digestive disease part as well, and my colorectal surgeon sent me to him. It's been two years since my surgery. I've had no issues yet, but a small hernia is forming at my ileostomy site, and I attribute that to me not being diligent about not lifting over 20 pounds. That's the whole thing. After surgery, you don't want to ruin what they fixed. Shame on me! I've been lifting heavy bags of laundry, etc. I must learn to take time and lighten the loads.