Coming soon... Chronic Illness

My story:  Describing the events and experiences I've gone through since my digestive system problems started drastically affecting my life in January 2000, which naturally crosses over all the other categories of the blog, particularly with photography. I really don't know what would have happened without photography being an important pastime, creative outlet and a way to earn a few dollars doing something I love to do over the last 8 years or so.

For a little over the past twelve months I've had to endure the most critically ill period in my life to date, spending over two months in the Royal Adelaide Hospital in 2010. This was due to my gastroparesis worsening over the course of a few months, until I could barely eat anything at all, and when I did, it was quite distressing due to the consequent terrible nausea, burning and indigestion sensations which were worst after food. Leading up to going to hospital in September, just eating a small tub of fruit puree would leave me curled up in the fetal position for several hours from the nausea.

I would liken the experience to a three-level simultaneous illness. You get the terrible sick, nauseated feeling of a stomach virus plus the permanent sensation that you've eaten about 5 platefuls of food too many, the drained, weak, exhausted energy depletion of a bad flu; and the depressing and horrifying reality that this is the way life is, and things aren't going to change anytime soon. And trying to eat, or being force fed with a tube, only adds to the torture. It doesn't make sense, it sucks, and it's not fair, but apart from permanently removing yourself from the gene pool, you really don't have much say in the matter, and just have to keep going through it as best you can, and hope and pray things will improve.

You can read more about gastroparesis here: http://www.g-pact.org/gastroparesis.html

  My first 2010 stay was for ten days in June, which seemed like an eternity at the time, which sadly was followed by a much more traumatising and horrifically torturous 7 week ordeal in September, October and November 2010. Which unfortunately coincided with my 26th birthday. As I write this it's now been over seven months since I've actually eaten any food, and have been getting nutrition solely from the liquid nutrition formula Ensure Plus via a jejunostomy feeding tube.

I would also be exaggerating if I said I've had any more than a litre or two of water orally this year, or even including the period since I came home from hospital in November 2010.

I ended up having three seperate feeding tubes during the course of my long hospital stay; first the naso-gastric tube, followed by a naso-jejunal tube, (the insertions of which were the worst medical experiences of my life; and I've had a lot of bad medical experiences) and finally the surgery for the more permanent jejunostomy tube.

Photographer: Rohan Phillips

Camera: Nikon D90

Lens: Nikkor 18-70mm f/3.5-4.5

Exposure: 1/250 @ f/3.5, ISO 400

To kick things off, I will start with posting photos from the 2010 hospital stays, describing what was happening at the time and experiences in regards to eating, medications, tests, medical procedures, nurses, doctors, dietitians, fellow patients, friends, parents and girlfriend while I was there. This will give some context to the rest of my stories of how drastically my illness has affected my life, and how that has in turn changed what I've done and been able to do with my photography and interests in cars, trucks and trains.

  In addition to all my issues, my younger brother suffers from a heart condition that has required two surgeries and several hospitalisations over the past few years and stopped him from being well enough to do much at all since late 2006, due to the condition, subsequent medication and the side-effects. The worst part is behind us now, in that there thankfully hasn't been any need for frequent 000 calls in the middle of the night for quite a long time, which was fairly common in 2006/2007 for a while there. Often when I was so sick myself I couldn't even go to the hospital with him in an ambulance when they turned up. Always seems to take a very long time for them to arrive, even if it's only 5 minutes. Photo below was taken in February 2007.

Photographer: Rohan Phillips

Camera: Nikon Coolpix S3

Exposure: 1.1 seconds @ f/3.0, ISO 100, -0.7 exposure compensation

So unfortunately my parents get to see a lot of doctors and hospitals between the two of us.

For a pictorial comparison to show how far downhill I went in 2010, these two photos of my girlfriend Sally and I were taken at my older brother's wedding on the 9th of January, on a 40+ degree day, I was probably around 63kg at the time.

Photographer: Anna Tarasiuk

Camera: Nikon D90

Lens: Nikkor 17-55mm f/2.8G IF-ED

Exposure: 1/320 @ f/5.0, ISO 200
 

Photographer: Prachya Turland

Camera: Nikon D90

Lens: Nikkor 17-55mm f/2.8G IF-ED

Exposure: 1/320 @ f/8.0, ISO 400

And here we are on the 6th of October 2010, by which time my weight had plummeted to just over 50kg, with a stomach that went from very dysfunctional to pretty much non-functional. I look a tad pale as well, hospital wards don't have a lot of sunlight.

Photographer: Sally Parker

Camera: Canon Powershot A480

Exposure: 1/250 @f/3.0, ISO 400

And here's a photo I took of Sally in April 2010. Sally very sadly lost her mum to brain and lung cancer when she was just 15 years old. So seeing me in hospital every day for a couple of months with tubes coming out of various places didn't exactly bring back good memories, but she's been right by my side the whole way. I'm very lucky to have such an amazing girlfriend.

