What Is A Complex Incisional Hernia. Living with a hernia

The Story Of An Incisional Hernia

March 17th 2009

It was a normal spring morning. I dropped my wife, Tricia, at Heartland's hospital at 7.30am on my way to work, for her appointment to have what should have been a routine hysteroscopy, which is carried out to check for polyps and abnormalities of the womb by taking a biopsy, using a keyhole procedure.

"Do you want me to come in with you?" I asked

No need. No point. Tricia didn't know what time she was scheduled for and in any case, it was just a really simple, routine procedure. Nothing to be at all concerned about. That's what she said.

Famous last words, and all that.

What followed was beyond belief and until now, beyond words. What she was subjected to was, quite simply, unbelievable, life threatening and life changing. It became one of those awful horror stories that we all read about in the papers, where fact becomes stranger than fiction.

Present day

In this article I will explain what happened to cause my wife to go, quite literally, right to death's door - she was on his doorstep, ringing the bell and death was about to invite her in!

I will also offer some practical tips and advice to anyone reading this who finds themselves in a situation where, one day, they find themselves at the mercy of our NHS system and from a practical perspective, I will be offering much needed information that seems to be lacking on incisional hernias.

Back to March 17th 2009 and I received a text from my daughter, who had gone to the hospital to give her Mother a lift home after the procedure. "Mum is fine. We are about to leave hospital and go home now. x x x" Great. No worries then.

She underwent the procedure, under general anaethstetic, at around 1.30pm and was sent home at about 3.30pm. Before leaving she told the staff that she was experiencing severe abdominal pains. They said this was usual and the pains would pass in a few hours.

I arrived home from work at about 4.30pm. My wife was in severe pain and discomfort. She could not sit or get into any position where she was comfortable. The pains, she said, were cramping pains like contractions and they were increasing in intensity.

We have been married for 25 years and during that length of time together, you get to know how a person reacts when they are unwell. You know them inside out and can recognize every little detail. You just get to a point where you can tell how they are.

I knew that my wife was not well. I could see it in her face, in her eyes, in the way that she was holding herself.

So I put her into the car and took her back to the hospital. It was a tough journey. She had pillows to help her feel comfortable and a bowl just in case she wanted to be sick. Apart from the increasing pain, she was feeling extremely sick.

We arrived back at the ward where she had been originally. They put us into a waiting area with 2 other patients. The nurses had a quick look at Tricia and then told her someone would see her soon.

That was at 5.30pm. They gave her some painkillers.

They said that she probably had some anaesthetic gases left inside her which was the cause of the pain and that it should pass but if she wanted, she could stay the night. So at around 10pm I left because Tricia said she wanted to sleep.

She was still in the waiting area, not even admitted properly yet. But she was insistent that she wanted me to leave so she could sleep. My being there was keeping her awake.

It was to be at 11pm that night when Tricia was admitted and placed on a ward. She was not seen by a doctor or consultant.

Why? Well quite simply because the nurses decided that there was nothing wrong with her, except for some trapped gases. Whenever she asked for a doctor or stronger painkillers, the nurses told her to stop making a fuss, that there was nothing wrong with her.

She asked them "Do you really think I would be here if there was nothing wrong with me? Don't you think I would rather be at home in my own bed with my family than be in here, getting treated like this? Can you just get a doctor to see me ?"

She was repeatedly ignored.

The next morning I called the ward before work. I expected them to tell me that Tricia was feeling much better and that the gases had passed now and that she could go home.

What they actually told me was

"We have told your wife that she can go home because there is nothing wrong with her. She insists that she will not allow us to discharge her though because she is still complaining. Your wife isn't really very good at coping with pain, is she?"

I went to visit my wife that evening.

Up to this point I had not taken action myself because I believed their diagnosis of trapped gases. I believed them when they said that the pain would pass once the gases had gone away.

BY the evening of Wednesday, march 18th (my birthday) Tricia was getting worse. The pain was increasing, the sickness was increasing and now she was vomiting. Her temperature was high, she was developing a large rash on her stomach.

