I was diagnosed with Ulcerative Colitis (UC) in 2006 after continuously being run down, losing weight, having poor appetite and mood. It was kept at bay with a myriad of tablets for about a year before I started getting severe abdomen pains and continued to lose weight. After three visits to the hospital, weeks of IV steroids, 13 days awake straight and 20 kilogrammes dropped in less than a month, late 2007 I ended up in emergency surgery and received a temporary ileostomy I called Squish. This was one of the most challenging times of my life. Before UC I considered myself to be an outgoing active person and used to pride myself on being the life of the party. Now I was severely depressed and couldn’t look at myself in the mirror without crying, let alone leave the house and be social. Luckily I had some amazing friends that stood by my side (sometimes literally holding me up) even when I was pushing them away.
"I was severely depressed and couldn’t look at myself in the mirror without crying."
I recovered well and I felt human for the first time in a long time, so I proceeded with the next scheduled surgery to create a J-pouch and received Squish 2.0. Things went wrong from here, instead of recovering as well as I had the first time I got sicker and spent many nights in the emergency room including New Year’s eve 2008. They found I had peri-anal fistulas, my body was rejecting the J-pouch and I had red bumps on my legs (Erythema Nodosum) that caused so much pain when walking, that at the age of 29 I was required to use a walker to keep some independence. I was overwhelmed and I unbelievably felt worse than before it all began. I was again on a myriad of pain medications, antibiotics and steroids that generated mood swings and the world notorious round face on a bone-thin body. I had a few different surgeries to fix the fistulas and save my J-pouch and October 2008 I had my ileostomy reversed and began the path to recovery.
I was well for about two months before it all went pear-shaped again and by Christmas 2009 I was in unbearable pain and after many consultations with my surgeon we decided to give Squish 3.0 a try while we looked at other options. I underwent a few more minor surgeries and it became clear that the options for reversal were running out. Luckily I met my future husband in November 2009 and I began to start thinking about the quality of life. I started looking around for second and even third opinions about my situation and where to go from here. It was are this stage I began to realise that while reversal was still an option the quality of life I would expect with it was not going to be great. In July 2010 I made the decision that Squish was meant to be part of my life and underwent the final surgery to remove my rectum and create Squish 4.0. Unfortunately, as Murphy’s Law would have it, my rectal wound broken-down and another surgery was required to fix it. In December 2010 I had my final surgery which left me with an open wound the size of a fist and the thought that I would never be able to flop on the bed again without pain, however, three months later it healed and I began to plan my future.
"I began to start thinking about the quality of life."
Overall I ended up having five major surgeries, seven minor procedures, countless hospital and specialist visits and four different stoma’s. And although it was a painful period of my life I wouldn’t change a thing as I would not have been the person I am today and would not have the adoring husband that took me scars, bag and all. Having a stoma has not stopped me from doing anything, actually I think it has even made me braver and definitely more aware of what life has to offer and that I should never take it for granted.
Since becoming an ostomate, I got married in Thailand, travelled to Bali, hiked through Malaysia, climbed the Sydney harbour bridge, and ran the city to surf just to mention a few. I am currently training for a fitness competition and go to the gym with my partner six times a week, and alternate between rock climbing and hiking on our off days. We also have an amazing trip booked to the USA in January next year which will see us battling subzero in New York and Washington, prior to heading to Florida to explore Disney World and Universal Studios and then on to our most daring adventure, a clothing optional (nudist) cruise out of Tampa for nine nights with 3,500 other naturalists. Before having a bag I can honestly say I would never have dared to even imagine myself in such a situation but now after everything I have endured and the loving support of my husband, this seems less daunting than the bag itself did at the beginning. That feeling may change as the time approaches but nevertheless, I know I am brave enough to deal with anything I encounter.
On top of all this, I am heavily involved in the ostomy world, being what I would consider an advocate for all people with ostomies, in particular, removing the stigma associated with having a bag and the illusion that only elderly people have one. I have volunteered at the WA Ostomy Association for three years, one when I first became an ostomate before going back to work full-time and another two since choosing to go back to part-time work so I could invest time with the WA Ostomy Association. I have been fortunate that I have been a member of the management committee as the treasurer since returning to the association and have recently been elected as President, I am the youngest person to hold both of these positions in the 48-year history of the Association.
During this time I have had the pleasure of setting up a Facebook Page, an online and a variety of face to face support groups for the association and our members, these groups continue to grow month on month, the online one supporting over 150 local and international ostomates. I have also with the help of the committee opened the association on a Saturday once a month, which has enabled new volunteers to give back to the association and a different dynamic within the volunteering pool. As part of Saturday trade, I have organised the monthly get-together support groups for new and old ostomates, which we invite reps and speakers when called for by members. Starting next March we will also have our stomal therapy nurse in attendance during Saturday trade and for the newly moved new member’s afternoon tea meeting. This will enable working people access to a stomal therapy nurse outside the normal working week and give new members access to the workings of the association and other ostomates. I have also been nominated by ASCA as the youth coordinator at the recent conference, a challenge I look forward too and hope to get more involved in once returning from the USA in March.
As an ostomate, in the beginning, I felt unbelievably alone and believed I was the only young person with a bag. This is why I am so passionate about support groups and removing the stigma associated with having a bag. I don’t want anyone to ever feel as I did at the start, the groups I have created are a start to ensuring there is support out there for all ostomates young and old. Even with support and 10 years on, I’m not saying it’s always easy as it’s not. I still have days where is gets me down, when my skin is bleeding and Squish is not behaving himself, yes he is a male. The only difference is I don’t let it define me, I am capable of doing anything I put my mind to and believe the same of every person who has undergone stomal surgery. As for the future, the best is yet to come, I passed my adoption medical recently, which was no small feat as I was stressed that my health would further impede our opportunity of becoming parents. We are one the local and international lists and we believe we are well on the way to adopting a young person from Thailand. However, even if this doesn’t come to fruition. I know that my life has a direction and a purpose and I will live a happy long life.
"I am capable of doing anything I put my mind to and believe the same of every person who has undergone stomal surgery."
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
- Your Association
- Stomal Therapy nurses
- Support groups (at WA ostomy and online)
- Product reps
- 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 then cry but it’s ok to do both, sometimes at the same time.