I’m only 16, but choosing to have a colostomy bag has saved my life

I was born 11th August 1999  and live in Melbourne, Australia. I was born 4 and a 1/2 weeks premature and spent five days in Neonatal care and then three days on the ward.

If I remember rightly my first meconium pass was at approximately 24hrs. From that day forward my bowel movements were anywhere from 10-16 days apart and this was only because my mum and dad spent days stimulating my legs with the up and down movement.

Eventually after a month of this mum mentioned this to my maternal child health nurse who said, “Oh not to worry she is a breastfed premature baby who more than likely has lazy bowels – when bathing her tonight get your husband to pop his finger around her bottom to help stimulate her sphincter”. So this was our routine every 14 days for the next approximately 2 years.

Weekly other family members would yell at my mum saying “You’re crazy this is not normal you need to go to the doctors”. Of course every time her reply would be “What would you know? My nurse said this, she would know better than anyone”.

Eventually with time they realised that something was not right. Finally, they took me to the GP.

After many appointments, more prune juice, Coloxyl drops etc. he referred us to a Gastroenterologist. 

The first thing he did was a Bowel biopsy to determine whether I had Hirschsprung’s disease which came back negative. However he did say that I had a very large bowel and he thought it was just a lazy consequence of my premature birth.

From that day forward I was on every laxative in stock – or at least, that’s how it felt.

Twice I was admitted to Monash Medical Centre where I had a nasogastric tube inserted and I was given litres upon litres of GoLightly liquid followed by days, weeks and months of stored poo.

The frequent appointments, laxatives,  pain and as I would say ‘giving birth to a child size poo’ went on until I was 11 years old, until one day mum had received a phone call from my school to tell her that I’d completely lost control and soiled myself.

Unknown to my mum I had been soiling for months and throwing my underwear away only to blame the dog for chewing them up.

That very day mum called our gastroenterologist who luckily had a spot to see us that day. Mum said that enough was enough –  there had to be something he could do.

I was then sent off to Cabrini Hospital for an Anorectal Manometry test. A day we also will never forget.

There it was noted that both of my internal & external Sphincter muscles where anteriorly Attenuated (as expressed to us paper thin) and also my brain was sending me mixed signals to squeeze instead of relax.  

My doctor told my mum and I to think of it like a fist in clench motion – this would be my Anal Sphincters 24hrs a day!

Our gastroenterologist from this report started Botox injections into my muscles under General anaesthetic approximately 4-5 times over a period of one to two years. In between these procedures I had a partial rectal prolapse with mucosa popping in and out every time I pushed for a bowel movement.

By now I am a 13yr old teenager soiling daily and getting very upset and angry that nothing was helping.

So, in a last attempt, my mum emailed our gastroenterologist requesting a second opinion.

The very next day we were seen by a fantastic colorectal surgeon and 5 days later I was admitted to Royal Children’s Hospital Melbourne for an evacuation of stool and to have a look at what was happening on the inside.

I was referred to see a Urologist (who also specialises in colorectal) at the RCH Melbourne who is my current surgeon.

March 5th 2014 I had an Appendicostomy formed which worked great and kept me clean for a straight 24hrs but this only lasted for six months before my muscles again kept burning and my rectum once again had prolapsed.

To cut a very long story short after lots of conversation my big decision resulted in having a colostomy bag.

So December 3rd 2014, at the age of 15, I had a sigmoid Colostomy formed.

And all I can say is: Wow.

It’s made life so much better and much more manageable.

I don’t think I’ve ever felt so good before! I definitely do not regret my ostomy at all. It’s saved my life. 

Words by Josie Edwards

3 thoughts

  1. I can relate to you. At age 30 I was constantly soiling myself and tried to hide it. I wore pads all the time. The doctors never said anything about my sphincters but I am sure they were just like yours. I have crohns and was diagnosed at age 15. I just had my colostomy surgery 3 weeks ago and I don’t regret it. I am so glad you don’t regret yours either and you are happy! 🙂 at such a young age you are showing great maturity and have so much to live for and now you can enjoy it! Wishing you health and happiness! 🙂

    Like

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