When my body became a prison

Okay, that's a dramatic title. But it's what I feel like a lot of the time. Most people live their lives completely unaware of the bodies that carry them. They can run, play, go out, eat... without pain or discomfort, without fear of embarassment. But I am reminded of my body every single day. Not a day goes by without pain, nausea and dizzy spells so serious that I can do nothing but lie down until it passes. And all because I eat.

When I was younger I was rarely ill. Just the regular childhood bugs that you get. Nothing at all serious. And when I was working in Christchurch, before I got married I think I literally had 2 sick days in 4 years. I was fit, and healthy. I was married in 1994 and fell pregnant within the first year. And that's when everything changed for me.

Carrying Madeline was difficult. The nausea started at 6 weeks, the vomitting and reflux at 7 weeks. Really, that's all I had to cope with that pregnancy. Just constant vomiting for the remainder of my pregnancy and unrelenting reflux. I used to drink a bottle of Gaviscon in under a week. I had heard that this wasn't unusual in pregnancy and I longed for my baby to be born in part so that I could get some relief from the searing pain of the acid. But sadly, after my angel Madeline was born, the reflux continued unabated. I don't know if this added to the stresses I felt after her delivery or not, but I was hospitalised with Post Natal Depression when Madeline was just 10 weeks old. We stayed in hospital for 5 weeks, and during that whole time, I kept refluxing each and every night. The nurses must have heard me choking. But I have no memory of anyone ever offering me any help.

In the two years between Madeline and Harry (my second child) I continued taking Gaviscon daily to cope with the severe reflux. I had my bed raised at the head in the hope that gravity would help my symptoms and slept well propped up with pillows. The acid reflux continued during my pregnancy with Harry, and by the time he was born, I was waking up choking on acid that had flowed into my mouth and down into my lungs in my sleep... almost every night. During Harry's pregnancy I had the added complication of a septic gallbladder, which was removed in an emergency surgery when my little boy was only 13 weeks old. It was so hard being in hospital for those 10 days, away from my young children. Harry learned to roll when I was in hospital. I missed it. I had no way of knowing at that stage how much more of their lives I'd spend ill or in hospital.

The children and I moved home to Invercargill in March 1998. I was so ill with the reflux at this stage that I woke choking every night often several times a night. I was eating the blandest of foods, and suffered from frequent bouts of pnuemonia and bronchitis. I had been to two doctors in Christchurch, and two more in Invercargill complaining of my symptoms before finally a GP took me seriously. He was amazing. He got me an urgent referral to Invercargill's base hospital and I was seen within 4 months. A week later, in December 1999, I was in surgery for the first of (so far) 3 Nissen Fundoplacations.

The surgery was a straightforward laproscopy to reduce a large flat hiatus hernia and do the stomach wrap. I was only in hospital for 3 days, and I recovered well. That was the last significant reflux I have ever felt. For a year or so, things were great. I could eat what I wanted, I was able to exercise, and lost quite a bit of weight. I was free of all of my digestive symptoms except that I had constant chest infections. It was the most healthy I've been since Madeline's delivery.

And then about a year after surgery, it started all over again. This time, no reflux, but the most hideous pain in my left shoulder, leaving me almost unable to breathe after every meal. It's hard to describe how severe the pain was. But I had to take the smallest and quickest of breaths to be able to bear the pain, and bouts of this would last up to 10 hours. I had remarried, and my new husband, Patrick, was so worried about me. He asked me often to go to hospital, but I refused to. I kept telling him that it wasn't urgent and I always came right, and A&E wouldn't see me. But one day, I just couldn't breathe after lunch one day. No matter how hard I try, it couldn't get enough air, and oh it hurt so bad. So I called for a taxi and went to the hospital. (hehe, the driver looked worse than I did I'm sure). They x-rayed my chest at A&E and found another hiatus hernia. This one much larger than the last. About 1/3 of my stomach was in my chest, pushing hard up against my heart, lungs and aorta. I was in surgery again a month later having another laproscopy, a hernia reduction and a nissen fundoplacation.

This was a more difficult 4 hour surgery because of the hernia's proximity to vital organs. My lungs collapsed during the operation, I developed pneumonia afterwards, and was slower to recover. But the first real sign that something had gone wrong came two days post-op, the day I got home from hospital. The diarrhoea started that day. And continued unabated for the next 5 years. Every single day, sometimes up to 40 times a day. I asked the surgical team twice about it, asking if my new symptoms were related to my surgery. But they refused to acknowledge that. My GP wondered whether I had IBS brought on by the stress of the operation. But I had my doubts. I fell pregnant immediately after this surgery, which I'm sure didn't help. Maryanne was a very welcome if not entirely planned member of our family, but after her birth the shoulder tip pain started again. Oh, between the shoulder, my breathing, the constant diarrhoea and associated bowel cramps and bloating I was miserable. I couldn't leave the house. I couldn't be away from a toilet, often not even long enough to drive to the local store. I was utterly dispairing of my health at this point.