Success Stories with Parastomal Hernia Repair?

I have been reading recently about people on here who have had the parastomal hernia repair surgery and had their stoma sink into their skin/have trouble keeping a bag on, etc. Has anyone had a success story with a parastomal hernia repair? Where their stoma did not sink into their skin? I am about to have this surgery along with incisional hernia repair in a month and a half, and I just want some reassurance that I am not going to have an issue. I already have enough trouble trying to keep my stoma above my skin level, and I thought that was due to the hernia. But if hernia repair is going to leave me worse off than I am now, I am not sure I want it. Can anyone say they had great success with parastomal hernia repair?

Has your doctor recommended having them fixed, or is it your choice because you have them? Be honest with your answer: did they say you need (for health reasons) to get them fixed, or did they say that they can fix them for you and it's your choice? All my doctors have said that they can fix mine, but the long-term results aren't good, so waiting as long as possible is best.

I tend to agree with Alex. It seems many that post on here say the hernia came back… If your stoma is receding, has your doc suggested a revision or relocation? I've had a parastomal hernia for a long time now, but from what I have read, I have opted out of any further surgery unless forced into it. These are tough decisions… Take care… jb

My surgeon said I have no choice but to fix them, especially the incisional hernias. She said they must be fixed because there is a loop of intestines sticking out, and it could cause strangulation. She said she might just as well fix the parastomal hernia while she is at it, so she is convinced she can do both.

I've had a parastomal hernia for at least a year now, but the surgeon only confirmed it when I confronted her several months back. She said yes, she knew, but that they don't tell patients because they will only worry about it. I am not worried about it; I am worried about the costs that may come from repairing it. If my stoma goes into my stomach, I don't have the resources to buy enough wafers to change them every 2 days. My insurance isn't going to pay for that. And they are 50 bucks a box of 5. That would get expensive very fast. So if fixing it means this, then I can't afford it.

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

So getting the surgery is necessary for health reasons; that kind of answers your question right there. I would think if you have a competent surgeon (like one that specializes in this type of stuff), they can make sure your stoma will stick out a bit and not be flush with your skin afterwards. Sometimes you just gotta have faith that everything will be okay and not worry about the “what ifs” in life; nobody would do anything if that's how they go through life.

There are never any 100% guarantees with any surgery, but almost all go well. I'm sure you already know there's a high risk of hernia returning, as most doctors say we have a hernia the day we have our first surgery. As soon as possible after surgery, when the doctor or nurse says it's safe to do so, start doing core exercises for life and keep your weight down. I know the nearer surgery gets, the harder it gets, and the more 'what ifs' go through our minds. Try to do something to take your mind off it as much as you can. Make a bucket list of things you want to do to give yourself something to look forward to.

It sounds like your surgeon knows best. I had mine done on Feb 28, and my stoma did retract, but it is finally coming back out as my surgeon said it would. Today, in fact, I notice it has come back out more—almost to normal. He said I still had a lot of swelling inside, and that is why it did that. I'm thankful because I too was worried about having to change the type of supplies I use. If I had the option to do it all over again, would I? Yes, absolutely. My hernia stuck out so far that my pants didn't fit 🤭

Sorry to hear that. You don't need the additional worry and stress of affording medical care costs.

Are there any charities in the US that could help you with the wafers?

None that I know of.

Mine doesn't stick out that much; that is why I am concerned. It isn't that big, so maybe it's best left alone. I know I must get the incisional hernias repaired, but maybe the parastomal one is optional. I don't know. I think it is too late to ask. It is on the books that both are going to be done.

That is a good idea. I know I don't need to get into the "what ifs," but it is hard not to when I read so many stories on here of people who had trouble with parastomal hernia repair. The more stories I read of people with issues with this surgery, the more I question if that is going to happen to me. But I can make a list of things I want to do to give myself something to look forward to. I will put not being in pain at the top of the list... LOL

I'd let your surgeon know your concerns. Maybe a small revision could be done to your stoma at the same time to prevent problems.

My surgeon is a general surgeon, but she has done all my previous surgeries, including the one that saved my life. I don't know what she is sure about and not sure about, except that my incisional hernias must be repaired.

Never too late to ask; it's your body, and the final decision is yours and can be made up until they put you under.

I don't know your medical people, but when I told my surgeon about my hernia, she said that any time I want to get it fixed, they have specialists to fix them, and she'd get me lined up for a consultation whenever I chose to. Both she and my oncologist recommended waiting as long as I could because the long-term success of stoma hernia surgery isn't very high. Now, if you're a person who lives a basic sedentary lifestyle, I'd say get it fixed. But if anyone is very active at all, I'd say wait as long as possible… which is what I'm doing.

Since she must have surgery for the incisional hernia anyway, it makes sense to me to attempt the parastomal hernia at the same time. You'd sure hate to need a second surgery later if the parastomal hernia causes problems.

Worst case, it fails and the hernia returns. But the surgery will have still accomplished its primary mission of fixing the incisional hernia.

G-Day IC,

If you don't get them repaired, then the hernia that you said is a loop hernia could turn into a strangulated hernia. That's when you will have pain—real pain. We are now talking about your health, not how much it will cost. Health is priority number one.

Regards, IGGIE

I just had a peristomal hernia/prolapse repaired with mesh mid-January. My recovery was difficult. Lots of discomfort. My stoma has been retracted like a funnel, and I have had nothing but problems because of the retraction. There is not a wafer made on earth that will fit. My funnel stoma is sewn tightly to my abdominal wall and is not everted at all. So, it is not possible to turtleneck the stoma. Effluent leaks behind the wafer, and I am a slave to it. My skin is perpetually burning, macerated, itching, stinging, etc.

Be certain that you need to repair this. Ask your surgeon directly how she or he will form the stoma to ensure that it everts sufficiently to fit the wafer. How many of these procedures have they performed?

In my case, I may not have any choice but to irrigate. When one door closes... Good luck.

Do you mind if I ask if you are overweight? I have noticed that overweight people have the biggest problem with stomas that retract to below the surface.

IGGIE

I have a retracted stoma and am at least 30 pounds overweight. I also have a parastomal hernia. Time for me to diet and exercise. Thanks for the reminder.

I do trust my surgeon. If she thinks she can do this procedure without causing me more problems, then I am willing to let her. I just don't know if she is aware of the problems that can occur with pouching after the procedure.

I'm somewhere in the middle of sedentary and active. I do go to the gym and now have an exercise bike at home. Of course, for 4 weeks after my surgery, I will be sedentary because I won't be allowed to do any exercise or lifting. She said after the 4 weeks, though, I can go back to doing all the equipment at the gym. Even the lifting ones. Which I was skeptical of, but she seemed pretty sure that I'd be able to do those even if they weren't able to fix the parastomal hernia. She said as long as the incisional hernias were repaired, I would be good to go.

Yeah, that is what I think the surgeon was thinking. Since she is going to be in my stomach anyway, she might as well try to do both.

That's the incisional hernia that has the loop of intestines sticking out of it, not the parastomal hernia. I know I have to get the incisional hernias repaired.

Well then, I am in for it. I am overweight. I have lost 75 pounds since stopping taking a medication called Zyprexa. But I am still overweight. I keep working on it, though. And I am trying to get my weight down. I weigh less now than I have in about 20 years.