Seeking advice on parastomal hernia repair and feeling lonely - Need someone to talk to

Hi everyone. I haven't been here for a while. I have an ileostomy as of last year. I developed a hernia and over the last few months, it has gotten a lot bigger. My surgeon really doesn't want to repair my hernia because of too many complications and the mortality rate. She wants me to try massaging it back in place.

Has anyone had a parastomal hernia repaired? I would love to talk with someone who has. Also, I am feeling very lonely. It would be great to chat with someone in the same boat. Thanks for reading. Pammer

Hey Pammer, I'm not expert on this subject but it seems like a hernia belt could be very helpful.  It was/is for me.  I also think messaging the intestines back to where they belong can't hurt.

Please keep us posted.

Mike

Hi Pammer, welcome back. I read your post about the hernia and I am sorry for your discomfort. I wanted to briefly comment. My friend has a hernia and wears a support belt/wrap and says that it helps. My thought was possibly wearing support underwear such as Spanx or a body shaper. If you have a Walmart near you, they sell different types of support underwear and body shapers that are reasonably priced. It would add some support and you would not have an additional garment around your waist. Just thinking out loud. Take care Pammer and I hope that you find some answers about hernia repair. LH

I recommend you find another surgeon for a second opinion. My peristomal colostomy and then ileostomy strangulated, and it was not good. I'm fine now after two reversal surgeries. NuHope had excellent belts.

Hi, my name is Fred and I have had an ostomy since the 80's. If the hernia is not a real bother, don't let them touch you. Work with it. Hang in and keep smiling and quit sweating the small stuff. Give me a shout if you need to continue to talk.

All the best,

Fred

Getting Support in the Ostomy Community with LeeAnne Hayden | Hollister

Hi, I had a pastoral hernia repair last April. The decision was made to do a repair, as it had gradually become larger over the last few months. I had been feeling unwell for quite a few weeks, having tummy pains and sickness. I thought I'd picked up the sickness bug going around the school, where I am Head of Year. This was causing me to leave work early and go home to bed. My operation date was looming and the sickness and pain were increasing. After coming round from surgery, I was told my hernia was strangulated. This was causing the pain and constant sickness. However, months later, I am now overjoyed with the result. I still continue to wear tight-fitting dresses, as I refuse to allow my stoma to dictate how I dress. I am proud of my stoma, after all, it saved my life and given me a lovely quality of life. Do what you feel is best for yourself. I am lucky to have such supportive family and friends, which does help. Good luck and take care.

Carol X

Hi Pammer.

I too haven't been here for a while. Four years ago, I had cancer of the colon soon followed by secondary liver cancer and I also required a permanent colostomy. A year after my colon operation, I developed a parastomal hernia and this grew over the following three years. Two months ago, I was in the hospital getting the hernia repaired. From what I can gather, about 50% of parastomal hernia repairs fail, so some surgeons are not too keen on carrying out these repairs. I am not sure about ileostomy hernias, you would have to check this out.

My repair was done by keyhole and I was told recovery would take a few weeks. As usual, I have overstressed myself a bit and I am just awaiting the results of a post-op check-up scan. If you go ahead, make sure you take care of yourself afterwards and take your time during recovery, you may need a good few months. I have also been advised to wear a hernia support following the op and I continue to do so. Even with keyhole surgery, my hernia repair has knocked me about a bit, thankfully I am beginning to get back to my old self.

I would certainly recommend carrying out serious research into the operation and getting a second opinion as far as the way to proceed is concerned. Assessing risks is not easy, especially when there are outside circumstances to be taken into consideration. Your surgeon may just have been 'laying it on a bit thick' so as to find out how serious you are about wanting the hernia repair.

I can appreciate the feeling of loneliness and isolation, this is possibly the most difficult aspect of illness and recovery. I make sure I get out at least once a day, often it is the small things that matter most and make the biggest difference. My illness has certainly shaken up my friendships and this can also affect the sense of loneliness and isolation. I am also looking to eat more healthy, which certainly helps improve mood etc., but when tired it is so easy to just put a frozen ready meal in the oven.

Although I may need corrective surgery on the initial hernia repair, I am glad I went ahead. Lovely to be able to slip into fitted shirts again. It's great to get some of my self-esteem back. All I need to do now is take care and be a little more gentle with myself.