Photographer: Rohan Phillips

Camera: Nikon D300

Lens: Nikkor 85mm f/1.4D IF

Exposure: 1/320 @ f/2.5, ISO 400

 -Epic amounts of personal doctor/hospital/medical/unpleasant health test experiences over the years, and a truckload of all kinds of clinical, pharmaceutical and natural medicines, treatments and supplements.

Photographer: Rohan Phillips

Camera: Nikon D70s

Lens: Nikkor 18-70mm f/3.5-4.5

Exposure: 1/100 @ f/3.5, ISO 400 

Photographer: Rohan Phillips

Camera: Nikon D90

Lens: Nikkor 17-55mm f/2.8G IF-ED

Exposure: 1/80 @ f/2.8, ISO 800

Photographer: Rohan Phillips

Camera: Nikon D70s

Lens: Nikkor 18-70mm f/3.5-4.5

Exposure: 1/50 @ f/3.5, ISO 1600

-The bewildering and depressing experiences of seeing a multitude of health professionals of many kinds over the course of a decade, who largely can't really do much to help, which just off the top of my head, includes:

Multiple GPs, first the regular family doctor in 2000, followed by several others in the following years.

At least 5 or 6 gastroenterology specialists and professors privately,  probably closer to 25-30 if I include hospital stays.

3 or 4 endocrinologists

5 or 6 dietitians

7 or 8 naturopaths of various descriptions, methods and effectiveness

2 or 3 homeopaths

2 chiropractors

2 Kinesiologists

2 or 3 psychologists for counselling and attempts at dealing with some issues through cognitive behavioural therapy, and 5 or 6 psychiatrists in hospital in 2010.

There's probably quite a few more, but that seems a ridiculously long enough list for now.

Ella's Story: A friend's 3 1/2 year daughter was diagnosed with hemiplegic cerebral palsy in 2008 after suffering a stroke in-utero in 2007. Ella also suffers from epilepsy, thrombosis, dysphagia, developmental delay, speech processing disorder and Pseudohypoaldosteronism. She currently has a naso-gastric feeding tube, and soon will likely be having a gastrostomy surgery to insert a feeding tube, similar to mine, but into the stomach rather than jejunum.

Photographer: Emily Jakas
Date: May 2011

Camera: Iphone

  You can read a little more about her early struggles on the Novita Children's Services website here: http://www.novita.org.au/Profile/Detail.aspx?p=558&id=175

Novita organises and runs the annual Adelaide Convoy for Kids, where hundreds of kind-hearted truckies give some children with pretty tough lives a fun and exciting day, taking them for a cruise around town in a big rig: http://www.novita.org.au/Content.aspx?p=538 This is my article on the 2009 Adelaide Convoy for Kids, which was published in the August 2009 issue of Truckin' Life magazine, you can see a happy Ella on the first page.

 Between Ella taking an interest in her dad's noisy cars...

 

Photographer: Emily Jakas
Date: July 2010

Camera: Iphone

 ...me taking photos of the family over the past five years or so...

Photographer: Rohan Phillips 

Date: February 2006 

Camera: Nikon D70s 

Lens: Nikkor 18-70mm f/3.5-4.5 

Exposure: 1/640 @ f/3.5, ISO 400 

 Photographer: Rohan Phillips
Date: October 2007
Camera: Nikon D70s
Lens: Nikkor 18-70mm f/3.5-4.5
Exposure: 1/50 @ f/3.5, ISO 1600 

Photographer: Rohan Phillips
Date: May 2011 
Camera: Nikon D300 
Lens: Nikkor 17-55mm f/2.8G IF-ED 
Exposure: 1/60 @ f/2.8, ISO 3200

Photographer: Rohan Phillips
Date: May 2011
Camera: Nikon D300
Lens: Nikkor 17-55mm f/2.8G IF-ED
Exposure: 1/30 @ f/2.8, ISO 3200

...her health problems...

Photographer: Rohan Phillips  
Date: March 2010

Camera: Canon Powershot A480

Exposure: 1/10 @ f/3.0, ISO 400


Photographer: Rohan Phillips
Date: May 2011 
Camera: Nikon D300 
Lens: Nikkor 17-55mm f/2.8G IF-ED 
Exposure: 1/50 @ f/2.8, ISO 3200 

 ...the Convoy for Kids with trucks and truckies...

Photographer: Daniel Jakas
Date: May 2010

 Camera: Iphone

Photographer: Rohan Phillips
Date: August 2009
Camera: Nikon D300
Lens: Nikkor 17-55mm f/2.8G IF-ED 
Exposure: 1/60 @ f/4.0, ISO 400

...and playing with a wooden train set...

Photographer: Emily Jakas
Date: April 2011

Camera: Iphone

...her story actually fits into every category my blog will be covering.

Novita are also running a new fundraising event this year on October 9th, the ‘Cool Kids Custom Car Cruise’; http://www.novita.org.au/Content.aspx?p=711. 