That evening, a doctor finally saw Tricia and decided they should x-ray her to see if they could detect signs of where the gases were trapped so they could decide what to do about it.

BY now Tricia was on strong pain relief and anti sickness tablets.

Before leaving that night I checked that the staff had my contact numbers and asked what time they would know the results of the x-rays.

The following morning, I called the hospital at 11.20am and was put on to a lady who asked me if I could get to the hospital as she didn't want to discuss Tricia's case over the 'phone.

Fortunately, I work just 10 minutes away from the hospital. I was there by 11.45 to be greeted by one of the most wonderful human beings my wife and I have ever met. Sadly, the NHS has very few wonderful human beings, but this incredible woman, Elizabeth Payne, is one of them.

She was the senior consultant whose department had been responsible for treating my wife and, once the results of the scan had been made available, one of the doctors had called her as he was concerned (I want you to keep in mind, at this point, that the wonderful nurses on the ward had formed the 'professional opinion' that there was nothing wrong with my wife except for the fact that "she is not very good at dealing with pain, is she?).

Elizabeth led me to a small office and explained to me that my wife had been prepped for emergency surgery and that she had organized one of the hospital's senior surgeons to perform that surgery. She would be assisting him.

At that stage, her suspicion was that something had been punctured inside my wife, something that needed to be repaired very, very quickly.

My heart sank when I was taken to see Tricia. She was connected to so many wires and tubes and it was totally obvious that what was about to happen was serious. It wasn't until a long time afterwards that I would find out just how serious.

Miss Payne had allowed me to accompany them to the theatre doors, where she told me she would see me in about an hour, once the operation was finished.

She later told me that, due to the severity of my wife's situation, she had not expected her to survive and that Elizabeth was expecting to see me an hour later to tell me that my wife was dead!

So, as you can see, when I wrote earlier that she was standing on death's doorstep, I meant it, quite literally, because as it turned out, that was the expectation of the surgeon and consultant who had been tasked with dealing with a woman, my lovely wife, who was very, very close to death.

Some time afterwards, probably a week or two, when I spoke to the surgeon, he told me that if she had been admitted to theatre much later, she would have died. He reckoned there was probably as little as 10 minutes to spare.

It turned out that when Tricia’s hysteroscopy had been performed, the consultant who carried out the procedure had biopsied the wrong part of her body. He had mistaken Tricia’s bowel for her womb and so, had biopsied her bowel three times.

I am sure you can visualize the consequences but just in case you can’t, Tricia’s bowel now had 3 holes in it and from 1pm on the Tuesday until 1pm on the Thursday, exactly 48 hours, the contents of her bowel had been seeping into her abdomen.

The result?

Septicaemia and Peritonitis, both of which can easily lead to death but when present together, they represent an immensely dangerous and potentially fatal combination. One of the crucial effects of these 2 conditions is organ failure and that was precisely what had been occurring inside Tricia’s body. Her organs were failing and at a very rapid rate. That organ failure is what was killing her.

Tricia was in the High Dependency Unit for 4 days and then she was to be in hospital for a further 5 weeks, during which time instead of getting better and finding healing, her condition went downhill, rapidly.

She was suffering from dehydration and malnutrition. In 5 weeks, Tricia had lost two and a half stone in weight and rather than becoming well, she was physically in a serious condition and mentally, she was becoming withdrawn, depressed and was starting to lose contact with the world around her, quite rapidly too.

Finally, on April 23^rd, 2009, Tricia was discharged into my care, at home, because the senior hospital staff on the ward, together with the surgeons and consultants involved in her case agreed with me, that Tricia was not receiving any actual medical care in their hospital and that she would stand a better chance of recovering if she was at home and looked after by her own family.

I was elated. At last, Tricia would have the chance to be properly looked after and cared for. She needed nourishment, rest and above all 24 hour love and tenderness.

At the same time, though, I was saddened. What sort of world class health service do we have if people lose so much weight, through lack of care and are told they would be better cared for at home?

