All this started when I was only the age of 15 and my father passed away at the age of 43, my aunt was told that there was hereditary colon cancer in the family and that it would only affect the men so unfortunately I was never tested.
In May of 2012 I had enough of not being able to control my bowel and persistent cramps regardless of what I had eaten and I was told by friends that I should go back to the doctors and ask then to investigate I DID, I had my first colonoscopy and then they found hundreds of polyps and there was nothing they could do but give me a colectomy.
This was a horrid place to be in as I had biopsies taken and didn’t know what was going on, my best mate took me to visit my aunt where I told them about this condition and what to expect. My aunt was very worried as my father died having this operation.
I was given a genetic councillor and we talked, she advised me to see a specific professor who dealt with my condition and his name was professor Dion Morton at the Queen Elizabeth Hospital. He was very reassuring to me and relaxed me. It was then that he told me what he was going to do take my colon and join it up to my rectum and re-plumb me so I would go to the toilet normally, having taken the decision, my bed was booked and in June of 2013 I took myself to hospital.
June 2013, I woke up in intensive care with doctors around me and a little scar yahhh was my first thought. It was all over, oh no I had a anaphylactic shock and they had started the operation and had to stop, so I had to have tests to see what I was allergic to and this meant me having to go to another clinic and have tests. This was at the chest and allergy clinic in Birmingham, they put little dots on my arm and then put a certain drug, 0.1% of the drug I was allergic to. My arm swelled and the doctor looked at me and said that’s just 300ths of what was injected, you will never be able to have another operation.
After hearing this news I took myself back to the doctors and she said we will monitor you and if we need offer you palliative care the thoughts that went through my head was not nice — why me? And I am only 37.
After collecting my thoughts I was given another appointment with Professor Dion and he asked me to see the gentleman who would be administering the anaesthetic. Mr. Adam Hill informed me that I would be having an anaesthetic that they had not used for some time and it would be harder for the surgeons and my op would take more than 6 hours.
Did I care at this point? I knew that not having my colon removed would 100% mean I would have bowel cancer.
November 2013 came round fast and before I knew it I was in hospital again and in ward 728 with lots of people around me having crones and never having heard about FAP, including some doctors and nurses I felt like having a poster above my bed explaining.
Down to theatre I went and was nervous and anxious but all the people around me reassured me and kept my spirits up including friends and partner they all knew this would be a lifesaving operation and guided me. I knew that I would be at the mercy of all the doctors and nurses and not being independent I didn’t want to have to rely on people, but had no choice. The emotions that went through my head was — Would I recover and what if the same happened me as it did to my dad? I wrote a will and handed it to my friend and told her that all should wear blue and no crying. Celebrate that I had got as far in my life as I did. This was the most heart breaking thing to do and I did it with tears in my eyes.
I woke up from the operation in intensive care I had an epidural and was still in pain on day two. They moved me and I was sat up out of bed in a chair ready to see my visitors. I was in intensive care for 3 to 4 days and then moved back to the ward that I had originally came from, 728. I was given a pca machine that I could administer morphine to myself — oh my, no pain.
Things went wrong, my bowel had stopped working and I was being sick and vomiting. They had to give me a nasal gastric tube and rest my bowel, I then had to have tpn — this is a food through my neck. I encountered a horrid nurse who asked if my family was related — no I am not inbred, thanks silly cow. I had infections and problems with my lungs. Then one night I went to the toilet and couldn’t move, the pain was excruciating. I had what’s known as a collection or fistula and had lots of ct scans. I had 2 drains inserted in my abdomen and they were painful. One nurse who came down with me to have the second drain fitted, said I thought he was performing a liposuction on you.
I had to go back to have a ct scan and had the drain moved. They nicked my bowel and I had faeces coming through my belly as well as my rectum, great. I was showed how to flush my drain. Countless times they thought I would have to go back to theatre, but Professor Morton wouldn’t allow it — saying it was too dangerous.
I got on very well with the doctors and found my sense of humour was back. I asked one doctor, Mr. Pinkney, with a straight face “Did you do a belly button realignment and gastric band on me?” he replied “No why?” — I said I can only eat a little and I have lost weight. I lost all in all 20 kg, wow. Doctor Pinkney and myself had a very good rapport. He would enter the ward and say hello you and we would giggle.
All in all I was in the hospital for 2 long months, missed Christmas and New Years. On January 14th, I came home and still have a drain in my left side that is my Gucci. I had lots of time on my hands in hospital and Facebooked people with my condition, made lots of true friends who kept my spirits up. Including Todd, who calls our bellies Frankenbellies, because I had over 40 staples and horrid scar.
I know I have a lot more to deal with as they found polyps in my duodenum and removed a desmiod tumor, but with the support from friends around the world, near and far, I can deal with whatever life may throw at me. Thanks for reading this and spare a thought for us on Febuary 28th, World Rare Disease Day.