Parastomal Hernia

I had my operation leaving me with a stoma in March 2020. Almost from the start I had a Parastomal hernia to enjoy. 

Mine has grown quite a bit and is very uncomfortable, and of course I have to wear a sturdy belt. I'm getting to the point when I may have to get it repaired, I'm terrified that they will have to move the stoma over the other side and it will then become an ileostomy.

How common are these hernias and does anyone out there have any experiences they can share? Has anyone had one repaired and it held? Has anyone had one repaired and did it hold?

Thank you...

  • hi Stevejhb, I've not had a repaired hernia but do have one in my Stomach along with a hiatus hernia. I do have however experience with different stomas. Initial Stoma was a colostomy; had massive adhesions/intestinal issues which meant a major blockage. Six weeks later I was given an illiostomy. six years later I had a partial loop colostomy again as my immune system plummeted with the illiostomy and I had lots of health issues. Physically everything improved after third op. Support pants really helped. I'm lucky in that my husband does the heavy housework and anything that involved lifting. 

    "don't think about tomorrow"

  • Hi Stevejhb

    I had an ileostomy for a year and almost immediately had a parastomal hernia which ended up the size of half a grapefruit. I had a reversal last year and they stitched it up then so I don't know what is involved if they repair it while leaving your stoma there. So, do you have a colostomy at the moment?

    Have you run it past your hospital team to see what advice they have?

    All the best, John

  • Thanks Kath - appreciate your reply... Glad that everything improved physically.

  • Thanks John very much appreciate your reply - yes I have a stoma for life, no reversal possible. I have run this by my team, but I was interested to see how common the hernia is, and was hoping to hear some positive stories of repairs to hernias lasting a long time. :-) All the best and thanks again.

  • Hi Stevejhb, As far as how common I read that at least 40% of people with a stoma will end up with a hernia. My repair after the reversal is holding ok.  It was old fashioned stitching. I had ordinary hernias repaired with the mesh but the surgeon said he wouldn't use mesh for this in case he had to go in again!

    Hope you get it sorted ok