Ostomy Hernia Experiences and Advice Needed

Replies
14
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163
Sturnbull
Feb 02, 2025 3:44 am

Hi been a member about a month and this is my first post. I think I may have a hernia around the stoma and wanted to know if any one else had one and what was done. Have a doctor appointment next week but a little nervous.

Gracie Bella
Feb 02, 2025 4:03 am

I have had a really big hernia at the top of my abdomen. I had it repaired, as my bowel was bulging out and it began to tear more and more. My surgeon put in a mesh which ensures that this never breaks open again.
I have a small hernia just above my stoma and I have to wear a hernia support belt to ensure that it does not get any bigger. My belt has a hole in it where my bag goes through.
I am not supposed to lift anything heavier than 2 to 3 kilograms (which means that technically I am not supposed to pick up our eldest cat who weighs close to 5 kg...). 🤷‍♀️

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Sturnbull
Feb 02, 2025 4:12 am
Reply to Gracie Bella

Thank you for the tips. I sit at a desk so I don't really lift anything. I think I caused it when I did some leg presses at gym. Just trying to get back in shape and not doing a good job at it. I have a band I wear now but by the end of the day it is very uncomfortable. I'm hoping I don't have to have another surgery.

Beachboy
Feb 02, 2025 4:19 am

Hello,

Parastomal and incisional hernias are common with ostomies.  The ostomy itself is a controlled hernia.

My small parastomal hernia developed at 4 months post op.  No one at the hospital told me about this.  They should advised me to wear a support belt and not lift anything.

Now I'm 2 years post op.  My hernia remains small, because I wear a support belt all the time.  Only remove it to take a shower and change the wafer.   You get used to it.

If the hernia is not causing trouble, don't fix it.  Do some internet research about parastomal and incisional hernia repair. 

Get a CT scan to ensure your hernia is not endangering your stoma.  Wear a support belt.  Be extra careful coughing and sneezing.  I firmly press on my belt with both hands when I cough or sneeze (if possible).

When mine first popped up... I freaked!  Then did some research.  Read posts on this web site.  I chilled out.  

Good luck.

Sturnbull
Feb 02, 2025 4:22 am
Reply to Beachboy

Thank you that does help plus not feeling alone with this. I will wear the band more and try not to freak out too much:)

 

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Gracie Bella
Feb 02, 2025 4:34 am
Reply to Sturnbull

I think that worrying about what 'could' happen in the future is not helpful. Take it one day at a time. And try to relax as BB said.

Ben38
Feb 02, 2025 8:50 am

I've had my hernia for around 10 years or so; it's getting quite big now, but I'm lucky—I don't get many problems from it. In my case, surgery is to be avoided in almost every case, as I'm not expected to survive it. As with all hernia repairs, there's always a high risk of them returning; most doctors advise leaving it well alone unless it's causing problems. Even with a hernia, you can still do core exercises; new research suggests it may slow the growth down or possibly make the hernia smaller.

warrior
Feb 02, 2025 11:16 am

If you have been here a month, you know these folks post a lot of good, valid, accurate information. There's plenty more info on the forum section above; if you're a paid member, you can access that data too.

No reason to feel alone. You've got a new family here, kiddo.

Ask, research, educate, learn to become a warrior advocate. 👍

Justbreathe
Feb 02, 2025 1:58 pm

Shock and Fear - Hernias

Seems I frequently see posts regarding peristomal hernias. 

Shock and fear are 2 words that accurately describe me after emergency surgery.  These were followed by illness, pain, frustration and a boggled mind for many weeks.

Immediately following surgery, although information is key, it was by far, my worst time mentally.  My mind was preoccupied with terror and with no ability to comprehend what I may have been told.  At that time my hubby and I were in our late seventies.  My hubby was very nearly feeling the same reactions.  We were on vacation with no other family around. 

Within a few months I sprouted a hernia.

Among the discharge papers, a big red note with fat lettering saying 

-  HERNIA IS QUITE POSSIBLE - DO NOT LIFT - WEAR HERNIA BELT - 

would have been helpful for me and after reading these post many others as well. 

However, many docs say they are inevitable.  jb

 

Sturnbull
Feb 02, 2025 2:26 pm

I really appreciate all of the tips and experiences. My doctor did not say anything about a hernia I found out about them when I Googled pain around the stoma. I will definitely be asking more questions when I see them this week. I too would rather not have any more surgeries. If I can avoid it with a band or belt, I would prefer that. Thank you for all the encouragement here. I have a wonderful support system at home, but they really don't understand what I'm really going through.

 

infinitycastle52777
Feb 02, 2025 3:44 pm

I have a parastomal hernia and I am getting it fixed surgically in May, along with my incisional hernias. Not everyone needs surgery for their parastomal hernias; it just depends. Is it affecting your ability to put on a bag and wear a bag successfully? Is it large or small? Your doctor might have you do a CT scan to check it out, just to see how big it is and where exactly it's at. Usually, according to my surgeon, they just watch it to see that it doesn't become a problem. I am only getting mine fixed because she has to go in to do the incisional hernias anyway, and while she is in there messing around, she said she'd fix the parastomal hernia as well.

Justbreathe
Feb 02, 2025 4:22 pm
Reply to Sturnbull

A support system is invaluable, but you are correct... really, no one can truly understand unless they have an ostomy... it is a whole different world to our support people... they feel sympathy, not empathy, and just want us to be well. We have a need to talk about our situations and issues that only ostomates truly understand... thankfully, this can be done here... jb

SusanT
Feb 02, 2025 5:04 pm

Others have already said a lot. A couple more comments.

Is your belt a hernia support belt? Some belts are designed to hold down the flange or bag but do not support the abdomen.

If your belt is getting uncomfortable, are you able to adjust it? I find I sometimes need to adjust my belt for different positions and activities. You might need a different kind of belt.

I developed my hernia right away, but I had a lot of infection before and after surgery, which is a risk factor.

As others have said, a hernia belt is your best treatment. Surgery is generally avoided as long as it isn't causing problems.

LAD3NV3R
Feb 02, 2025 5:15 pm

Currently have 3 hernias...one at each place I had or have a stoma currently. They are pretty dreadful and my suggestion would be if you don't absolutely require surgery avoid it & wear a daily binder. After 2yrs of fighting the parastomal hernia that's like a grapefruit I'll be getting all 3 of my hernias meshed in the next few months...any tips would be greatly appreciated 😊 btw I did drop 70lbs the last year to better myself & prepare for this inevitable surgery! Not easy when being mobile can be a huge challenge so I support everyone trying to do better & who has experiences to share!

xxxltd
Feb 02, 2025 6:07 pm

Ileostomy, I developed a hernia and it grew slowly. I wore a hernia belt daily; your stoma nurse will measure and fit one for you. I eventually had problems; my intestines moved and relocated under the hernia, followed by surgery and recovery. Avoid at all costs. Terry