Life hack: Colonoscopy

So, I had a lot of time to think during my colonoscopy prep. Mostly about how much I wished I could fast forward time 24 hours and how I hated my body for putting me through this. I guess one of my purposes for writing this blog is to help people who may be going through similar trials and I definitely have some experience with colonoscopies!. So... here is my list of
10 ways to survive colonoscopy preparation:

1. Plan ahead - make sure to buy some chicken stock (or chicken noodle soup & drain), light coloured jelly (I prefer pineapple) and some yummy fruit juices (clear) & powerade (to trick yourself into thinking you are treating yourself).
2. Do not plan ANYTHING after 2pm the day before (or whenever you are directed to start the prep). You will not be available.
3. Don't go to the gym you crazy person (me). Using any excess energy when you can't replenish is foolish.
4. Environment - create a space where you are comfortable, entertained and close to a toilet. I holed up in the bathroom with cushions and blankets, close to the toilet. I had some calming music & just rested between toilet runs.
5. Entertainment - In my 'bathroom cubby' I had a novel, crossword, my ipad for movies, phone and tried to keep busy to take my mind off the situation.
6. Space the time out - if you have 15 minutes to drink the Picoprep, take a tiny sip, followed by a sweet drink or mouthful of jelly. Then go again. If you think you will just skull it and get it over with, chances are you will end up throwing it up and then you're screwed. Also, when you have an hour for Gycoprep use the whole hour with little sips.
7. On the topic of throwing up, use ginger tea, or burn a ginger candle. I had a cup of Pukka 'lemon, ginger and manuka honey' tea, and breathed in the steam to calm my stomach.
8. Use wet-ones or super-soft mosturising toilet paper. This was not something I thought of ahead of time. Let's just say, I regretted it.
9. Make yourself wake up two hours before the procedure to have a drink and even some tea/broth/jelly. It can be a long wait between the night before and waking up after the procedure and you never realise how much you want a drink of water until you can't.
10. Take the day off to rest. If you are like me, you may sleep very little the night before, as well as all the energy your body has been sapped of through the clear out. Also be careful not to break the fast with anything too heavy, as tempting as a feed of fast-food might be!

And remember, the discomfort is temporary, and the preparation is 100 times worse than the actual procedure.

Why am I not surprised?

The tests results are in. I have been cleared as having my Crohn's managed, endo under control, husband perfect. But, out of nowhere, came another roadblock. Apparently my TSH is 3.5, which means my thyroid is under-active. Another condition to research - I am becoming so medically knowledgable! Anyway, it does explain a lot - like, why I'm always tired/lack energy, have been struggling to lose weight despite trying really hard, and can also be linked to irregular/heavy menstrual periods. So, six weeks on thyroxine and a trip to another specialist (endocrinologist - I told you, I'm going to be the most medically educated woman alive) and we will revisit the 'IVF situation'. Woo hoo.

My life with Crohn's Disease

I suffered with Crohn’s Disease for a year before I was diagnosed. It started with every bite I ate making its way through my digestive system at lightning speed, clawing with sharp nails through my bowel and making a dramatic exit with little warning. I quickly developed a very valid anxiety about being within appropriate proximity to a toilet at all times. I have memories of racing around the city looking for a public toilet, leaving a half-full trolley of groceries, abandoning social occasions for refuge in my own bathroom.  I started to withdraw permanently to my cold, tiled palace.

The second, most glamorous side effect was that, as all food and drink was racing through me like a slippery-slide, my body was not retaining nutrients – the biggest problem being iron. I became weak, pale, eternally light headed. And miserable.

You’re saying – go to the doctor you crazy person! Why would it take you twelve months of misery before you sorted this out! Of course I went to the doctor.  The local GP told me it was nerves. Anxiety. Stress. I just needed to relax. I was just “worried about the wedding”. Oh, I forgot to mention – I was due to be married in October. Of course, doesn’t every bride to be develop debilitating nerves at the thought of a lifetime spent with the one man!? So, I accepted this diagnosis and continued to collapse in inconvenient places and learned to hide my frequent bathroom visits.

I also lost a lot of weight.

Like, 20 kilos.

I was continually told how good I looked, whether I had been working out/dieting/developing an eating disorder. I actually had a “friend” look at me with envy one evening out and say, “How do I get what you’ve got?” Seriously.

So my wedding day came, without diagnosis. I looked bloody incredible. Pity I felt like I was going to pass out all day and was too afraid to eat. I still can’t look back at those photos without remembering the pain and discomfort of that day. Others see a beautiful, thin bride – I see a sickly, miserable woman. I got through the day without passing out, although photos were cut short and I starved myself with fear of an emergency.

It happened after the speeches, before the cutting of the cake. My body betrayed me. I knew I had no other choice. I went to the bathroom, by myself. I lifted the veneer of chiffon and satin and organza and let go. That was when it happened. I wiped. And there it was – execrably vivid red blood. I was bleeding from the inside out. And I was sure of it – I was dying. My new husband and I finished off the formalities of the evening and left our own wedding early, me cursing my body for disallowing me the special day that every bride deserves. I spent our entire honeymoon in Fiji on the toilet, in too much pain to walk, eat or have sex. I’m sure my husband was starting to question his choice of bride!

