In September 2015 I almost died of a parastomal hernia which had been trapping my bowel over the previous six months or so. A Stoma for a colostomy, Ileostomy or Urostomy creates a weakness in the abdominal muscles when the stoma is formed
I had my Ostomy surgery in mid 2012. The day after my Mother In Law’s funeral. Almost immediately the stoma receded and I had immense trouble getting a system to fit. This is usually the first warning sign of a parastomal hernia. It look many months of the Stoma Nurse, my Ostomy Support Groups on Facebook and myself to brainstorm a solution. But it was never right
Over the next three years I had horrendous pain near the stoma. In 2015 I was in and out of hospital for bowel obstructions repeatedly. Having the dreaded Nasogastric tube inserted to decompress the bowel
August 2015 the long anticipated wedding of my best friend’s daughter arrived. My son and I stayed with his fiancé in Sydney and we feasted and had a wonderful time before and after the wedding
I had bought a special teal jersey dress which had an attached coat front as I was so conscious of my swollen tummy. But had no idea what was about to occur. A few days after the wedding I had a small really small fish burger my son cooked. And I belched before I had eaten more than a few bites. My son tried to get me to eat it but I just could not. The next day we returned north. Myself to Lake Macquarie and Chris to Wallsend
A few days later Chris and Gen came over as usual on a Saturday to help with my food shopping. By then I was barely eating. Though they bought a Jamie Oliver Lemon Pie to tempt me. After they had been there an hour I laid down on the bed to try to hide the waves of intense pain from them. Soon after I started vomiting disgusting brown stuff. Chris was running around trying to find something I could throw up shitty vomit into. No luck! I had only moved into my little cabin a few weeks before and did not have many things there yet. In the end he used one of my new Corelle cereal bowls. We have not used it since!
They eventually talked me into staying with them in case I needed to get to John Hunter Hospital. On the way I asked them to take me to Emergency. They quickly found me a wheelchair and the Triage nurse took one look at me and somehow managed to find me a bed
I will not go into the details in case something similar happens to you. What I will say is I panicked. And I do not give up easily but I just wanted to find a ditch somewhere and crawl away and die. I had already sent Gen and Chris home as I did not want them to witness anymore of the horrendous suffering. Massive waves of pain like my Stoma area was being ripped apart. Alternated with vomiting noxious bowel contents. Almost asphyxiating on them as they had not inserted the right size NG tube. And they had not turned on the suction. So basically I was vomiting myself to death as my large and small intestine were kinked inside the very small area of opening behind my Stoma
I had one on one nursing care for over eight hours. Dreadfully, dreadfully ill. Four or five days later one of their top private surgeons operated on me as an emergency and he did an unusual procedure whereby I had a scimitar shaped wound under the devices I wear for the Colostomy. And under the wound and in the abdominal wall he inserted MESH
Two years later I have a Drop Foot, weakness in my legs and trapped Femorogenital and also Ilinguinal Nerves. As well as a trapped Pereneal Nerve. This causes horrendous abdominal pain. Hours on end every few days. Much like when I nearly died in 2015. I have been Cat scanned. No obstructions. No hernia. It is the MESH. It bonds with anything near it. It traps nerves and severs them. It causes horrendous injury to so many people and yet it is still being used today
I was fortunate to see a Professor of Neurology who admitted a lot of my issues were likely the mesh. That is highly unusual as there is usually a conspiracy of silence and of intimidation of patients. A few weeks later I saw a Pain Specialist and he confirmed nerves are trapped. He gave me a drug cocktail which remarkably is helping the nerve pain in legs and abdomen. However I will need breakthrough pain meds and Surgical Ablation of these large nerves yearly
In 2015 I asked if the mesh was safe to use. Even when I was readmitted to Hospital with sepsis a week after I had returned home, the surgeons were not saying anything about the mesh. Then on a Saturday a youngish British born surgeon came in for the second time. He sat on the bed and said he had a very bad feeling about this. He said these things go horribly wrong. He was very very strident about getting it reversed.
After he left I burst into tears. I had been through a really traumatic event. A very painful surgery and was facing a removal of mesh and a bigger op to repair hernia? I returned to my son’s to recover the next day. With three months of antibiotics. A week later I saw the stoma nurse and the surgeon who operated on me. He asked why he had not been informed that I had been readmitted with an infection
He then examined my wound which had quite a bit of infection draining still through areas that had opened to release it. He reassured me the infection was below the mesh as the wound was so deep. So no issues. Yet he arranged to come in for my next checkup on a Public Holiday. I saw him on the ward which was also highly unusual he also said I could stop the antibiotics
It took six months to recover properly from the surgery and infection and then I started having similar waves of pain to the left of my Stoma. Where the mesh is. Long story short the mesh has caused horrendous pain and suffering. It has cost me my ability to be as independent as I like to be. I am fiercely independent by nature. Hate with a passion being seen as ill or different in any way. For over a year I had to use a walker to get around. Was even contemplating giving in and getting a wheelchair
The Nerve cocktail of Cymbalta and Lyrica in low doses is working miraculously. I can walk again. Still cannot stand for long periods. But the improvement is nothing short of life changing. My memory is much better. I am sharper now after reducing the huge doses of Lyrica I was on. What is surprising to me is that I had no idea how much pain I was in. My son knew. He caught me in an unguarded moment. And was horrified of what he saw on my face. The Neurology Professor was right when he was brainstorming why I was having trouble walking. Imagine being in so much pain you just cannot walk. It’s astounding even to me
I have recently joined some proactive groups on Facebook and their blogs. Things are changing. New Zealand has banned all mesh. Senator Derryn Hinch is supporting banning of Transvaginal mesh. The next big wave of Lawsuits against the Mesh manufacturers is going to be Hernia mesh like mine. I will be joining the class action lawsuits as the ONLY way to stop this is to hit them where it hurts
Unfortunately what we have discovered is that a lot of younger surgeons do not know the older methods of operating without mesh. It’s a nightmare for so many already affected people and we need more visibility to protect others from having mesh. It is possible to have surgeries using “own tissue”. If one can find an older surgeon skilled in this
My mesh is unable to be removed now. No idea what the future will hold. Any bowel obstructions I do have to go to Emergency as this is really dangerous. However the freedom after over two years of agony and weakness has fostered in me an embrace life attitude. Because we do not know how long we have here. We should not waste a second of it. Be brave. Embrace life head on. Instead of saying “why me” I say who else can I help with this problem? Who can I save from this disaster in the making? It works for me. I am quite content with my life now. Acceptance of my condition while fighting to protect and support others is key for me. Everyone is different however.
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