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

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2010surgery

Hi Everyone!

I would like to keep the conversation going on the topic of parastomal hernias and the repair/success of surgery. I am hoping to get more info from others and restart this important topic. I had my surgery in Hamilton in 2010. My bulge is complicating how well my flange stays attached to my skin, plus it exaggerates my belly. Is your stomach still flat? There have been many advances in surgical procedures, so I am hoping that chances are better nowadays for successful operations. I would prefer to have the repair done at the existing opening, but not laparoscopic. I think open incision gives the surgeon more room to correctly stitch and insert the mesh properly. All the arguments for and against have been heard, and also "best leave it alone", but I want to go ahead and get my stomach gut fixed. I am 75 and too young to look old. Thanks to anyone for comments!

Dennis;

Past Member

I had complications with the mesh used in the repair. I had an open incision. I had the bio mesh fail and get infected with a staph as soon as they put it in. I guess mileage varies.

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Bill
Hello Dennis. Thanks for keeping this subject going as so many of us suffer with parastomal hernias.
I decided that the risks of trying to put it right with more surgery, seemed to outweigh the inconvenience of trying to cope with it. I must admit that I was shocked and disappointed at first when I had a huge swelling where once I had stomach muscles but I was determined not to let it get in the way of enjoying life.
I hope we get a lot of replies and comments to this post as I would also like to know how other people feel about this issue.
Best wishes
Bill
tpntiff

I'm going through the same issue but with the leakages and swelling is the least of my troubles.

I have already consulted for surgery over the course of the last eight months as I don't want the wrong person touching me. I had a delay because I was required to have an EGD flex done to be sure of no surprises. But since the scope, my pain has intensified, I have persistent nausea lasting around the clock, and now I can't really eat/drink. I don't really eat solids and live on full liquids which is a lot of work to get enough nutrition on a daily basis, let alone when nothing goes in it makes my kidneys scream, I have been getting jaundice on and off, and my pain management is not really management at the moment. I don't know what to do they just keep telling me to go to the ER but I don't want to get another infection or be told that nothing is wrong. These people often don't understand severe GI issues. And I have no more existing veins for access to nutrition, guess you'd say I'm at stage 4 of all this as every time I need nutrition/fluids I'm threatened to have another central line placed or PICC or whatever else which to me is infection and death waiting as I've been septic more than I care to mention with seizures, pneumonia, empyema, heart issues, etc etc.

I had a basic hernia repair in 2009. It went bad and was unable to poop for forty days. It was all moving backwards, I was diagnosed with colonic inertia, colectomy followed. And so did more and more failed surgery. I then got Short Gut Syndrome and was told I needed a jejunostomy. But I ran away from them as I have seen how nasty that would be and how fast I would die with it. So now 2 years of ton and two years of hospice later... I graduated from hospice but still here and still suffering. Sorry for so much info but I am really lost in this situation and would appreciate any advice you may have. I like to collect as much opinion and brainstorm as much as possible as this is major stuff and I'm broken. I even am considering double transplant consultation. Since that could be my last hope... But we'll see, right??? Thanks for reading. Pray for me.

tpntiff

BTW, I have a permanent ileostomy... Parastomal hernia around it. It's truly evil.

 
Living with Your Ostomy | Hollister
2010surgery

Hi tpntiff, you look too good to be broken like that. Easter is coming with prayers. Have a happy one.

2010surgery

Hi tpntiff, you look too good to be broken like that. Easter is coming with prayers. Have a happy one.

Past Member

Hi TPNTIFF; I too have a parastomal hernia. I have one about the size of a softball or a little bigger. When I take my hernia belt off, they want to do surgery. Also, I have a urostomy. I'm not a very good speller, so bear with me. When I first had cancer, they took my bladder and prostate out. I lasted 5 years before I got my hernia. He told me, "Don't be surprised if I wake up and move my stoma to the other side and close the other one." I said, "Wow, then I could wind up with two hernias very easily." So, I decided to hold off as long as I can. I wear a Nu-Hope hernia belt, and that holds it in quite a bit. But he said if I hold off, don't lift anything over 5 pounds, so I am being very careful. But he said if I get a lot of pain and get nauseous, go straight to the ER. If you don't wear a hernia belt, get one. They do help. I am a Christian, and I will be praying for you. I take pain pills. It constipates me, so I went on the computer and found this product called Poop Doc. Man, it works great. I could not get along without it. It's all natural. God bless, pray, and hang in there. Auttoman

Scottie

I have a large peristomal hernia due to coughing in the night one time after my emergency colonoscopy a couple of years ago.

