Scout V Crohn's Disease

I have Crohn's disease. Most people know this about me as I am an advocate for speaking out about 'invisible' illnesses and believe that opportunities to talk about poop should never be missed.

Having been largely neglected by the public health system for years (yes, even my GP is furious) I have been left with no other choice but to seek help from a private specialist to get this debilitating disease managed.

I have been unable to work full-time for many years but count myself very lucky that I have found myself a job that I enjoy and can do 1-2 days a week, in an understanding environment, with toilets close-by. I am also trying to continue my Master of Arts course online (part time), be involved in the roller derby community, and raise my family of cats with my supportive partner.

On the inside, I am in big trouble though. Without aggressive treatment, my body and guts will keep failing me. I don't want to keep putting off an awesome life because of Crohn's and the lack of education and funding surrounding this incurable disease.

I want to reach remission! I want to be able to go for a short stroll or go to the gym without being overcome with spontaneous excruciating pain and exploding poops. How about being able to lecture students without warning them about possible forthcoming toilet emergencies? Or being able to do the grocery shopping without the urgent cramping and shitting?

As my awesome new specialist keeps telling me: Crohn's disease is a very expensive illness to have!

There is a distinct lack of funding (and awareness) and the treatments, tests, surgeries, medications, and time spent in appointments and hospitals is ongoing, for life! I have just begun this journey with my new health care team to battle this and get my disease managed, but the costs are already climbing high.

This is where this creative/teacher/student needs to suck up any remaining dignity (Crohn's has stolen most of that anyway) and ask for your help.

I won't show you my bottom, but I will give you a quick overview of costs I am currently facing just to deal with Crohn's disease (let's not even touch mental health stuff, arthritis, and chronic pain).
Note: some tests and appointments are eligible for a small rebate from Medicare, but the rest is completely out of my own, tiny pockets. I am also super grateful to have a health care card, which means my prescriptions are not in the hundreds of dollars mark, per month.

Ongoing costs (looking at a year, most likely longer):
- antibiotics to clear active infections from a perianal fistula and prevent future infections ~ $30 a month
- 6MP: daily chemotherapy drugs ~ $20 a month
- Melbourne Pathology blood and stool tests that are not covered by Medicare ~ $52 every 6-8 weeks
- Specialist ~ $60 every 4-6 weeks
- Upcoming surgical consultation ~ $170 upfront to be paid before Medicare rebate

I am sure there are more costs, but they are the main ones I can think of, besides regular painkillers and heaps of toilet paper.

It is unconfirmed if I will be out of pocket for the in-hospital infusions beginning next week, but hospital parking and/or transport adds up, not to mention my partner and I missing a day of work every 2 weeks for the initial procedures.

Any amount you can afford to donate will help me on this journey to remission and alleviate some stress as I take on Crohn's Disease!

Photo by Tiff Stidwill