Parastomal hernia support and alternatives for surgery?

I have a large parastomal hernia with my intestine involved. I have been told that it could cause the need for emergency surgery. I wear an ostomy belt made specifically for me to support the hernia. Does anyone have any thoughts on this? My first thought was I wish I had known about how valuable it is to support the abdominal wall. If I had known this three years ago, I wouldn't be in the fix I am in now. I hope someone gets this information before facing emergent ER surgery. I understand a screen is often used on hernia repair. My body does not accept foreign material. I get granulomas instead of healing. So, any thoughts or ideas?

I developed a peristomal lump several years post-op...from coughing, of all things. My WOCN said no hernia yet but my abdominal muscles were weakening. I later found out about hernia support belts from a good online ostomate friend (a true angel). My WOCN measured me for one but why nobody told me in advance still baffles me after 10 years. I talk to many ostomates having signs of hernias and they all say nobody told them of the risks and methods of prevention. It's ridiculous that it's not the first thing we're warned about before leaving the hospital. I can tell you that my lump has improved...still no full-blown hernia and I'm quite active. I wear the belt during any physical activity or when I'm coughing, sneezing, or pushing mucus out of the stump. Sorry if TMI. The other thing I can say; if you're going to try a support belt, be 100% certain you have no protruding intestine. The belts are quite snug and can be the cause of bowel strangulation if your intestines are outside your abdominal wall.

Hi Suzeekew,

Having a hernia does raise the risk of a blockage and emergency surgery, but it doesn't necessarily mean it is imminent or even that it will necessarily happen. You are best to talk to your doctor as well as your ostomy nurse about how high risk you might be, but in the meantime, wear a hernia belt for lifting or work that involves your abdominal muscles, and try to strengthen your muscles if you can. I like to do plank exercises for my abs, and I did ask my surgeon first - she doesn't see any problems with plank exercises. It is common to repair a hernia with mesh; unfortunately, mesh comes with its own baggage, so I can understand why you might be reluctant to go that route, especially if you have a history of a poor reaction to a foreign substance. Check out all your options with your doctor, but in the meantime, just be careful about how much weight you lift and wear a hernia belt.

Laurie

Mark 1070, you have done well with containing your "lump", but both of us needed the information immediately after the colostomy. I had five open abdomen surgeries previous to the colostomy, which had already weakened the abdominal walls. And, once this hernia got going, it continuously got larger. With the intestine involved, it's much larger than a baseball. Your warning about not pressing on the hernia with a belt is disturbing. That's all that keeps me vertical. Without it, I have to hold the peristomal hernia in with my hands because of the pain. That's why my surgeon has stated that I have to be very aware because the intestine is endangered by being in the hernia. Sigh. I will just keep on as best I can until I can't. But, I do think I need to specify somehow that a surgery could be even more dangerous. When I had the colostomy, I developed granulomas all around the surgical site. My surgeon had to remove the granulomas and the absorbable stitches. I developed granulomas in my mouth from oral surgery just recently due to a rinse I am allergic to. Anyway, I really need to have a surgical plan beforehand. I would opt for minimal just to release the intestine, and I would go right back to using the hernia belt immediately if it came to that. Thank you so much for sharing your experience. I'm glad that you have managed well with using the belt. Take care. nbsp

A tiny correction (because I am a pedant)... it is a parastomal hernia. I know this because I have one too.

I saw stats that suggested 1 in 3 people with a stoma will develop a hernia.

My hernia developed about 1 year ago and 3 years after my original operation. I saw a highly experienced hernia surgeon and although willing to perform a procedure, he advised against it.

As Laurie stated, hernia repair mesh does have potential issues in the stoma area, so largely influenced by my surgeon, I decided to do nothing, other than wear a belt.

I use commercial belts that come in different sizes. I don't see a need for a tailored fit. The belt should not have a hole in it.

I put my belt on immediately after my morning shower and it stays on until a couple of hours before bedtime.

I at times do a bit of strenuous work including lifting, or using my chainsaw or lying on the ground working under a car. I have recently considered (but not tried) fitting a second belt just for the duration of these activities.

Regards,

Tom

Getting Support in the Ostomy Community with LeeAnne Hayden | Hollister

Hi Padfoot, thank you so much for your response. The surgeon has said that this could happen anytime because of my intestine being in the hernia and that it would be an emergency surgery. Because of my history, the chances of success would last a very short time. I know that I would want minimal work done and I would wear my peristomal hernia ostomy belt as soon as possible to prevent damaging the abdominal wall again. I will check out my options, but have been told to keep on as I am for as long as I can. Thank you and take care.

OzTomate, how do you wear a belt with no hole in it? Doesn't that trap your bowel from moving? I agree with you regarding avoiding another surgery, unless your life is threatened by the bowel entrapment in the parastomal hernia, which is right beside the peristomal area. I didn't realize there are two words with different meanings. My bad. Yes, you opted to not have surgery. I did, too. But, I have been told that surgery would only be done in an effort to save my life. And, it would be emergency surgery. Thank you for your response. Take care.

Suzee,

When a hernia belt was initially suggested to me, I expected it to be a firm belt with an opening/hole over the stoma. In fact, I posted here to that effect – but later posted a correction. My expectation of a belt hole was to avoid smothering/inhibiting the output of the stoma.

When I began belt research, I found that the Australian medical advice was strongly 'no hole,' but now I can't remember why. That 'no hole' advice was backed up on a UK medical site.

Maybe 'hole' vs 'no hole' relates to ostomy types? But that thinking is not supported by the manufacturer of my belts as they make a range of ostomy belts and none of them have holes.

By the way, on the aspect of ostomy types, I have a urostomy. Here are a couple of sites that explain the different types:

http://stolencolon.com/ileostomy-colostomy-urostomy-difference/

https://www.newbieostomy.com/ostomy-vs-colostomy-vs-ileostomy-vs-urostomy-whats-the-difference/

Regards,

Tom

Thank you, Oz Tomate, for the information and the links. I will be checking them for more information. I appreciate your candor. Shar

I agree, we need to be more educated when we end up with an ostomy. The nurse comes in shows you how to put the appliance on & there you go, that's all you need to know. Had I been told the importance of wearing a belt as everyone else has said, I would not be having to have a hernia repair. I cannot wear a belt because it causes pain, but I was told I have several bowels poking through, I guess that's why it hurts to wear one now. Of course, I have had to research a lot of stuff that should have been told, but the thing is they don't know. Hospitals should hire people who have stomas, who really understand the ups & downs. I had an ileo first, then reversed, then a year and a half later a permanent colostomy. My clothes don't fit, they pull to one side & I am sooooo self-conscious from my protruding bulge. I do have surgery scheduled for next month & pray for success. My hernia doctor where I live sent me to a hernia specialist. I had a hernia at my belly button that I believe I was born with & sometimes I think maybe we should have left that one alone because I was always able to push it back in, but he didn't feel comfortable fixing this one & it being a success, which I am happy that he admitted.

Bottom line, there should be better health givers with a whole lot more information than just telling you how to put your appliance on. I have had my colostomy for 6 years now.