Over the next 3 months, my wife received the level of care that she needed and my children and I watched as, little by little, Tricia gained weight and confidence and gradually became better.

The whole journey, however, was to take a further 12 months, until August 2010, before she would return almost to normal again. She will never be entirely normal again because she developed chronic pancreatitis and diabetes as a result of the trauma (her hair fell out too) but now, 18 months after that fateful day when she had her hysteroscopy, Tricia is as well as she is likely to ever be and she is, to all intents and purposes, her old self again.

The Hernia

When Tricia was discharged from hospital, into my care, she left with an open wound in her stomach that measured 9inches long and 4 inches wide. It went down right into her abdomen. She had a drainage bag that had to be emptied twice daily and which had to be re-dressed and completely changed every 3 days.

Fortunately, we had the support of our excellent GP and a team of district nurses who were wonderful and, for 7 months they supported us until the day in November when, finally her wound healed.

Along the way, however, Tricia developed what is called an incisional hernia.

Incisional hernia? What the heck is that, we wondered?

It started as just a small bulge, right behind the area where the naval would be and over the course of the next few months it would grow and grow until Tricia looked as if she was 6 months pregnant.

The first image of Tricia’s incisional hernia shows the ‘hole’ in the centre of the stomach and the small lump that has the appearance of a walnut, which is the healed wound area that had been an open wound for 8 months, from march 2009 until November the same year

The next view of the hernia is a full view from the front and from this image you can get an appreciation of the size

So what is an incisional hernia?

If you want a precise medical definition, I suggest you use a search engine, as there are many sites that offer good, clear medical definitions and descriptions.

In the layman’s terms that Tricia & I would use, however, an incisional hernia is what happens after an incision has been made.

When a surgeon cuts through the stomach wall (an incision) there is a weakness in the stomach wall and the lining (the peritoneum) and after the skin has healed on the outside, there is still an internal weakness in the stomach wall.

The bowel then pushes against this area of weakness and pushes outwards, as you can see in the pictures above.

When the incision is made into the abdomen, the muscles are cut and they separate, which is the two large sacs that can be seen to either side of the wound area.

Of course, the hernia that you see in the photographs didn’t just become like that overnight. It took several months to develop into that size. The image above was taken 2 days before Tricia had surgery to repair the hernia.

So, what was it like for Tricia to live with that hernia?

Living with an incisional hernia

Uncomfortable, scary, embarrassing, take your pick over the choice of words. They all apply and if you are suffering from an incisional hernia, you will no doubt identify with those words. It is the fear of the unknown, really - not knowing what you can and cannot do with a hernia of this nature. What will happen if you do this or that? Will everything just suddenly burst open and you will find that your insides are spilling out all over the place!

In reality, apart from the fact that the hernia simply kept getting bigger, nothing happened at all. Tricia was able to function relatively normally. She could drive, cook, shower, shop, in fact, she could do most of what she could before she had a hernia, except for the fact that merely having this great lump in front of you is slightly restrictive.

Confidence was the biggest thing. Whenever Tricia went out she had the feeling that people were looking at her. Now, we have all experienced that feeling at one time or another, the thought that people are staring at that big spot on our face, or our lopsided mouth after a visit to the dentist when our gums have been frozen.

At first I thought Tricia was simply being over sensitive to the fact that she FELT awkward, until I started to pay more attention myself and she was right. People were staring at her.

That was one of THE worst parts because, eventually, Tricia didn't want to go out. What little was left of her confidence had finally been eroded.

Thankfully, when we finally arranged for Tricia to have surgery and have the hernia dealt with, her confidence came flooding back and instead of loking the way she does in the photos above, her appearance changed, dramatically and once again, she looked the way she used to 18 months previously:

To stay up to date on this topic, as I update it and to find out more about:

• Hernia Repair Surgery
• A Brilliant Hernia Repair Surgeon
• How To Complain About An NHS Hospital

Click This Link For Part 2: The Hernia Repair