I have a loop ileostomy and am supposed to book a reversal soon, but I've had issues for the last month and a half since a sneeze suddenly became a destructive force. I've made two trips to the ER, changed pain meds to Lyrica and hydrocodone, and undergone an endoscopy and colonoscopy, including a barium enema X-ray, with no signs of a hernia. So when I mention to the surgeon about a giant protruding lump area to the right of the stoma that hurts to touch and look at during a bag change... he nonchalantly says, "Oh yeah, probably a peristomal hernia." WTF Chuck?? All those tests were supposed to show it to no avail. So I'm confused, uncertain, in pain, and as always, now trying to stay positive and not be fully blown 'who gives a f#$% depressed.' Maybe the reversal surgery will fix the hernia??? More diligence and research required.
Welcome to the more research and diligence site.
I'm sure an experienced member will chime in. All I could say is what I have read from this site.
Some things make sense.
Other things... not...
So if I told you that a stoma is technically a hernia, you might be surprised.
You have a hole punched through your stomach wall lining, allowing your intestine through it to evacuate matter into a
bag. What your doctor says about yours is probably true.
I am surprised all your tests were negative. Can you get copies to read them yourself? The written reports say a lot more than what you are told.
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That is just wacked. You have every right to be angry about this. All those tests they put you through and didn't find anything, and then the doctor just says, "Oh yeah, it's a hernia." They could have found that with a simple CT scan. Painless to go through and much less hassle. And your doctor sounds like a quack. I'd look for a new one.
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I had an ileostomy and a parastomal hernia. My hernia had zero pain. I also had a slightly prolapsed stoma. My hernia was repaired and stoma reversed. I had a colostomy put in on the other side. It's not possible to repair the hernia without reversing the ileostomy. My extensive research taught me that hernias are extremely common and that unless they are severe, then it's not an emergency to have it repaired. I found a large number of people with hernias who just live with them. However, if your hernia is painful, as you stated, then that needs to be looked into.
Seems your surgeon was so busy looking for a zebra that he overlooked the horse staring at him. Sadly, it's not uncommon for a doc to order bunches of high-level studies "to rule out" serious conditions. As @warrior suggested, get copies of the test results. Use the internet for any terms that are unfamiliar. And do not hesitate to seek a consultation with a different surgeon to review your history, current issue, and test results. If you are going into another surgery - reversal - you deserve to have every confidence that the surgeon knows your full story and is not seeing with blinders on.
Living with Your Ostomy | Hollister
