Life without my stomach
Emma O'Connor opted for radical surgery to avoid the risk of getting a deadly cancer. One year on, she's sure she made the right choice
Tuesday 27 November 2007
I must have been laid naked on the operating table, green gowns draped all around me, tubes inserted into my body, anaesthetising me, my body completely still and my mind blissfully unaware of the events that were unfolding around me. The walk to the operating theatre had been dreamlike; I was sober and acutely aware. When the nurse and I met the anaesthetist, I couldn't help myself and I asked him to look after me: "Will you be there when I wake up? Good; will you reassure me because I am really scared, you know? Thank you."
As when a loud noise wakes you unexpectedly in the night, I awoke startled, initially unaware of the world and the time that had passed. I'd been dreaming. Seconds passed, and the reality of my surroundings became clear to me. Like someone wiping the mist from a steamed-up window, my mind played catch-up and I remembered that I was in hospital; that I had spent the last few hours having my stomach completely removed.
To be honest, I had thought I was going to die on the operating table. I truly believed it and had come to accept it. With my wakening came a storm of positive feeling. I was alive and I knew I had work to do.
In November, it will be two years since I received the result of a genetic test that would change my life. I tested positive for the E-cadherin gene and so discovered that I had the same gene that has plagued my dad's side of the family with a rare form of stomach cancer. It is such a deadly cancer that by the time it makes itself known to its host, the individual has no chance of recovering. It is a slow and painful loss of life.
I have a large extended family and, tragically, many have died as a result of this stomach cancer, some as young as me, at 27 years old. It was for this reason that, in 2006, I had surgery to completely remove my stomach. This was the only way to escape the now-90 per cent chance of my dying young from stomach cancer.
People say it must have been a difficult decision to make. But it was as if there was no choice to be made. I did not even consider that there was an alternative to surgery. Of course there was an alternative, but it was just too harsh to contemplate.
I have been without a stomach for just over a year now. I spent 10 days in hospital following my surgery. My time was marked with several physical milestones; one by one the tubes were removed, medicines were stopped, my epidural was taken out...
Apart from these physical milestones, it was truly an emotional roller-coaster. I was so relieved and amazed to be alive that I seriously questioned whether I was in fact in heaven, until Chris, my boyfriend, pointed out that surely my heaven did not include the strange old lady who lay in the bed next to me. He was right; I had indeed survived and I was happy.
Still, there were times when the 10 days I spent in hospital felt like an eternity. I shared a ward with some very sick people and I listened to some sad stories. I felt trapped. All I could do was look out on to beautiful days outside. I could see the rooftops and church towers from the window. If I sat up straight I could see past the city to the hills. I was desperate to get out, and I remember a nurse telling me how, on her day off, she had been to the sea. To see the water ripple, to feel it, I would have given anything.
In my head, I planned amazing holidays for myself, my friends and family. I reached the point where I knew that I had to get home so that I could recover properly. Yet, during all this time, I never felt too bad physically and was never in severe pain.
I had dreamed of my homecoming and imagined the warmth of my parents' home, walking through the front door, wiping my feet on the brown prickly mat, the smell of good food, the sound of the lawnmower, the song of the birds... There was no way my coming home could ever disappoint.
As I began to learn to live without a stomach, so my body began to adapt. In humans, the stomach has the job of storing and mixing food until it progresses into the intestine where digestion continues. As my stomach had been cut out, part of my small intestine was joined directly to my stomach in what is called a Roux-en-Y reconstruction. Without a stomach, my food passed directly from my oesophagus into my small intestine.
With time, I was told, the body would adapt; the small intestine would make a small pouch where food could be stored a little longer (mimicking the stomach), before it continued on its way. It is one of the human body's remarkable survival mechanisms.
Weighing about eight stone, I could not afford to lose much weight. The doctors were concerned about this, so I went home with a feeding tube inserted into my bowel. It was attached to my body just above, and to the left, of my belly button with three little stitches and a plastic triangle. I was to hook it up to a machine each night, which would drip food into my bowel, bypassing the area on which I was operated. I never liked feeding that way because I always woke up feeling really full.