Wish you all the best and hope your decision is not too difficult.

Happy to chat more,

Kind regards, Paul

Shortly after my ileostomy surgery, I started developing a bulge - looked like a tennis ball cut in half. It grew slowly over the next few months until a year and a half after my surgery, I awoke to the most excruciating pain I had ever experienced and eventually started vomiting. My daughter got me to the hospital where they had to do emergency repair surgery. Eight inches of my small intestine had pushed out through the "hole" and got twisted. Following the operation, the surgeon told me the "hole" was big enough for him to put his fist through. He was not an expert in this field and told me he put everything back in, removed as much of the scarred tissue resulting from my initial surgery as he could, and sewed me up. He told me the proper way would be to use mesh and relocate the stoma, but he was not prepared nor an expert to do this procedure. This was at my local hospital - I had my initial ileostomy at the Mayo Clinic, which is a few hours away. Now, a few months later, the bulge is back, and I have pain to different degrees constantly. I am very scared I will have to have another surgery. I have not heard of any "mortality rate" from hernia repair surgery. Is this a real issue? Anyone?

I had an incompetent surgeon who assured me that this could be reversed in six months, but later admitted that he did not have the expertise to perform the surgery. He also told me that most everybody developed a parastomal hernia, but had no idea about a hernia belt. He referred me to a university doctor, who did advise me about a hernia belt, which did help.

I am now a year and a half with this problem, and no doctor wants any part of my problem because they don't want to inherit this surgeon's mistake.

Hi Pammer, I too have a parastomal hernia and my surgeon doesn't want to repair it either. I have had mine since approximately a month after my surgery in 1994. I wear a NuHope support belt and have since 1994, and it helps hold it all in.

Feel free to contact me if you feel like chatting.

I have an incisional hernia. My doctor won't touch it either. The hernia will continue to grow but they have a belt you can wear.

Hi Pammer,

Welcome back! My name is Marsha, and I've been on the site (off and on) for about 4 years. I remember you from awhile back.

I'm sorry to hear that you've been having hernia issues with your ileostomy. I've had my surgery for more than 50 years (back from when I was 15....and it was a relief to be free of the Ulcerative Colitis. Although I didn't have problems back then with the stoma, I did have 2 incisional hernias at the base of the scar that refused to heal. As a result, my lower belly has been pulled together, and the site looks like a smile-shaped belly button hole.

About 5 or 6 years ago, I noticed a "white" bump between the skin and the stoma. It hurt when I touched it, but when my doctor suggested seeing a surgeon, I decided to ignore it for about 4 years. And then one day, I emptied my pouch, and all there was was blood, about a pint. When I took off my appliance, the blood sprayed all over my friend's white bathroom. I ended up in the emergency room of a very good NYC hospital, and the surgeon identified the "spot" as pyoderma gangrenosum, which is actually Ulcerative colitis on the skin. I didn't know that was possible. I asked the Dr. about doing a "stoma revision" (because the lower part of my stoma retracts into the skin). He was adamantly negative about doing "anything" that didn't have to be done.

He actually said, "The longer I could cope with the way it was, the better off I was." Hmmm. He's a surgeon who doesn't want to "cut". This doctor came highly recommended, and I've listened to what he said... I also have a very large abdominal hernia to the left of my scar, and it "bulges out" when I do exercises. As long as I'm in no danger of "bursting", I'm not doing anything about that either. Because of my diabetes and the "Systemic UC," which is still in the body even if we don't have a colon, I'm not going to have any elective surgery.

I think you have to be the one to decide just how much you're willing to risk (having more complications) to have the hernia repaired. I did a little research and found out the condition isn't uncommon, but the repairs can actually cause more complications. I would get second or even third opinions from well-recommended doctors whom you feel you can trust. Weigh the results before making your decision. I had a "very simple" kidney stone removal procedure last year and developed severe complications and had difficulty healing. I had no alternative and had to have the procedure, but it's made me more cautious about "elective" procedures. Sometimes, there's a very fine line between one and the other.

As for feelings of loneliness...this is really a great place to come to vent, discuss, learn, chat, and just socialize with others who have gone through or are going through what you are. We all understand... and it also will help you to reach out and help others.

Best of luck,

Marsha