Sarah & Jane’s Stories

Faith, Family & Friends

Before I share what has helped me cope these last year, may I share with you a tiny glimpse of what has happened to Jane, now 14. She became unwell at 5 months of age and diagnosed with a liver disease that would likely see her needing a transplant 10 years on.  This she had on Good Friday of this year. Along the way she has collected more diagnosis, one being Ulcerative Colitis for which, less than 18 months after diagnosis, at the age of 10, she needed a total colectomy and ileostomy formed. This journey has taken us through some close calls, and even required us to incorporate regular life threatening situations into everyday life. So what are some of the things that helped us?

First and foremost my faith, which Jane and my family share.  When Jane was diagnosed I drew deep into my faith.  I sorted out what was important, like God, friends, doctors, knowledge and understanding, and discarded what wasn’t, like an immaculate home (actually I was pretty willing to throw housework out the window), unhelpful pettiness and many of the things that our society might rate as important.

When Jane was first diagnosed, God promised me that I would see her grow up. When I was told that she needed a colectomy, I sought refuge in God. As a nurse, I had cared for people with stomas and admired their courage & coping skills, now in  I wondered how I would learn to cope. Jane, now aged 10years, surprised me, to be told she was having a surgery to form a stoma, something she had never even heard of, and take it on board was simply amazing.  When she was listed for transplant, God promised me she would get one, and placed on my heart that it would be Easter. One Easter came and went, but as we neared the second one, He told me it would be Good Friday – so on Good Friday while she was in theatre, I knew in my soul, because of a promise, that she would be fine. Knowing and believing there is something more than just what we can see helps us make sense of the tiny portion visible to us.

My family and friends have been a great support, and while medical staff were, and still do at times, tell me the way I do things isn’t the way I should (and as a nurse I kind of have to agree) – the way I do things for me works. John typically has looked after our other 2 children, while I stayed by Jane’s side. This has been tough, but I believe it’s the way it is meant to be for our family, so it works. Surprisingly, keeping in touch with friends via Facebook became an important tool – I still hate being without Facebook access when in hospital and I am so thankful for friendships close to home, and around the world, that have come about only because of Jane’s illness. Some support groups have been great too, while others didn’t pan out – it was just a case of finding the fit that worked.

A good medical team has been vital for me. We have had the some of the same doctors since Jane was a baby, and a doctor can usually tell if I trust them – I ask them hundred and one questions! If I don’t care for their answer because I don’t trust them, I simply don’t ask: Jane’s core medical team consists of a few doctors who I trust and respect dearly. At times, especially when she is admitted, I need to rely on other medico’s, but the ones I trust remain my lifeline.  Knowledge has also given me strength.  I try to read current journals, and when I don’t understand them, I take them to the doctors and ask them to explain them to me. Their wisdom, kindness and willingness to listen to me have made them invaluable.  It has been suggested that at times my knowledge may be a weakness or flaw, that it means I hold on to tightly to the reigns steering Jane’s care – being a strong advocate for Jane is important to me.

From Jane: (talked with Jane about what to write, she’s not much of a writer)

When she was first told she needed a stoma she was initially hesitant, but after discussions she understood why she needed it. The nerves were certainly there and I remember her making us call her trusted gastroenterologist from the surgeons rooms to talk to him about a couple of aspects.

After a complicated recovery she began to make some improvements, but this did not last long because her liver disease meant she was becoming increasingly unwell. One complication of liver disease is the formation of varices, weak vessel veins that form around gastrointestinal tract, and are prone to bleeding. Most commonly these form along the oesophagus, but the purple ring that began to form around Jane’s stoma was the sign that we might be in for some issues.  The first time she bled I was with her on her school camp and she lost about 100mls of blood. These episodes of bleeding became a big problem, and Jane became so disappointed each time they occurred.  She was desperate not to have to go into hospital, especially when one occurred on her birthday.

For a time she was frustrated and disappointed that she had the colectomy, feeling that it was supposed to make her better.  With her poor health though she never really saw the stoma as something that held her back, more a nuisance because of the bleeding and the treatments required for this, and also complications we were experiencing with bags leaking and skin breakdown etc.

It took some time, but since the transplant and further surgeries (due to bowel obstruction) appliances now stick well and the practicalities of the stoma care are more predictable.  More frustrated now with the clothing restrictions as she has chosen to tell only her close friends about her stoma, she feels self-conscious about the bag being visible.  This is especially the case in regards to her drama and dancing and the need to be able to wear costumes. We are just now looking at the possibility of J pouch surgery and hope she is hopeful that this will give her more freedoms to enjoy her newly acquired improving health.

The above was presented at the Panel Discussion as part of Y.O.U. Inc's "Let YOU Be Heard" Day (October 2012)

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