And then...

The good news was that six months after Maryanne was born, I had my tonsills taken out in yet another operation. This made a huge difference to my daily life. My tonsills were so badly scarred from the acid burns from the reflux that they had been trapping every bug I came in contact with. I have only had one pneumonia and one lesser chest infection since this procedure was done. For a while after Mary was born things weren't too bad. The diarrhoea was slightly lesser after she was born than during the pregnancy and I was able to exercise and lose some weight.

But then unexpectedly I was pregnant again with my fourth and last baby, Lachlan. His pregnancy was an utter nightmare. I had managed to take a small part time job doing nightfill at The Warehouse. But I was getting sciatic and pelvic pain one night my legs collapsed underneath me and I almost fell off a ladder. I had been feeling nauseous too, so I went to my GP for advice. My period wasn't even due, but my GP suspected a pregnancy, and sure enough... LT had been made. I had to leave work 3 weeks later, as I was becoming too unstable on my legs. At 10 weeks my right leg collapsed underneath me as I was walking down some stairs, and I broke my leg. (At least, I wasn't x-rayed then, the fracture was found in an x-ray after LT was born). I found it difficult to walk obviously, but even with the hairline fracture in my tibia, the pain from my pelvis and down my sciatic nerve was far worse. At 12 weeks pregnant I was only able to walk with the help of a walking stick. At 18 weeks I was on crutches. At 7 months I only ever left the house in a wheelchair. It was hideous. The pain was such that I wondered if I could ever love my son. But God blessed us with the most beautiful baby I had ever seen yet again, and it was love at first sight. And immediately after his induced delivery I was able to walk to the showers unaided. It took about 12 months for all the residual pain in my hips and legs to subside.

But while my legs improved, my stomach got worse. Far worse. When Lachie was 2 weeks old, I went out to a restaurant with my husband and friends. I became suddenly very ill after eating our dinner, and only just made it to the bathroom before falling unconscious on the floor. Within days this became an almost daily event. After eating any meal, instant nausea, strong stomach cramps and fainting spells so strong that if I didn't lie down I'd lose conciousness. It didn't matter what or how much I ate, it got worse and worse. The diarrhoea was worsening, to the point of requiring rehydration one time, and the shoulder-tip pain was back with a vengence.

Given my medical history, my GP made an urgent referral for me to be seen at our base hospital. And we waited, and waited and waited. For over two years we waited. In the end, I was ambulanced into hospital one evening when a friend came to visit and was appalled by the effort I had to breathe after eating. They x-rayed my chest again and this time found a hernia so large, it was over 1/2 of my stomach that had burst into my chest. I was hospitalised for a week, during which time they discovered that the scar tissue from the burns to my esophegus was so bad that it had shrunk by 8cm. We were told that in previous surgeries, the surgeon had simply stretched it down to where it was supposed to be, stitched it in place and hoped that it would hold. And each time the stitches burst, pulling my stomach up with it creating larger hernias with more serious symptoms. There was no surgeon in Invercargill capable of fixing my stomach and lengthening my gullet. So my specialist rang a gastric surgeon in Dunedin telling him about my case and asking him to take me on his list with urgency. Urgent, meant I had to wait 3 months. In fact, 4 months, as my first date for surgery was delayed a month due to strike action at Dunedin hospital. During that time, I was practially bedridden, and unable to eat more than tiny sips of formula a day. I lost 16kg.

Finally I was called up to Dunedin hospital and had my much needed surgery. It was a lot more complicated than expected. My stomach was badly herniated, and had stuck itself to other organs including my liver. In the efforts to dissect it, I had a major bleed from my liver and had a hole poked in my plura. The large tear in my diaphram was patched with porcine tissue and stitched. A large part of my stomach was cut away and made into a 8cm extension for my gullet. But most worrying... it was discovered that in a previous operation the vegus nerves that control how my stomach empties to my bowel had been irrepairably damaged. This was the cause of my bloating, stomach pains and diarrhoea. My surgeon felt the best result would be gained from surgically permenantly opening that valve, meaning that food would basically pass directly through my stomach and into my bowel.

This was by far my biggest surgery yet. Because of the large amount of scar tissue in my abdomen, it had to be open surgery, and I was in Dunedin hospital for 8 days. I came home to a long and painful recovery. For 6 weeks, I had only a fluid diet, and tiny amounts. After then I was able to eat larger amounts and food of a regular consistency. But it wasn't long before the lasting effects of the surgery were felt. No more shoulder tip pain, with the hernia gone. But the "dumping" symptoms of extreme nausea, stomach and bowel cramps and fainting are worse now than before the surgery. My bowel apparently just isn't coping with the largely undigested food going through so quickly. The symptoms start within minutes of finishing eating, and happen after everything I eat. It doesn't seem to matter what, or how much... though certainly the more I eat the worse it gets. I am ill constantly. I hate it. I have passed out in front of my children. They see me writhing on my bed after meals, they see my distress and it's not possible to hide it from them. They are the children of a chronically ill Mother, just like I was. And my specialists have told me that there is no hope of these symptoms improving. What's worse, apparently I have a 1/3 chance of reherniating. And while my surgeon wouldn't be drawn into the possibility of me losing my stomach, he did say that I was nearing the limit of how many stomach surgeries I could have because of the increasing scar tissue.

And the kicker?? I am still aneamic after the operation, 8 months later. I have been taking iron supplements since coming home from the hospital and nothing is helping. Now I see a new specialist, an GYN who believes that my very heavy periods are causing me to lose more iron rich blood every month than I can replace in supplements. And I may need to have a hysterectomy.

I just want to have a year with no admissions to hospital. Just a year. I am 37 years old, so young to have had so much sickness. I know it's not terminal. I know that. But I am so ill, so sore and so very tired of this. I am looking at a lifetime of illness and pain. And I don't know if I can do it. I've always prided myself on being very staunch and laughing my way through the pain, but lately it's been getting harder to keep smiling. I just want to be like other mothers of young children. Healthy, happy, vibrant... able to go to people's homes or restaurants for a meal. Able to work if I choose to. Able to go on school camps. But I'm not. That's why I'm writing this blog. Surely someone else out there in the world is going through this. Surely I'm not alone.

Thank you for reading all of this. I know it was long. But it helps to get it out.

Blessings on you and your families.

Ruthie