Hernia with Ostomy: Surgery or Live with a Belt?

This is my first post and all has been well since my colonoscopy in April ( my CEA marker is down to 2 after being 160 prior to surgery!).

My stoma "sits" upon a tennis ball sized hernia when I stand up. I now have a hernia belt which flattens the hernia bulge and seems to be a fairly good solution. Can a hernia in this position be fixed surgically? When I spoke to my surgeon she said that things were going so well for me that I should really ask myself if I wanted to take the risk associated with any surgery to fix this vs living with the stoma belt.

Has anyone had this surgical fix to a hernia in this position?

Thanks. 

It can be fixed. The issue is how long it’ll stay fixed. We are very prone to hernias and the success rate of long term success is what is at question. Now, if you’re the type of person that’s gonna have it fixed and then have a very non physical lifestyle, you may be fine. If you’re gonna be fairly active, like most people tend to be, you raise the risk of your fix not lasting too long. Every doctor I’ve seen has told me to wait as long as possible to have mine fixed, as long as it isn’t causing any issues. So, I’m waiting. 🤷‍♂️

Well put...Good reply. I'm waiting too. 

I love your doctor!

Hi sunset,

You've got a bad deal going on there. The hernia can't be directly behind your stoma, as there's no abdominal wall there, just your bowel... so this is a tricky one. It means your guts are trying to force their way through the same hole your bowel is going through. That's different from other hernias that form along the incision or adjacent to your stoma. Those can force loops of bowel to stick through your abdominal wall... but yours will be trying to force your stoma through your abdominal wall... which is not a good thing.

I'm no surgeon... not even sure if I spelled it right... but if it were me, I'd start contacting the most talented abdominal surgeons on the planet and getting my ducks in a row in case I needed help very quickly. I certainly wouldn't let the local surgeon down at the closest hospital get anywhere near me... but in an emergency situation, you usually don't have lots of options... or time. I'd at least talk to 3 or 4 of the best and get THEIR opinions on the situation... and go from there.

;O)

Stories of Living Life to the Fullest from Ostomy Advocates I Hollister

Thanks for taking the time to reply to my question! I'm not going to do anything quickly as it's not too bad and I can easily hide the bulge with the belt and by dressing appropriately, but if you told me this is an easy fix with little risk, I'd probably go ahead.

Thanks Bob, I'm very close to a big regional hospital that does several stomas a day at the Cancer Centre so I presume they're pretty familiar with the options. But I haven't asked them yet as I thought I'd get some info from people who may well have gone through this specific repair as a patient first. The hernia bulge is directly under the stoma which protrudes from the top of the bulge. So it's not behind the stoma- it's underneath the stoma. Does that make a difference?

Hi sunsetter,

Yes, that helps clarify and makes your hernia much more normal! It's good that you have a surgery center close by. Interview each of their abdominal surgeons (or them together if they work as a team) and see what they say. There should be a good consensus on how to proceed since they work together and know each other, but that could also be a bad thing. I'd definitely hear what they had to say, but also contact another surgeon who specializes in abdominal surgery outside the group for a sanity check. If that surgeon agrees with their plan, you're probably okay. If not, you have some homework to do. When it comes to hernia repair, you need a surgeon that specializes in abdominal wall surgery, not stoma creation. The hard part is always how the abdominal wall is repaired, not so much how the stoma is formed; that part is pretty simple. So find out how the surgeons at the Cancer Center would fix it, then go see another unrelated abdominal wall surgeon and bounce what the Cancer Center surgeons are suggesting off him or her. You'll get good insight this way, as well as peace of mind that you're making the right choice and using the right people! Let us know how it goes!

;O)

Hi SS, welcome to the site. Pay attention to the color of your stoma, as Bob was saying. They can put pressure on the bowel and block blood flow, making them go pale or gray; then it's time to see a surgeon.

And if it turns black... it's too late.

;O)

Ditto

I am no medic - but a number of years with a colectomy [ileostomy] has ensured that one becomes 'informed'... so I feel that Bob's observations should be well noted.

[And to iterate, your situation would seem to me not to be the 'wait' situation whereby other intervention delay may be prudent or assessable differently.

However, please note I am no medic [and thus my thoughts are but my personal thoughts, from a lay patient] - notwithstanding this, I urge your wisdom to - at the very least - seek a second professional opinion from a clinician surgeon whose profile is pertinent.

An independent surgeon who specializes in abdominal wall reconstruction, in my humble opinion, may serve you well... and may also allow one to assess the 'consensus' - but may also offer an alternative perspective to consider - and if the surgeon is open, he/she will explain the methodologies/techniques in detail. Don't be afraid to ask questions [no matter how silly one may fear our own thoughts to be - you know how your body feels inside and as such - [for me at least] - peace of mind comes with true understanding... no side step from full transparency.

Please come back to the forum in the interim and share prior to the elected procedure you elect to 'run with'... We are batting for you.

Good luck - and don't leave your research too late - fate favours those who are prepared! [even in an emergency!]

Best Wishes

Jayne.

I'm also waiting and mine's pretty large as I've lost weight so it's more prominent.  I'm super self-conscious about it, but not in a huge rush to get it fixed.

Hello,

I have the same kind of parastomal hernia as you.  A bit of small intestine is pushing into the area occupied by my colostomy.  I had a CT scan.  My surgeon said it looks OK.  I just keep a close check on stoma color, and wear a support belt all the time, even sleeping.  I  see it sometimes bulging up on the left side of the base of my stoma.  I was a little freaked out at first... would it push through?  But it comes and goes.  Probably related to eating affecting the small intestine.

Just be sure a belt will push your hernia in.  This is called a reducible parastomal hernia.  

If you can't push it in anymore, then you have to really watch your stoma carefully.  Called a non-reducible hernia, this occurs when the muscular ring holds the intestinal loop tightly, which can lead to swelling and strangulation of the bowel.  

Like others have posted, if your stoma changes color to gray.. it's an immediate medical emergency.  Your stoma is suffering strangulation. 

I use Nu-Hope Corp belts.  High quality, comfortable, with many options.  I have 2, 3, and 4 inch wide belts.  Mainly wear the 2 and 3.

Hi I am glad to hear you recommend this hernia belt. I ordered one from my medical supply company but it is a 6 inch and I feel like I am wearing a straight jacket minus the arms of course. I think a smaller width would be a much better choice. Meeting with my surgeon 12-2 to discuss hernia surgery.

I'm a small guy.  5' 6" 170 pounds. 4 inch wide is barely tolerable around the house.  But really holds my Ostomy in.  

I discovered I can buy 2 inch wide Nu-Hope belts on their website.  When I called them to order... they told me of a web site where I can order any Nu-Hope belt I want, without a prescription.  Pay for it myself..  but they are not expensive.  I fought my medical supply company for 4 months trying to order some Nu-Hope belts.  Bought them myself and had them in a few days 

The Company is: 

Parthenon Corp.  1-800-453-8898

They also have Ostomy news and information. 

Thank You so much Beachboy! I will be calling this company tomorrow!!!

Let us know how it works out.  I want to ensure my belt purchase experience was not out of the ordinary.  We need all the help we can get.