Worried About Possible Hernia Above Stoma - Seeking Advice

Hi everyone! I read somewhere that hernias are very common for ostomates. I'm currently waiting to see the doc (gotta wait on that dang referral) but I have a bulge right above my stoma. First time the doc saw it (it was about 2 months ago) he said it was not a hernia and I was not worried about it and now I sent pics and he said it might be a hernia. The bulge has gotten bigger and my stoma grew too... I used to cut my bag at the 1 inch mark now I'm at 1 and 3/8. I'm really worried and freaking out so I thought I would take to the site because all of you are really nice and have helped me through so much. Also, when I lay down it goes away and some days it pops out more than others. I'm a worrier and have super bad anxiety which I am aware of and really try to control it but it's getting the best of me right now. In the past I tried many, so many, belts to try to prevent a hernia but none fit me well, I have a short torso and since surgery lost 52 lbs so I'm on the thinner side now. I have a colostomy and am 5 months post-op. Any advice until I can see the doc?? I walk 2-3 miles a day and have been for some time and sometimes with output, I do have pain but only sometimes, I guess when it's thicker. Ugh, I'm so worried now...

MoeMoe, there are many people on here that have dealt with the dreaded hernia. Try not to stress too much about it. You have a Dr. appointment, so wait and see what your options are. I am sure others will jump on and give you their experiences. I just want to acknowledge you.

Howdy MoeMoe,

I have a permanent colostomy.

About 4 months post-op, I noticed my stoma got larger and was noticeably pointing toward my navel. Also had a medium-sized mound under the stoma. Visited my surgeon. Had a CT scan. Yep... Peristomal hernia.

A bit of my small intestine is pushing up at the side of my oblong stoma, which shows up as a large bump at my stoma's base and causes the stoma tilt. Looks like hell, but comes and goes. Doctor said not really a problem... but if I get pain or stoma changes color to grey, go to the emergency room ASAP.

My stoma can swell up huge, then deflate to a smaller size. It can stick way out, then recede. Depends on what I eat, how active I am. I sometimes wear a Nu-Hope 3-inch wide support belt which flattens out my hernia. Comfortable and perfect width for a tiny guy like me.

Now at 1 year post-op, my stoma is bigger in diameter. I cut the maximum hole size in my wafer/flange. I use a moldable barrier ring I place against my stoma at the base. The ring is a real time saver and comfortable. With the ring, I don't have to cut the wafer hole exactly to fit my stoma. I cut the wafer hole bigger and the ring seals against the stoma.

What you're experiencing is normal. There is no evidence I've found that wearing a support belt will prevent a hernia. Your ostomy itself is a controlled hernia.

If you experience unusual pain, output blockage, or stoma color change... go to the emergency room at a hospital. Do not go to an urgent care facility. I get slight, brief pain when passing thicker stool. Only happens once in a while.

Peristomal hernia repair is usually not done unless it is causing major problems, or the hernia is really huge. Surgical success rates are low. Recurrence happens a lot. Moving the stoma to the other side of your stomach usually only transfers the problem. Even a successful repair can cause other trouble, like uneven skin surface texture causing wafer leaks.

At first... I was pissed. I hated the hernia and my large, protruding stoma. But really... it's just cosmetic. There are other ostomymates who deal with real tough, ongoing problems. Leaks, skin damage, pain, allergies, cancer, arthritis, more surgery, digestive diseases, and partners who turn tail and run away.

Like Popeye said: "I yam what I yam."

Hey MoeMoe

 

I had my ileostomy last June and initially had a lot of issues with swelling and complete blockages. My stoma side of my abdomen sticks out about 3-4 inches farther than the other side and they initially told me it was just the swelling and it would go down and be at the level of the other side. Unfortunately, 6 months later, while everything else has calmed down, I still have a massive lump on the stoma side. It is a large parastomal hernia and is extremely unsightly to me. I cannot hide my appliance under clothing at all as the hernia actually sticks out farther than my bust. Add to that my stoma itself protrudes even farther and will get bigger or smaller over the day. I do not have pain and have not had a blockage since things settled down post-op.

