Thursday, November 6, 2014

Crohns Disease Can Suck Eggs

It's been two years since I landed in hospital, at the point of collapse. No only had I not recovered from Sebastian's birth, I'd had a series of puzzling health problems that my local Medical Centre did not address.

Sebastian was nearly 12 weeks old and I hadn't had a period yet. I was losing weight rapidly, not only had I lost huge amounts of kilo's during the pregnancy, I lost another 10 kilo's after he was born. I was 30 kilo's less than my starting weight. I was constantly dizzy, and experiencing agonising pains and discomfort to the right of my tummy. Sweats followed by chills at night meant that I was always waking up soaked for Seb's late nights feeds.

The doctors kept telling me it was normal. That I couldn't expect my body to behave the same way after my third child. That I was experiencing uterus pains, and it was normal for it to continue for weeks and then months, increasing the more children you have. I struggled on each day. I woke up, changed my children, fed my children and napped alot. I had trouble picking the kids up, it hurt my tummy so much, and my arms were getting weaker and weaker.

But I struggled on. I kept seeing the doctor, at least weekly, if not more often, because between my super premmie baby and my own health worries I was in their offices all the time. In hindsight, just seeing any doctor in the medical centre instead of one doctor was a big mistake.Maybe one doctor would have picked it up.

I was dying. My Crohn's Disease was eating away at my body, and had gone undiagnosed for years. With the benefit of hindsight all the symptoms were there but were overlooked as being hormone reactions to my pregnancy.

I've had two years to come to terms with having Crohns. Steroids, multiple operations. a stoma bag for 6 months and a cocktail of medicines. Today I am healthy. My weight is back to pre Crohns system - far too overweight. I'm in an education program for Crohns, which I guess is a blessing. Because I'm in the program I don't have to pay specialist fee's. It does mean I have a different student looking after me every visit, but as they are overseen by the same specialist I don't feel like my care is lacking, just that it is so frustrating to have to start my medical history and progress again at every visit.

The stoma bag is quite possibly the worst thing I have experienced in my whole life. I never want to wear one again. The Stoma care nurse told me that if I had it for life I would have adjusted mentally to it much faster, but as it was, that 6 months was a time of depression, hiding in my bedroom and never wanting to leave the house. We moved in with my in-laws for most of it, which was a good thing because for a little while I could barely function. Between my depression and my physical weakness while I recovered, the kids needed someone stronger than me to care for them.

I can't comprehend wearing a stoma bag for the rest of my life. Just writing this post is a challenge. It's typing the words that I could only skim the surface of back then, and am barely scratching at now. There are days when I think I would rather die than wear a stoma bag again. Is that terrible? I would rather die than stay with my family if it meant wearing a bag again. I'd rather die. Maybe I'm stronger than that, and I would find a way through it, but I hope I never have to find out. If I can't even write the suggestion without a mountain of tissues I doubt it.

I still don't think about my Crohns much. I avoid all the foods I have to avoid, even though it means I am packing on the weight in the absence of a new, Crohns friendly diet.

In that stressful window of time trying to settle our new house, I had a specialist appointment. I feel healthy. I look healthy. I take my medicine, avoid foods, and have mortifying bathroom behaviours, but mostly I can pretend I am normal. Sometimes I have tummy pains, but my terror of a stoma bag again means that I choke it down, I don't tell my doctors and I don't tell my husband. Eventually it goes away,

I feel like my specialists drip feed me the bad news. I must give out the impression I am on knife's edge. It's because I am. How can there be more bad news when I feel healthy? But there is. And as always my grasp on it is tenuous, I barely absorbed the detail. I'll have to write it down next time. They categorised me, in a series of medical mumbo jumbo I've been categorised as the most serious level, or bracket, or number, whatever. I'm pretty much guaranteed to deteriorate and need further surgery. They are also monitoring something in my blood tests each quarter. When it drops below a certain point, which it is gradually drifting towards, I will need to change medicines to some injection. An injection that costs over $2000 EACH FORTNIGHT because it is isn't covered by Medicare.

Oh wait. It's covered by Medicare for people who are serious and at life threatening risk. So that's me.

Mixed blessing much?

I hate my Crohn's. Join my pity party.


  1. Sending you lots of love Elise xox

  2. I have had Crohns for 21 years and i so get it but you gotta hang in there xo


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