But I didn't have to rely on this for long. Soon, I was also managing to eat small amounts, which meant that I had to eat often. After experimenting, I found I could eat whatever I wanted, and it didn't seem as if there were any particular foods that were going to upset me. I have always enjoyed eating healthily, so I was happy I could still take pleasure in a bowl of fruit and yogurt in the morning.
Given that I was eating so well, it was not long before my feeding tube was removed. To this day, I am really lucky in that I can eat any foods I want. The only difference now is that I eat slightly smaller portions.
Nurses came to the house regularly to change the dressing on my wound. It took time to heal and now all that I am left with is a vertical scar about four inches long just below my belly button.
Mentally, the last year has been an eclectic mix of emotions; elation, fatigue, sadness, gratitude, hope... I am a fairly active person, and that doesn't make convalescing so easy. I learnt to listen to my body and respect its needs.
A few months after my operation, I started to take work as a supply teacher. Before long I realised that it was too soon and accepted that I would have to wait a bit longer. As time went by and I started to be able to eat more and more, I took a part-time job teaching English. I managed up to 16 hours of work each week.
In my spare time, I was very tired and lacked the energy to be as sociable as I would have liked. Even now, this is probably the area in which my life is most different. I am a social person and really love going out. I also love walking in the Peak District with friends. Now, it's hard for me to gather the energy, but I hope this will change.
My smooth recovery and resulting good health has only been interrupted by one thing. Sometimes, for no reason obvious to me, I am overcome by an excruciating pain in my abdomen and back area. The first few times this happened it lasted for about 40 minutes, which I spent in the bathroom with my head in the toilet bowl, sitting on the toilet, crawling about the floor, crying, unable to be still, trying to concentrate on my breathing. It was frightening, for me and those who were with me. It felt like something was very wrong with my body.
Then the pain would just disappear and I was left exhausted. I am not sure what brought on this pain, which led to my recent re-admission into hospital. I suffered the pain for three days and nights before I started vomiting and decided I should go to A&E. I was instantly put on a drip and starved of food and water. This, along with having vomited, seemed to ease my pain, and by the time I was admitted on to the ward I was virtually pain-free and started to feel like I was just a crybaby.
In hospital, I was given several scans and X-rays. I left without a firm diagnosis, although the likelihood is that I suffer from adhesions; after surgery, it's possible that scar tissue sticks together, causing my small bowel to twist temporarily. It is likely that the twisting of my bowel causes it to block partially, and this is the source of my intense pain.
I am learning how to cope with this, and when it happens again I stop eating and drinking for up to 24 hours and use heavy painkillers. If the pain lasts for more than 24 hours, or if I am sick, I realise that I must go into hospital. I can't say this doesn't worry me; I really don't want to be a sick person.
For some time now, I have been planning a trip to South America with a friend, although this could be difficult if I fall ill away from home. I currently live with my parents and have done so ever since my operation.
Some time soon, though, I feel I must make the move to live more independently again. It is likely that I will only work part-time, and I know that when I am ready to settle and have a family I will have another challenge to overcome. I am able to have children, but there will be decisions to make about the genetic testing of either my eggs or my children.
But I will cross that bridge when I come to it. Even now, I believe myself to be very lucky. And, in response to the question as to whether I regret my decision to have my stomach removed, my answer is simple – no way.
Gastrectomy: the facts
* A total gastrectomy, or removal of the stomach, is usually performed on people with stomach cancer, but it can also be carried out where genetic tests show a significant risk of developing a hereditary cancer.
* After removing the stomach, the surgeon will join the oesophagus directly to the small bowel. This procedure is called a Roux-en-Y reconstruction.
* Surprisingly, the body soon adapts to the task of digesting food without a stomach, and the body's ability to absorb nutrients is affected very little. Instead of being mixed and stored in the stomach, foods will be broken down in the small intestine.
* People who have had a total gastrectomy can eat most normal foods, but in smaller, more frequent portions. Some foods, such as sweetcorn, need softening by the acids in the stomach; these may cause problems with digestion and should be avoided.
* In time, a pouch is formed in the small intestine, which allows food to be stored a little longer before continuing on its way. Eventually, many patients can return to eating normally.
* Following a total gastrectomy, patients need to have regular injections of vitamin B12, as the stomach controls the absorption of the vitamin. A deficiency in this vitamin can lead to pernicious anaemia.
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