No one at the hospital or in literature told me that I should wear a binder, or anything short of holding a pillow over your tummy when/if coughing. Well, I was asleep and when I woke up I had a bump under my stoma.

This has grown over the past year and a half to a size larger than a big grapefruit.

Obviously, very awkward for clothing, and even though I wear a hernia belt, this is still a huge protrusion on one side of my abdomen.

I now have been given a chance to have the ostomy reversed and the hernia dealt with in that operation. I am suffering from a lot of anxiety about this and whether to go ahead.

Wonder if anyone has had this done, and with success or what happened.

I did ask the surgeon if he would use mesh, and he said no, due to infection which he felt was a sure thing with the introduction of a foreign body like mesh.

I hope that someone can give me their take on this. Thanks.

tpntiff

Thanks for the compliments but this is an old picture. I have long since lost my teeth from throwing up so many years (working on implants which takes time), dropped more weight etc. I will update it as soon as I can get a decent picture ...

Thanks for the message, Auttoman, I am glad to hear that you can manage well with the belt. I wore binders and belts, too.

To update, I had an EGD/scope through the ileostomy, both ends, and they found a problem even deeper in/higher up in my guts than what they originally thought. So now he's bringing another specialist in-house for the surgery. In other words, it doesn't look good and I'm probably going to go ahead and check into the hospital tomorrow evening. I have run out of bags as I went through 38 in just two weeks, I also have run out of meds to cope, not to mention, I am not tolerating anything.

My daughter has a really big concert tomorrow so I am going as soon as it's checked off the list. I just can't lay here as I feel worse every day and I know that doing nothing is more dangerous. They already told me to go in.

Please pray for me. I am very scared and have been so sick the past two years. Blessings to all of you, Tiffanie

Past Member

Auu

Past Member

Hi Auttoman here; good luck and be brave. If you can, I will be praying for you. I'm new, didn't know how to work the pitcher thing. Hope I can figure it out sometime. LOL. Good luck and God bless.

GraphX12

I had my second hernia repair (in 2 years) about 5 weeks ago. The first one was an emergency and no mesh was used. Six inches of my small intestine pushed out through the hole and got kinked, blocking everything. Can't describe the pain.

This second one had grown to about the size of a grapefruit – even though I wore a hernia belt. The surgeon recommended surgery since according to her it would be a matter of time before the same thing would happen as with the first one. This time mesh was used. I have to say that the pain has been greater this time around than the first. I assume because of all the sutures needed for the mesh. I had an issue with a slight infection in the main incision for about 3 weeks. Seems to have cleared up.

Would like to hear from others with hernia repair:

How soon after surgery can you start wearing a hernia belt? My main incision is still very sensitive and I am very cautious not to let anything rub on it. The plastic left side snap on my appliance belt lays directly on the incision so I keep a pad under it for protection.

Will be praying for you Tiffanie!

Past Member

Newly registered today, I am both glad to find people in similar situations and in awe of your courage and spirit at keep fighting on. Will be thinking of you Tiffanie in particular with prayers.

I'm a Brit, forced to live in the UK since my beloved husband died a few years ago. Up until then we had lived in about 14 countries (he was in aviation and spoke 9 languages to native level). But I only speak English. So came back home to UK very reluctantly. It is more like downtown Baghdad than the green and pleasant land I lived in before.

We were living in Geneva when it all kicked off. One Sunday evening killer pain down low, slightly to left, tried to slip off to bed unnoticed but hubby spotted me and we soon realized it was an emergency. Agonizing drive to Geneva University Hospital. They decided what I had was a ruptured pocket in part of a diverticularized large colon. Had to be removed very fast. Result is peritonitis, like if your appendix bursts. Woke up in between delirious nightmares in intensive care. They got most out and had 6 antibiotics and morphine for pain. And a colonoscopy. Stayed 15 days and nights.

Discharged even though bad infection in scar, no belt offered, poor hubby was beside himself, Taken on a new job only 6 weeks before all this. 4 days after being home he went out 'for pizza' and never returned. He had the genetic suicide gene, his aunt killed herself at 33. But nobody told me that until after he had died.

