Parastomal Hernia Repair: Success & Techniques - Seeking Advice on Surgery & Flange Attachment

I haven't posted on here for an absolute age, but I have just had a hernia repair in England. Have a look at totalabdomen.com in your research for surgeons. Good luck with everything, and I hope this helps.

Hello 'mrm247' - thanks for your post. The Lister Hospital, in Chelsea, London, is a fully private facility. Which means anyone who wishes to avail of their services must pay or be covered by insurance. They will not accept NHS patients, with absolutely no exceptions. I just called them.

Most people in the UK can barely afford mortgage repayments, keep the family in school and fed and clothed properly, much less pay for honest medical insurance. I wish you had at least told us that in your post.

I was covered by PPP for the first emergency surgery, or so we thought. But since I did not have a GP (we lived in many places worldwide) I did not need a GP, so never registered. Also, being a trained nurse, I treated any minor issues myself. So it turned out I was not covered. Since an emergency with less than 10 minutes until fecal matter hit my heart, the surgeon being extraordinarily kind, continued and saved my life. He put his reputation on the line for me. I shall never forget.

I cried when I called the Lister Hospital to ask if they accepted NHS patients - a very snooty female said, "At the Lister? Oh my god no. We're private, totally private." So don't build up your false hopes when reading 'mrm247' post above. Unless you can afford it.

Hi Alberta.

I wonder what happened with your repair... I just had a colostomy in 2015 and then a parastomal hernia developed (I think... due to the lack of knowledge and non-advice given by the medical pros re using a binder after surgery). This hernia is huge... bigger all the time, a bummer.

I want to know if your surgery was a success and if you got rid of the parastomal hernia, what happened?

I am in BC so perhaps the technology is similar.

Thanks.

Hi Scottie from BC.

I too am hoping that Dennis from Alberta replies and tells us whether he went for it and had the parastomal hernia repaired, if so how.

I have been investigating this subject for more than a year. Agreed, my hernia was caused by not being told that I needed to wear a support for the muscles. These muscles surrounding the stoma get more and more weak the older one gets. That to me is a good reason to leave well alone. But at the rate mine is getting bigger (without even picking up anything as heavy as half a kettle of water), it is alarming. I feel I must do something, as the bigger, the more unmanageable. As it is, I look 8 months pregnant to one side of my abdomen.

Yet an even bigger worry is that the NHS (National Health Service) has a VERY poor record in completing this surgery successfully. Even when they use mesh to rebuild the abdominal wall. One of the mesh (the one with the holes in it) tends to get gut trapped in the holes leading to strangulation and emergency surgery. The other 'bio' mesh, made from animal tissues, either bovine or porcine, tends to shrink. Thus both, even with stitches, are likely to fail. I say that with a heavy heart, as there is no other option that I am aware of.

There is a private facility in London which has a very high success rate on all hernias, but of course, one has to pay for that as it is private. The cost of the op in my case would be approximately £56,000 - I am a widow living with my son who has a good job, but nowhere near that amount of cash, even including our life savings. So the only virtually guaranteed success I am denied on monetary grounds.

I hope that you have better luck than that. But research is worth a million times more than luck.

I have been told twice by two different surgeons that these hernias reoccur up to 50% of the time. Sometimes they get infected too. The news on mesh is not good; what they need is a very strong medium to hold the muscles in place, but it seems nobody has found that material yet.

Hope some of this will help you reach decisions which benefit you.

Best wishes from England.

I have been putting this surgery off for a couple of years now. I don't trust the operation. I had a consultation with my original surgeon and his solution is to make a new hole for the stoma and patch up the hole with the bulge. I don't like the thoughts of creating another potential hernia. I would like to have the existing parastomal hernia repaired. But where??? My bulge is about 1/2 softball, and I managed to keep the stoma in by wearing the NuHope hernia belt all the time except sleeping. If doing something strenuous, I will wear a regular back support right over the stoma (gut) and hope no accident. Mostly before eating.

***UPDATE*** As I stated earlier, I had repair surgery back in March. It has been a long recovery and I still have pain. I can actually feel the mesh through my skin. It feels kind of hard in some areas. The incision seems to finally be healed up, although I do still get occasional small areas where it seems to "blister". A wide area of skin around the main incision is still numb.

One other thing is my stoma now keeps growing longer. Each time I change my appliance it seems to be longer than the previous time. It's now about 3 inches long.

I would have to think very long and hard before going through this again!

Hi Graphx12, I am going to hold off on surgery as long as I can. I just hope my hernia doesn't get any bigger. It's very uncomfortable now when I wear my new Hope Hernia Belt. It's not too bad, but when I take it off, wow! It looks like I am going to have a baby, lol. And I can hardly bend over. My stoma is about 3 inches long as well. Well, best of luck to you.

