Well... It's been 12 months!!! Woo hoo

I am elated!! This time 12 months ago I was recovering in Dunedin hospital after my latest operation. I got home on the 10th of October. Almost 12 months ago. And although I've had 3 outpatient appointments this year, and one day surgery... I haven't been an inpatient at all. To the best of my memory, this is the first time since my 12yo daughter was born that I've gone 12 months without being an inpatient at hospital. And that's a mighty feeling.

What's even better??? My dream after my surgery was to be able to eat steak with no pain or illness. It's been years, I don't know how many, since I've tried it. And now finally, just 2 weeks ago I ate a steak... a lovely juicy ribeye... and I can't tell you how good it tasted. And I didn't get sick (other than a little lightheaded), no pain, didn't have to lie down!! It was awesome!!! I'm feeling better than I have in a long while. Whereas 3 months ago when I wrote the last blogs, I was sick literally every time I ate, now I can have an entire day that's symtom free. And on the days where I am sick, I am recovering faster.

I'm trying to think posatively that this is not the lull before the next health storm and maybe some more long term improvement in my symptoms. I have lulls before. So I'm not over thinking it, but I am totally accepting it for what it is. Great!!

Can you help??

I have an agenda here. I'm looking for anyone who has dealt with a condition like mine.

Recurrent Nissen Fundoplacations... I'm really interested in how many you could have. Has anyone reached their limit on surgery and have faced gastrectomy??

What about Vegus nerve damage?? Has anyone out there had severe damage done to their vegus nerves, and/or surgical opening of their gastric/intestinal valve, and gone on to have a repair that left them with a "normal" life?

I'm looking for hope. I need to know that things will get better. I'm so young, to go through the rest of my life like this seems unbearable. The pain is intolerable, and prevents me from living a normal life. I'm just looking for hope. Is there anyone out there with hope for me???

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

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.

The start of my story

I was born the younger of twins to a dear lady, who selflessly gave up her rights to us in favour of us having a more secure life with a married couple. My sister and I were adopted into a lovely family. Our parents already had two boys, a 3½ year old of their own, and a 10 month old adopted son, when we came home at 25 days old. My poor mother, can you just imagine having four children under four years old? hehe.

Our life could have been ideal, but for a few things. My parents were part of a church bordering on cultic. In fact, that's a very generous way of putting it. It was an interesting way to grow up. We were not encouraged to have friends outside of our church, not allowed Christmases or Birthdays. We weren't allowed to date boys, play weekend sports or enjoy many of the freedoms that most NZ children take for granted. My parents were encouraged to spare the rod and spoil the child, and life as a part of that church was not ideal.

Having said all of that, my parents were loving generous people who made life a joy for us. We had the security of a strong family bond that so many of my friends didn't enjoy. And we needed it because when I was 3 years old my dear Mother fell ill. She developed pnuemonia, and from that asthma... the condition that plagued her for the rest of her life. When I was 5 years old, she wasn't expected to survive. And by the time we were in our teen years she spent much of her time struggling for her life in hospital, frequently in and out of Intensive Care Units.

We became very used to having a chronically ill Mother. It was our reality. It was heartwrenching at times, seeing her helpless in bed, struggling for breath, hearing her coughing all through each and every night while my Dad slapped her on the back for hours trying to move the crap in her chest... not knowing if she would live or not.

There is so much more to Mother's story than this, and I may write about it later. But I guess the lingering resolve it left me with is that I never ever wanted my children to have a chronically ill mother. I didn't want them to have the same fears, the same sadness, the same responsibilties that I had. And yet this is my children's life.