Back to UK-NHS (National Health Service) has been destroyed by government to make way for the new EU system. Little did they know we would escape before that. But still trying to cut the cord so the NHS is pretty much on its knees, lack of money medical staff and too many aging population.

I had 4 dates for the Hartmanns to be reversed sent to me by post. I turned up was being prepped each time, each time it was called off for lack of a doctor to do it and I was sent home. I pretty much gave up at that point. Was being treated for PTSD for hubby's death, and clinical depression.

Had a small bump come up to the left of the hernia about 5 years later, went to see a specialist (took 3 months), he kneaded my gut like it was bread dough. Next day a bump to the left the side of half a watermelon. I could not believe my eyes. I looked 7 months pregnant but only one side. They said that most hernias end up with a parastomal hernia, and research proves it true. The mesh they use is useless.

Keep trying to find a research group who will use the brand new discovery graphene, 1 atom thick, stronger than steel. Determined. Documentary online somewhere. That would hold in anything, but so little research into this subject as it is seen as "distasteful" about poo etc.

2 days ago woke up to another quarter of watermelon so now only one quarter is almost flat. Very hard to keep the pochette glued on as I can't really see the opening. Another disaster 2 of the antidepressants they put me on virtually doubled my weight. I did not notice, hate mirrors, lived on a farm in a small cottage miles away, no living friends. Pharmacy sent me repeat meds every month. Never noticed my size ballooning. Only went out for groceries.

Went through not eating, being told off as stoma would not work, had no interest in anything after losing my man. Then tried salads, again told off, had to have some carbs. Just no interest whatsoever in food from then until now. Yet still feel like Shamu with a watermelon on my tummy.

My conclusion after extensive research is that the mesh is essential, but what they use is not up to the job. 50% of mesh repairs fail. Very few attempts at correcting the parastomal hernia work, unless they are tiny. And muscles get lax with age. It's catch 22

Reason is unless stoma pulled through a certain stomach muscle at op, it won't hold. Yet that muscle is very weak in most women in particular.

My grown-up son says I must tackle this once and for all, so now we start again with the rounds of "specialists" to see what can be done, if anything.

Best option from research is a support belt. I tried that, with a hole cut for the colon pochette, (they could not get the hole in the right position so it never worked, and a support belt (twice) without a hole.

Stoma nurse pulled it so tight, that discharge could not get into bag and squished out all around - total chaos, clothes, hair even shoes. This happened TWICE. So I gave up on belts.

I think the only time a belt will help is if you don't have any openings in the abdomen, so if after the reversal of a stoma I would wear one, to lessen the risk of hernia and to support stoma. But that is the only time.

Going to ask the specialist this time if he will remove some of the intestines, even most of them, if it makes it easier. I barely eat now, relying upon Kefir probiotic homemade and supplements. Still don't lose weight. Even going to ask for weight loss surgery (Bariatric).

Now I am Shamu size, here they think it is because you are a lazy fat cough potato. I am in agony from something else and cannot even walk from the bedroom to the kitchen. How the heck am I supposed to walk and exercise ?

I am a natural redhead, Titian, and redheads generally, if natural, feel at least twice the pain of any other tissue type. Sounds stupid but fact. Most doctors don't even know. You can google it.

This is my final attempt to get this sorted out. If they can't or won't help I will take things into my own hands. My son is grown and does not need me anymore and I have had a good life compared to many.

Next stop a pain clinic- and assessment for surgery, but it will not be for weeks or months I am sure. Meanwhile we plod on.

Sorry for hogging the board but wanted to get it all out there so you see my position. Who knew a parastomal hernia could be so huge? I am wearing maternity clothes. THAT tells it all. Plus it is evil-much more gas at unexpected times, then liquid them constipation. I can't stand that for the rest of my life, it's no life at all. And that is what I will tell the surgeon. Honesty is the best policy. Besides, I am only a number to him.

Love to all from England. My thoughts and prayers are with you all.

Past Member

PS Sorry for so many typos - it's coming up to 3:00 am here, can't find a pain-free position to sleep so found you on the web. Bit more tired now, sleep meds don't work anymore, but I will try again now. Blessings to you all. Erica in England.

mrm247

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.

Past Member

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.

Scottie

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.

Past Member

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.

2010surgery

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.

GraphX12

***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!

Past Member

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.

supermeguk

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.

Maried

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.

Scottie

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.

NewlifeVictoria

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. 

NewlifeVictoria

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  

NewlifeVictoria

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.  

Pinkie pooh

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.

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