Just found this very interesting thread. In the UK too. I had an emergency stoma exactly a year ago after ending up with a perforated bowel after a hysterectomy and my sigmoid colon ruptured. I developed a hernia last November. The reversal was supposed to be in April. Despite having a pre-assessment, I was never given a date. My gynaecologist has bent over backwards to help, and my stoma nurse has been marvelous. However, my colon surgeon has been an absolute disgrace. He has continually ignored everyone. He grudgingly saw me in June after I lodged a complaint and said it would take place in August. I had another pre-assessment at the beginning of August but still no date and zero communication. When he saw me, he kept me waiting, talked crap for 5 minutes then got me out. Not even an examination. I can no longer work, which being casual on zero hours is a really bad thing. I can't look for a new job. My current job is very physical, and I don't want to go back after their attitude following last year's surgeries. I had been due to get a contract, but it was delayed due to the surgery then withdrawn because my recovery wasn't as quick as they thought it should be. My life is in limbo, and I've lost potential earnings. The pain is excruciating. The hernia is ginormous. It's difficult now putting the extenders around the colostomy bag, and I'm rapidly running out of clothes that will fit. I have started feeling sick, am tired constantly, and drip in sweat at the slightest movement. My left leg is agony from the weight. My back is murder. And the surgeon simply doesn't care. He's continuing to ignore everyone. My complaint is ongoing due to the backside saving they did after the initial joke of an investigation. I don't blame the NHS. I blame him entirely, and it now feels like he's doing it deliberately. Any advice would be very welcome.

I had 2 parastomal hernias. The first repair lasted 2 years, and the second has lasted 10 plus years. I have never worn a binder after surgery. I found a surgeon that had done five repairs before me. Good luck! I know these are tough. Mine was grapefruit size.

Hi, I have just read your post about your problems with the hernia and ostomy.

I also have had the same or similar experience and can agree it is not pretty. I had a parastomal hernia on one side of my abdomen, of course, the size of my head! I looked six months pregnant from one side.

I did finally get my colostomy reversed and hernia operated on about four weeks ago. I am not a pretty sight on my abdomen but can at least wear regular clothing.

I believe the problem when I first had my emergency colostomy surgery (which saved my life as I had two perforations in my large colon and sepsis) was that I was not given a girdle or binder of any sort.

So naturally, I coughed in the night and being asleep did not put a pillow on my tummy. Whammo - first a small hernia, then bigger and monstrous. I blame the medical specialists (nurses, ostomy nurses, docs, gastro guys) for not realizing that the pressure on the abdominal muscles is huge and bound to bring this on.

As I mentioned, I had my reversal surgery and hernia repair recently, and before the surgery, I called the doc's office and asked if they would have a binder in the operating room for immediately putting on me after the surgery, or would I need to buy and bring my own. His nurse did not know what I was talking about and never heard of such a thing!! The next day, after talking to her doc, she said yes, they would make sure to have one for me in the op room. Thank heaven.

I think that could make all the difference - you must be your own advocate - it is your health.

Do not give up. I still have pain from all sorts of scar tissue but am powering through, and each day gets better.

Hi Tiffany, I was just reading through and saw this. I have a hernia and ileostomy with a lot of pain and uncomfortable stuff I go through, and had 3 surgeries in 7 months in 2017. I pray no more sepsis, it was horrible. But anyway, I'm sorry you have to go through all this and it's 2020 Jan, and I'm hoping you're doing better! I suffer as well and wish it would stop, and I can live without so much pain and suffering like the uncontrollable stuff. I sit and watch my stoma, but anyway, I hope you're having better days! My friend... I know people look at us and say "you look good!" Well, thanks, but again, I suffer and they don't say anything much about it. But anyway, I'm sorry. Sincerely, Victoria. 

Scottie, hi! How are you? Happy New Year 2020. I was just reading and saw that you have been through a lot, and it's kind of what I'm going through. Sometimes I don't know what to do, so I sit and watch TV to try to relax and not overthink and worry too much because stress is so bad, too. Ouch! Anyway, I wanted to say hello. I hope you're doing well. Again, I just wanted to say hi. I don't even know much about you, but that's not important as what we all go through!! Sincerely, Victoria  

Hi hun, I just read this message and I hope you feel better today. I'm going through some of what you're saying and it's no joke. I don't know what to say about doctors; they need to be more up-to-date with post-surgeries. I don't know, I was told to eat anything, but I already knew not to. I retired anyway, but in 2017, I had 3 surgeries, one sepsis, and now my stomach hurts all the time and other stuff. Please pray for me as I will for you, and if you want, email me back. Hope you're doing better. Take care. Sincerely, Victoria.  

A ray of hope! I'm about to have a repair amp; after reading a lot of the other comments, I was beginning to worry, but your comment made me feel better. I'm going to a hernia center that is all they do, fingers crossed amp; powerful prayers it all turns out great. It just keeps growing amp; I'm at a point that a hernia belt aggravates it, therefore pain as well.