If you want to help an organisation that makes life a little bit easier for sick and disabled kids like Ella, as well as giving some assistance to their families and carers, there are several ways you can do so:  http://www.novita.org.au/Content.aspx?p=18

Adrian's Story: Adrian Miravitchi, the pastor at Grange Baptist Church, (which I've attended since I was born, health permitting) has led a very unusual and interesting life. Born in Romania under Nicolae Ceausescu's brutal socialist regime, Adrian became a rough street fighter and brawler, but moved past this violent lifestyle to use his fighting skills and strength to take part in wrestling at the Olympic level. He moved to Australia in 1987, living on a farm and driving road trains in the Northern Territory for some time. He was then struck down for nearly eight years with a crippling form of chronic fatigue syndrome, frequently leaving him bedridden and hospitalised for very long periods.

Photographer: Rohan Phillips

Camera: Nikon D70s

Lens: Nikkor 18-70mm f/3.5-4.5

Exposure: 1/320 @ f/5.0, ISO 800

 Fortunately he was gradually able to make a full recovery, and after spending three years on a farm after moving to Australia, he now spends a lot of time and effort helping out struggling farming communities up in the northern regions of South Australia. Well over a decade of drought has hit some communities hard, and he frequently drives up to deliver truck and trailer loads of food to needy families.

-Things not to say to a chronically ill person in general, or to the parent of a child with a disability, from my own and other people's experiences.

For example; girls, I know this might come as a shock, but having gastroparesis is actually not something to be jealous of for the skinniness, and surprisingly it will even adversely affect your life a touch more than a perceived excess weight of 2.4 kg.

 Jonno’s Story: A friend in his late teens with muscular dystrophy designs, plans and organises a fantastic and elaborate house and garden lighting display at Christmas, helped out on the physical side of things by a great family and friends, complete with an opening night party. I photographed his awesome Christmas 2009 light display extensively, and will post a series of images.

Photographer: Rohan Phillips

Camera: Nikon D300

Lens: Nikkor 17-55mm f/2.8G IF-ED

Exposure: 2 seconds @ f/6.3, ISO 200, tripod used.

Glenn's story: A family friend who was also my primary school reception teacher, is currently battling a form of liver cancer. He's spent well over a decade constructing a large model railway layouts. I'll post some pictures of it when I go to visit him.

-Some funny medical related things that happen here and there. As much as it sucks being so sick, there's still a humourous side to some of the experiences as well. I find that looking on the lighter side of things can help sometimes, having to deal with such serious issues can get pretty overwhelming.

Like a couple of days ago, I had one of several incidents with the liquid feed tubes parting company, although this was probably the most amusing. The enteral pump machine runs at 73ml per hour, and to give me adequate nutrition over the course of a day, is pumping Ensure into me for around 20 hours out of 24, starting at 6pm and stopping at 2pm the following afternoon. You have to order the bottles and feed lines which are then delivered by courier as needed.

Photographer: Rohan Phillips

Camera: Nikon D300

Lens: Nikkor 17-55mm f/2.8G IF-ED

Exposure: 1/60 @ f/2.8, ISO 1600

So after getting back into bed and turning my liquid feed pump on after refilling my water bottles, I neglected to actually plug the feed line nozzle back into my jejunostomy tube, leaving it in its little holder for probably a good half an hour or so judging by the results. After going to disconnect the tube again for a bathroom break, I looked down and discovered having the feed running Ensure in its holder was probably not the most effective method of meeting my nutritional needs.

Fortunately, thanks to my home-made feed machine transportation device, which my dad cleverly knocked up using parts from a pedestal fan, wooden cheese board, a metal bracket and some wheels from a TV cabinet, the puddle was contained to the cheese board section, as you can see in the picture below. As the saying goes, no use crying over spilt Ensure. (Sally gets the credit for coming up with that line.)

Photographer: Rohan Phillips

Camera: Nikon D300

Lens: Nikkor 17-55mm f/2.8G IF-ED

Exposure: 1/13 @ f/2.8, ISO 800

Which was much easier to clean up than when the tube comes out in bed, which has happened fairly frequently, gushing feed all over the sheets until I seal the tube up again. Which can sometimes take a while if I'm watching something on TV, and then start wondering why my back feels wet and smells funny, only to discover the feed has been going onto the bed for quite some time, necessitating a change of clothes and bed linen. Sometimes several times in the same night if I'm having a bad day with it.


And to end the post, here's a photo of a 'family dinner' from January this year, or as close as you can get to a family dinner when one of the people can't eat. At least I got to lie down and didn't have to bother with all that tiresome chewing and swallowing. And my 'food' is free. Sweet.

Photographer: Rohan Phillips

Camera: Nikon D300

Lens: Nikkor 17-55mm f/2.8G IF-ED

Exposure: 1/80 @ f/5.0, ISO 800 

Many more stories to come...