Living with a Parastomal Hernia: Seeking Advice and Information

So I have one! How come I was never informed about it coming? Could I have prevented it? Now what do I need to know?
Will it get bigger and bigger? Will I wind up in the hospital because of it eventually? Will I sneeze one day and rupture it and make it bigger and cause an emergency?

These are all good questions and I have no answers.

Here is my short story about my lifelong buddy "Hairy the Hernia"..........this is all I know about it, ....... not much.

First off, it was a surprise to me when I realized I had this "lump" on my belly. It came so slow and without any strange feelings. No pain or anything, it just showed up uninvited. This happened about 10 months after I had my (urostomy) bladder and a number of other things removed to save my life over 10 years ago. (I guess you can tell the operation was a success.) The somewhat concerning thing is, over the last nine years it has slowly grown to the size of a half of a large grapefruit. It gets more difficult to hide it with loose clothes. I'm getting a bit lop-sided. I really don't mind it as it seldom turns out to be in the way or any such thing. I still work out most every day and it doesn't appear to mind it.....we must have an arrangement of some kind....don't hurt me and I won't hurt you! I was still under the care of my surgeon, and he said "That's no problem, just don't get fat." I haven't.

I have a few hernia belts, but for the life of me, I can't find any information which says they are of any real value. There appears to be no scientific proof they do anything, except in my case, I feel more secure wearing it. I always wear it the day I change my appliance (pouch) as I think it makes it adhere better than if I don't wear one. However, these belts were not designed for comfort so I usually don't last the whole day wearing it.

Let me (and the rest of us) hear from any of you who know more than I do about hernias and belts and the like. I would like to learn more for my future so I know what is going to happen. Thanks for any help in advance.

Jim

None of my doctors even said I had one. I read that I had one on my last scan. Unless they cause issues, they're not too worried about them since we're very prone to getting one since a stoma is technically a hernia to begin with. I don't worry about mine too much, it just makes me look fatter than I already am.

AlexT, I think we are both in the same boat. It is just that it keeps slowly getting bigger and I wondered where this was going to end up. Yeah, I'm not panicking... yet... lol.

Jim

Maybe next Speedo season I'll worry more about it.

Stoma nurse told me I had a little hernia, which I did not know, and I am not quite sure where it is? Patrick.

After 3 surgeries in the same spot, I finally also developed a hernia. The first day after the 3rd surgery, I had to sneeze and I felt an excruciating pain right to the left of my ileostomy.

13 years later, my hernia has grown the size of a big breast. Many people make remarks that I eat very well because I appear to look fat. When I tell them that I eat very little, they laugh me off. I am not going to tell every Tom, Dick, and Harry that I have an ileostomy since 1986.

I can no longer walk long distances because my hernia starts hurting. The typical reaction of others: "Oh, you don't like hiking."

Coughing is a nightmare. If a cold turns into bronchitis, my hernia grows even more.

I wish I could go for surgery, but I am living all alone and I would need help at home for 2 to 3 months. And since I have nobody to help me, I will have to wait ......

Plus, I don't want to go to a hospital before this pandemic BS is over and things get back to normal.

Hi Jim, it always amazes me, the number of people who become ostomates without being warned beforehand, or at least immediately after surgery, about the risk of hernia. I was warned, and after surgery, was given some gentle exercises to do to strengthen my abdominal muscles to help prevent a hernia from happening. You mention that you work out regularly, and I'm wondering if that might have been what caused the hernia to begin with and might continue to exacerbate the situation. Are you doing exercises that would strain your abdominals?

The jury does still seem to be out on whether hernia belts really work. I could never really tolerate them just because they are so uncomfortable. I also work out regularly, but I am very gentle with my abdominals, a much reduced abdominal workout than what I did pre-ostomy, and the weights I use are also lighter. So far, three years later, no sign of a hernia. I know it seems that doctors are very reluctant to do hernia surgery if you are functioning well. So, best you can do is try to prevent it from getting any worse. Best of luck.