I have seen a specialist and they will do the repair but... that's another major surgery and it's only been 6 months since the last one. They use mesh to repair it but eventually most people will herniate again eventually as a stoma is a hernia. It has gotten larger since the original surgery and I struggle with how awful it looks sticking out through my clothing like a third boob but, I am going to wait on getting it repaired until it causes an actual problem or until it's been much longer since the last surgery. The specialist says it's not an issue as long as it's not causing pain or blockages, it's just part of having an ostomy unfortunately. Don't stress about it, your specialist will probably tell you the same thing.

 

 

Very well explained.  

And definitely not a complication I ever thought about.

Take care.

How to Manage Ostomy Leaks with LeeAnne Hayden | Hollister

Technically, a stoma is a hernia, so everyone on here has a hernia. Now with the stress relieved 🤣🤣🤣. I have had an ileostomy for 25 years. I'm a plumber, I have 7 kids, and 11 grandkids. I have had a hernia for 20 years (not a good thing to brag about) and have had 4 hernia repair surgeries. I finally learned to take at least 8 weeks of gentle healing and PT after surgery, always wear an 8” Nu Hope hernia belt with a central hole, and study the mechanics of lifting. I have finally made it 3 years without a hernia PTL. And there's still no guarantee. But I believe the belt is the key, and it helps with how often I have to change my pouch. My original surgeon told me I should be on a 10-pound weight lifting restriction for the rest of my life. Although not practical, it's probably sound advice.
Good luck, I will be praying for you.

Cplumber

Sounds like one to me.

Thank you, everyone, for sharing! I appreciate all of you so much! Getting this colostomy has got to be one of the hardest things I've had to go through emotionally as an adult. Just when I think I'm getting used to all of this, something new happens and sends me into a spiral LOL. Hopefully, the referral will go through soon and I can get checked out. I thank all of you for being so quick to respond and candid in sharing your experiences. I appreciate you! Gonna drink some tea and try to relax my brain 🙂

So glad you benefited from the responses you have received. I too am a worrier, and this site and all the folks on here have helped me “deal with it” for the last couple of years. I have an ileostomy and a parastomal hernia - kinda looks like a third boob. Sometimes it isn't as large as other times, and I figure it's kinda like the “old days before my ostomy life.” Sometimes bloating from gas or whatever tends to expand the belly - think it may be the same with a hernia. Fortunately, I have no pain from it, so I don't stress over it. Occasionally, I will wear a belt, but it is not comfortable after a while. My best bet is to wear skinny pants or jeans - they hold everything in place comfortably. Best wishes - jb

Yes, sounds like a hernia... Mine started with a small bulge, now I look pregnant even though I lost a bunch of weight through my ordeal! I got my hernia from a terrible cough that wouldn't let up. I am also a worrier, and I felt really scared about getting a strangled bowel from it. My surgeon assured me that would be rare (disclaimer, this is not medical advice, so obviously if you have pain with your hernia, see your doc!), so I felt better about it, and it really hasn't caused me any issues except it's unsightly to me. Sometimes I wear my custom hernia belt if I have a cough or know I will be active that day. Mine will get repaired during my reversal in January, but my surgeon said he won't use mesh. He said it might return later, but if I walk every day and keep the weight off, there is less of a chance of it returning. Try not to worry, you will be OK! Best wishes!

I definitely feel much better today and all the responses make me feel much better about my situation. Thank you!!

I am glad you are feeling better! Oh, and yes, mine also fully retracts when I am laying down. When I'm up, sometimes it's bigger than other times—depends on what I've eaten, etc. But the wound nurse said it retracting when you lay down is normal. And my stoma has definitely gotten bigger as the hernia is pushing it out more and more. Take care and happy holidays!

I wonder if the stoma will stop getting bigger…. Mine used to be small like a button, now it's like a 1/2 dollar. So you can get a hernia even after you get a reversal??? Hhhmmm, so even with a reversal you aren't really “clear” from the likelihood of a hernia. Wow, so many questions I have for my doc now.