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My journey with chronic illness

Hi, my name is Josie. I’m 21 years old and am from Melbourne, Australia and this is how I got my ostomy.

I was born with an anorectal malformation/imperforate anus. I suffered majorly with chronic constipation throughout my whole childhood. I relied on multiple laxatives & daily enemas and only went to the toilet once every 4-6 weeks and required general Anaesthetics regularly to clean me out.

When I was 14 I had a surgery called an Appendicostomy or an ACE for short. It’s a stoma created from my appendix and tunnelled through to my bowel where I would administer enemas daily. Unfortunately this came with lots of problems and complications so I pushed to have it changed to a colostomy.

Having the colostomy was so much better than the ACE.

But still didn’t resolve my issue of chronic constipation. I was suffering with vomiting, nausea bloating, blockages etc.

I was then diagnosed with Gastroparesis & Intestinal dysmotility which explained most of those symptoms. I had an NJ (nasojejunal) tube for 1.5 years – an NJ tube is a feeding tube that goes to your jejunum (small intestine). It was then changed to a jejunostomy tube.

In this time I also had frequent flexible sigmoidoscopies to empty my rectal stump – one time I woke up not being able to urinate. I needed to be catheterised to empty my bladder and after lots of testing I was diagnosed with Neurogenic Bladder. I now have a Mitrofanoff Stoma, which is a stoma on my abdomen I catheterise to empty my bladder.

After about 6 years of having my colostomy and having no improvement with gut function it was decided to change my stoma to an ileostomy and not use my colon anymore. I’ve had this for a year now and it’s been so much better

I’ve also been diagnosed with Ehlers Danlos syndrome & POTS.

If you’ve read this all,

Thank you


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