Debating Parastomal Hernia Surgery: Seeking Advice

Hello everyone,

I was diagnosed with UC at a very young age. Since losing the battle of saving my large colon, I have had an ileostomy since 2016.

Since 2021, I've developed a parastomal hernia and I have been debating whether to have the operation to get the mesh put in and get the hernia repaired. I really can't decide and I am struggling to make this decision.

Over the period, the hernia has become large but it's not causing any blockages or major issues. Odd leaks here and there, but I have been managing with the support belt and vest.

Is there anyone here who has had the parastomal hernia before and did you get your hernia repaired? How has it been since the op?

I would love to speak/chat with someone if you have already been through this situation before. Please get in touch to share your experience or message here.

Thanking you in advance.

Kind regards,

Vimesh

My peristomal hernia was repaired 12 days ago at the time of this writing. Both it and an incisional hernia on my original surgical site were repaired as part of my stoma reversal.

This new to the process, all I can share is the last week and a half since surgery. My surgeon said he had to do "a lot of tissue manipulation" to do the right quality of job. If you look at my profile pics, you can see a shot of my surgical sites, it's quite the collection of staples. 😉

I was told that it took a layered suture approach underneath all that to give me a strong repair. His goal was to not have be back on the table in a couple of years because one of them had returned. 

So I can't comment on durability, but I have high hopes. I can tell you that there's no shortage of pain and discomfort as I heal. I could request a refill of the stronger stuff, but I'm making do with Tylenol and Advil because it allows me to work. I was back at work on the 5th day after surgery, luckily, my work is centered on my computer... No lifting or exertion required. Even so, I've worn my abdominal binder everywhere but the shower, so 23.5 hours per day. Not sure how long I'll need to wear it, I'm sure at some point I'll need to stop wearing it to allow strength to return to my abs.

I go in next week for my follow up appointment and to get these staples removed. This is what I can share off the top of my head, so you have any specific questions that someone 12 days into this adventure can answer? 

I had parastomal hernias. I have had them stitched, which did not work. I had mesh surgery about 2 1/2 years ago, and that did work, but it is coming back a little because it's my own fault for lifting over 25 pounds and pushing furniture, etc.

I was told to leave my hernia alone unless I got an obstruction or the bag would not stay on because it is a huge operation. Plus, at the time, I was a bit overweight and they wanted me to lose a little.

It turned out I did get an obstruction, so they had to do surgery.

Hi Rodr24

I am scheduled to go in for reversal surgery on October 25th, reversal of my colostomy, and I'll be given an ileostomy. Do you mind if I ask what you had reversed and how your bathroom movements are, as I am pretty scared about the whole thing. I'm 57 and feel too young not to try the reversal.

P.S. I've heard some horrible stories about the ileostomy output and diet.

Amac

Ireland 🇮🇪

Thank you so much for sharing your experience.

A million-dollar question is - should I wait until it causes obstruction/blockage? Reactive approach. Or, should I go ahead and pre-plan the operation and opt for a proactive approach?

Which option would be better?

Stories of Living Life to the Fullest from Ostomy Advocates I Hollister

Thank you for explaining in detail, and I genuinely appreciate you sharing your experience. I hope you make a full and speedy recovery.

May I please ask -

1. Was your parastomal hernia surgery planned or an emergency?
2. If it was planned, then at what point did you decide to go ahead with the surgery and why?
   Thank you in advance.

I'm 64. This was quite the ordeal, but my outlook is that the colostomy saved my life. Still, I'm glad it's gone now. I'm still healing.

For the first nine days I had almost no output. I think it was day 5 when I had some diarrhea come through, then nothing. On day eight, getting a little worried, I called in. They said to take some miralax and call if nothing happened by day ten. It was day nine when it started to cut loose.

At first, it was long, thing, stringy output, what's called post-operative ileus. I was having to pass stool basically any time I went to the bathroom. After a few days and some doctor-recommended fiber intake, I started passing a much more normal stool.

Here I am, day 17, and I still have two smaller movements each morning instead of the single one I had before all this started. Good fiber intake means they are firm, and after visiting with my surgeon and getting all my staples out, pretty his guidance it should get back to a more normal daily movement over the next couple of weeks.

I was a caregiver for my mother who had an ileostomy, that's a liquid output always. My mother did well with it, but since her entire colon was removed, it was hers for life.

I can tell you that she didn't like having it, but  that it wasn't overly difficult to care for. She got to a point I had to do her bag changes, so I guess that helped prepare me for what I went through.

Here's something I held onto through it all. It saved my life. It sucked, but without it, I wouldn't be here to complain. In that way, it was an amazing blessing. 

I wish you the best on this part of your journey. Put gratitude first, and it makes the rest a heck of a lot easier to handle. 

Thank you for your kind wishes.

The hernia repairs were both done in conjunction with my stoma reversal, so they were planned. I went ahead with it because my prognosis was good and I wanted to get back to some semblance of normal again.

My surgeon said that recurrence is common, but that there are things we can do to increase our chances of not being part of that statistic. I'm doing everything he advised. 😉

Parastomal hernia repair (Laparoscopic Sugarbaker method - mesh) 9 weeks ago. Was in hospital for 3 days. 78 years old and going strong. Going on a 2-week Caribbean cruise Dec 1.

Thank you for taking time out to respond to my concerns. Since it’s been almost 3 months to your surgery, how does it feel now? Is it better than living with hernia? Did you have any blockages prior to the op? What made you decide to go ahead with the op? Was your op planned or had to be carried out in an emergency situation? I would really appreciate as much info as possible as I’m really struggling to decide whether to have the op or postpone as long as possible… I wish you all the very best for the cruise and most certainly enjoy it.. 

Thank you so much for your response. I really appreciate you sharing your experience. 🙏😊

Wishing you all the very best.

My operation was planned due to frequent blockages and more and more problems with getting wafers to adhere to my skin for more than a day or two at a time. I am thrilled with the results.  No more blockage, no more bag leaks and to top it all off I now have a flat Tummy again!   I have absolutely no regrets.  Best wishes with your decision.