Terry

Thanks for that, Terry. The hernia didn't come from working out because I was not working out then. I have since (when Covid started) started working out (mildly) to strengthen my whole body, but originally to strengthen my stomach wall. I'm 80 years old, but in very great shape. Luckily, my doctor thinks a number of his 50-year-olds would be lucky to have my body. I do suffer from carpal tunnel and arthritis in my hands, which I do exercises for every second day. On the odd days, I do a workout for my upper torso and do the lower on the even days. Research "Growing Stronger" as I do a modified routine I developed from that. I'm very heart-healthy so I am not worried about shoveling the snow on my 120-foot driveway. I just take my time and if it is a large accumulation, I have a snow blower. I live in Central Alberta, Canada.
Jim

It sounds like you are doing all the right things and being smart about it. Good for you! All that snow shoveling would be a pretty good workout!

Jim, I have just had a big operation to fix a parastomal hernia and spent 2 weeks in hospital, but I am now in a very good state of repair. Don't wait until it gets too big.

Alex T. of Nebraska nailed it, folks. Is anyone listening? He wrote:

"Since a stoma is technically a hernia to begin with." This is the bazinga, folks. Stop being surprised you have one.

Be concerned yes, it is growing and how to handle it or slow it down. I don't get why everyone is surprised they have a hernia growing out of your side. Your stoma ruptures through your stomach lining. Ask your doctor, or ostomy nurse to confirm this. It's your stoma "side effect" folks. (pun intended)

What I haven't heard about are the crippling or other effects if this "bulge" and what long-term effects of it are.? Now that is something worth talking about.!! We should address this. Like will this thing actually swallow up the stoma in time? (highly doubt it since the stoma is stitched to the stomach wall) or will your stoma retract b/c the size of it, like a frightened turtle's head?. (highly doubt it, but isn't that a cute vision?)

My two cents input: wearing the appliance belt, since 2016 keeps the bulging to a minimum. It's only 1 inch thick, secures to the four tangs on the wafer itself, and adds great comfort and support, ease of mind, knowing the wafer won't blow. I truly believe if I hadn't started wearing this belt, my "side boob" would look like the Alien, rearing its fugly head, from the same movie.

So I will post this as: yes, a stoma equates to a hernia. Yes, I believe you can control its "boob-like" growth. Yes, not sure of future complications. Yes, deal with it. Here. Now. 3,2,1 Go. Warrior

--Afterthought-- of course, I could be swinging at strike-outs on this thread and totally full of.. poop, I'm from Jersey, so forget about it.

I have a parastomal hernia. It has been repaired once but a year later, it returned. I have a urinary ostomy that I have had for 51 years. I only have one kidney. The doctors said the stoma needs to be moved but because they don't know how much ureter is left, there may not be enough to connect back up. So I live with it. It is between the stomach and bowel and if it ruptures, it will not be a good thing. I have pain with it - feels like a Charley horse cramp.

The research I read said these types of hernias are common.

I find there are days when my hernia is really large and other days when it is smaller. I am not getting any satisfying answers from my doctors.

Re: All your questions I have the same and the answers I get are basically, everyone is different. It is hard to predict.

When my hernia gets larger, I lay on my back and very gently push and rotate the intestines back in. This seems to be working just fine, but I am always worried that something could pop. Any info on this? Best, Arlen

I don't know much about them except most doctors aren't too worried about them. Myne doesn't bother me, just makes me look lopsided.

Yes, you are so right about changing systems. I am just letting off steam. I am still angry about having this surgery. No one explained to me what this surgery was. Only I needed it to save my life due to precancer cells in the colon which was very sick. Radiation was another choice I was not given any choices, my family made the choice for me. Thanks Alex for setting me straight and stop acting like a spoiled brat, which I never was. I was in shock waking up and finding a penis on my stomach squirting crap. I knew nothing about this surgery even though I suffered with UC no one ever mentioned the possibility of this surgery.

I can see how going in and then coming out with an ostomy could be a real shock. But remember, you're probably still above ground because of it.

I had a parastomal hernia with my ileostomy. As time went on, it got larger. Then finally, one day while I was at work, I felt a pop and didn't think anything of it. A few days later, I was throwing up and couldn't stop. I also had extreme, what felt like, stomach pain. My small intestine popped through my hernia, causing issues. I saw a colon rectal surgeon who was very helpful and didn't just pass me off. In October of last year, she took down my ileostomy and drained my hernia. I now have a colostomy and I couldn't be happier. But if I had known what damage the hernia would have caused, I'd have taken care of it a long time ago.