Who knows about parastomal hernias?

Hi, is there a fellow ostomate out there that knows much about parastomal hernias? 4 months ago, I had surgery for a hernia and at the same time, the surgeon re-fashioned my stoma. Then, after I had been home for 4 days, I got an abscess and ended up with peritonitis and had emergency surgery. Anyway, 4 months later, my hernia has come back. Is this normal, and what is the success rate with a hernia repair? I really don't want to go down that track again. Very confused!

Hi, I had an ileostomy 12 months ago and have a hernia. I have heard that repair is not very successful. I tried all the support garments and belts that my stoma nurse had, and nothing was of any use and so uncomfortable. I found one belt on the web which is absolutely brilliant. It is the Nu Hope support belt. I wear it all the time, have even gone to bed with it on. It is so comfortable and the hernia is no problem now. Hope this helps. Peter.

Hi, I have a huge parastomal hernia, which the docs want me to have sorted - however, it will mean a huge op including a repair to my recto-vaginal fistula and the changing of my loop ileostomy to an end ileostomy. I believe that hernia repairs are only likely to have a 50% success rate (?, please correct me if I am wrong, which I hope I am!), which I assume will be reduced if you already have a hole in the muscle - ie the stoma ?

As to hernia support, none of the ones available from my Stoma Nurse were man enough for the job! In the end, I had to have them specially "built" by the Orthotics dept of my local hospital (not sure where in the world you are? I am in England....so it is provided by the NHS). It is not a pretty garment as you can imagine, but it does do the trick - it is similar to the Nu-Hope garment mentioned previously, but is much bigger and I suspect somewhat stronger!

I have decided that the prospect of all that surgery is too much for me to bear at this moment in time, so hope to postpone it for a year at least unless it needs doing in an emergency. Good luck in whatever you decide, Rachel x

I have had a peristomal hernia and had it repaired on July first. I still have a problem after 2 months. Also, at that time I had a resection (rectum removal). I am still recovering from the surgery. All that I can say is that life is better since the surgery. I do hope that you have a speedy recovery. It is not easy, but it will improve your quality of life. Hang in there and everything will be okay! I hope that you will experience the luxury of not having to use the bathroom ever again. It has taken me a good two months to heal. Best wishes to you. LOL

I had a parastomal hernia in 2004. I remember it well - sick as a dog for 14 hours, taken by ambulance to the hospital. I was truly blocked and had emergency surgery later that day. I spent 3 weeks in the hospital as the NHS gave me 2 free bugs. But I was back to work after 6 weeks. While I was open, they reworked things a bit but steered clear of using gauze. However, in hindsight, I would have considered it. Since then, no repeat, although I did get an abscess in 2006. But this was cut open and drained while I watched, and I was discharged 6 hours later. They think it was caused by an internal body cavity. The hernia was self-inflicted by abdominal crunches, so my doctor banned me from them and exercise in general for 6 months.    I think a support belt may help post-op so that the surrounding muscle can settle and strengthen. Even a cough can make it pop back out.    I think another visit to the hospital for further surgery is very likely, most certainly within 5 years or so.    I have not tried a belt, but some that have give a thumbs up. I avoid heavy lifting now and touch wood, so far so good!

Hi there. I too have a huge parastomal hernia which I was going to have reversed but have since been diagnosed with breast cancer. It was a tiny lump found in a routine mammogram which has been removed. (Just the lump not the whole breast) I will be starting chemo in 3 weeks then radiation after that. Getting back to my hernia looks like it will be put on the back burner for about a year. After reading stories about reversals etc, I wonder what I should do!!! I have had my colostomy for close on two years now. I'm still trying to find a suitable support garment but don't have a very big range here in NZ. Are there any other ostomates here with similar issues that could maybe suggest something. Am very tempted to make my own. PS. I also have a smaller hernia further up on the right hand side so I do need a wide support garment LOL