I returned home, and was finally diagnosed as having Crohn’s Disease. It’s pretty heavy stuff, being told you have a chronic illness with no cure. But, at the time, the possibility of a treatment – something that would stop the misery, however temporarily, was a relief. It took a couple of years to find the right medication, but I’m one of the lucky ones – they found one that worked. I did not develop fistulas, cancer, obstructions. I do not have a stoma bag. And those who do are freaking heroes.

I do have to take immuno-suppressants (doesn’t that seem completely backward – I have to take a foreign chemical to stop my body from attacking itself?). These are of the same strength as those who have had an organ transplant, and, as you can imagine, leave my immune system fairly vulnerable.

My specialist told me that I would never be able to hold down a full time job; that I would be incapacitated forever. Well, it hasn’t always been easy (try leaving a group of 14-year-olds without a teacher mid-lesson while you run to the closest cubicle?), but I am proud to say that, six years on, I do hold down a very demanding, time consuming job, and am amazing at it (why does society think it is not okay to boast about our accomplishments?). I am also still married. And have sex. Sometimes.

As we speak, I am sipping a delicious cup of Picoprep (if you don’t know what this is, think yourself spectacularly lucky) in preparation for tomorrow’s check-up colonoscopy. I will always have Crohn’s disease, but am told there will be a cure in my lifetime. For the love of toilet seats, may this be true.

Birthing the beast, by Natalie Willis

Natalie Willis is a 31 year old Policy Officer from Canberra. She is also my beautiful brave cousin.
She has written a post on her experiences below.








I have a bright yellow folder. It’s the expandable kind with a zipper. 

Sometimes it sits on the kitchen bench. Sometimes it lies beside my bed, in my back pack, or my car. Wherever I go, the yellow folder follows. 

Inside the folder are doctor’s reports, ultrasounds, blood test results, prescriptions, bills and receipts, and diagrams of stretches my physios think I do every day.

A couple of months ago I took the yellow folder to see my Endometriosis specialist. I have had constant pelvic pain for over a year now. Constant yet ever-changing; stabbing, pulling, aching, shooting, nagging, crawling pain. I had my second surgery due to Endo in late 2014, but laparoscopic excision and a cocktail of drugs have not given me even one day free of pain. 

So I went to see my specialist. 

I walked into his office with my folder and sat on the appropriate chair. 

My first thought on entering his room was:

 “Thank God he has comfortable chairs with nice padding”.

Just the thought of sitting on cold, hard, wooden chairs in waiting areas fills me with dread and anxiety akin to what I feel on my way to have fillings at the dentist. Chairs are the enemy of chronic pelvic pain.

I explained that I was not feeling as well as I’d hoped. And so ensued a lengthy discussion about my options. There aren’t many – and none of them easy or with guaranteed or even likely results. 

And as will inevitably happen when you are 30 years old sitting in front of your gynaecologist, he says: “are you thinking about having children soon?”.

Despite knowing full well that this question was coming, I was still unprepared. I spluttered something like: “not just yet but probably soon-ish”. He showed me charts and graphs that all screamed the same story at me: “YOU’RE RUNNING OUT OF TIME!”

I tried to placate him by asking if there was something I could do to get the ball rolling, and he handed me lists of fertility tests for me and my partner. I put the pieces of paper in the yellow folder. 

I left feeling validated but despondent. Validated that my pain is real. Despondent that once again my questions yielded more questions rather than answers. While I don’t feel like I’m ready to be a mother, it’s always been that thing that I’ll get around to someday when the time is right. Now I have a piece of paper that could either give us a big green light, or cast a shadow on that future hope. Or once again present me with more unanswered questions. 

How do you know you’re ready to be a parent? I always thought I’d just ‘know’. That seems to be what happens to other people. This intrinsic yearning just seems to happen for them. They become obsessed by it. It consumes them. So I just figured if I waited long enough it would suddenly wash over me. Maybe I’d be on a bus, or watching a movie. Maybe one of the myriad of other people in my life having babies would inspire that reaction. 

But it hasn’t come. I’m still sort of… indifferent. It’s a ‘someday I probably will’ kind of thought. The trouble is, ‘someday’ is on the doorstep, knocking loudly and calling my name.

If you are a Gilmore Girls fan you might remember a moment where Anna says to Luke “There is no good time to be a parent, you just are one.” Television reinforces what I hear from my friends; parenthood is inconvenient. It's smelly and dirty. It takes sacrifice and compromise. It's hard work. Maybe it's my appreciation for these facts that is creating this apprehension within me.

I look at most parents of young children, and they look tired. Draped in chewable jewellery and saliva. Parenthood is also a fashion choice, it seems. This thought leads me to another – that in some ways I am already a parent. But not to a child. I am the mother of a demanding, cantankerous, nasty disease. It takes my all my energy to attend to its needs. I take it to doctors and therapists. I try to figure out if it has dietary requirements and attend to its nausea and bowel issues. I accommodate its moods. And it demands fashion choices of its own. Lycra features heavily. Jeans and belts are not part of its wardrobe. If it can't stretch over a belly that looks pregnant despite being potentially barren, then it just simply isn't an option. This disease is a child that just wants to run around naked.

I am the mother of a beast. I'm slowly learning how to tend to it, and even to see the blessings it brings me. Maybe I'm more prepared to be a real mother than I know; and maybe one day I'll know for sure. But for now those pieces of paper rest silently in the yellow folder, waiting for me to be ready to know the answer.