Interview with Erin: Creator of InsideOut Ostomy Life
"Did something turn your world InsideOut? Me too…"
MEET ERIN. She is a 36 year old ileostomate, and creator of Insideout Ostomy Life.
Q: Tell me a little bit about yourself.
A: I was diagnosed with ulcerative colitis in 2006 and, even with a myriad of medications and weeks of IV steroids, within just over a year I was in emergency surgery with my bowel perforating. I was given a temporary ostomy, the first of four stomas.
Q: How would you explain to someone what an ostomy is?
A: An ostomy is a surgically created opening for body waste. The stoma is the mouth or opening that comes, in my case, out of my abdomen. I have an ileostomy which is a stoma created with my ileum or small intestine. There are many other types of ostomies, the most well-known one being the colostomy, which is created with the colon or large intestine. In many cases an ostomy is only temporary, in my case Squish (my stoma) is my fourth stoma and he is permanent.
Q: Tell me about your “new normal.” What is it like in comparison to life before surgery?
A: I was a different person before the surgeries, for many reasons, the main one being I had twelve surgeries over three years starting when I was 26, it all finished when I was thirty, so by the time I actually felt human again I was in a different stage of my life.
Pre-surgery I had been a lot more extroverted with what I had at that stage considered many friends. I was the life of the party, out most nights.
Post-surgery I am happier to stay at home or go hiking or to the gym with my husband and have a handful of close friends that supported me through some of the toughest times of my life. I have also found a new group of friends in the ostomy community. As far as what I have done since becoming an ostomate the list is endless. There is nothing I can’t do now that I couldn’t do post op, and to be honest I am even braver and more secure in who I am now than I was before, and I appreciate life and all it has to offer more.
Q: What’s the "strangest" thing to get used to about having an ostomy?
A: After the fact that you have something attached to your stomach twenty-four seven, it’s the fact that you actually become fascinated with the output and if you’re lucky enough to have an ostomy support group or friends with ostomies, then the conversations you will have, no topics are taboo, it could crack up even the most straight laced waiter over coffee.
Q: What do you wish the general public knew about having an ostomy?
A: The whole invisible disability comes to mind. For years I looked well on the outside but was dying on the inside. The looks you can get for using a disability toilet or seat can be frustrating but on the flip side it’s important to know that we are human and can do anything if not more than we could before we got an ostomy depending on the conditions you get it under.
The following is an excerpt taken directly from Erin's website. A link to her site is included below.
Few tips I have for new Ostomates:
Take one day at a time
Give your stoma a name - I believe I named it as a way to disconnect myself from it before I left the hospital. It gave me something to get angry at without getting angry at myself.
You are not alone
The more I prepared for this and read other stories online the more I realised I was never alone, even though I really felt that way at the start.
Ask for help – there are a myriad of people who can help
Stomal Therapy nurses
Support groups (at WA ostomy and online)
Friends & family
If you eat beetroot or drink red slushies your output will change colour, you are not bleeding internally
Some medications will come out your bag whole, make sure you talk with your doctor if this happens to find a suitable alternative
Showering truly naked is amazing, just be prepared and don’t have the water too hot as your stoma will burn
Fish is the worse smell ever whereas least KFC will come out smelling like KFC – I’m not sure what they put in those herbs and spices but they are potent.
And lastly it’s better to laugh than cry but it’s ok to do both, sometimes at the same time.