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Living with IBD and a stoma

Hello my name is Sam and I’d love to share my story of living with IBD and a stoma.

I’ve always had some irritable bowel symptoms over the years but didn’t think much of it. Then when I was 17 weeks pregnant with my first child in 2012, I had bleeding from my rectum. The doctors put it down to internal haemorrhoids. After I gave birth my symptoms worsened, further bleeding and mucous loss, abdominal cramps, lethargy and anaemia, which made caring for and breastfeeding a newborn baby arduous.

A colonoscopy diagnosed Ulcerative Colitis (UC). Prednisone helped a little but gave me shocking mood swings, depression and insomnia. I tried oral immunosuppressants, Imuran, which wasn’t much better. I was having medication rectally once or twice every day, we’re talking 100mls of liquid and me trying to hold it up one very inflamed rectum, so it could be absorbed…. it was horrendous.

Things got worse during my second pregnancy in 2015, I started experiencing urgency, not making it to the toilet in time and having accidents even when out in public which is humiliating and gave me terrible anxiety.

With the help of my gastroenterologist we tried IV biologics, Infliximab then Vedolizumab, all strong immunosuppressants which carry their own side effects and possible reactions. While I had some early signs of improvement, ultimately things got worse. By early 2017 I was on the toilet up to 30 times a day and in agonising pain, I would often compare it to the pain of childbirth. Trying to care for a one and three year old was difficult to say the least. I was so over it! Surgery was the next step, by this stage I was so ready to have it done.

I have worked as a registered nurse for over 14 years, most of this spent working on a colorectal unit, caring for patients after surgery, many of these requiring a stoma. I have cared for countless patients over the years with their stoma care in those early postoperative days, supporting them and their loved ones with this change. This insight and experience I knew would benefit me greatly but the prospect of having a stoma of my own was still a little daunting.

I had my colon removed in April 2017 and haven’t looked back. I felt better than I had in a long time very soon after the surgery. I have an end ileostomy; my stool goes into a bag which I empty into the toilet as needed and change every two days. It’s a small consolation for getting my life back.

Crohn’s disease was found in my colon, when it was examined and tested after removal. My diagnosis changed to Crohn’s Colitis, in other words Crohn’s disease in the large intestine/colon. I’ll most likely keep my stoma for life, I don’t want to risk the initial plan which was to form a j-pouch (in other words further surgery to remove the stoma and re-create my internal plumbing minus a colon), as the risk of it failing is much higher with Crohn’s than Ulcerative Colitis.

I’m just so grateful for my stoma, it has truly given me my life back, given my family the wife and mother they deserve.

The experience has taught me to appreciate the little things in life and not take anything for granted. Our daughters are now four and six years old. My grandmother died in her thirties from Ulcerative Colitis when my mother was only three. I often thought of her when I was unwell, I found that gave me courage and appreciation for my second chance at a life without pain from IBD.

I returned to work 12 weeks after my surgery. I really missed nursing after being unable to work for so long before my surgery that I enjoyed it more than ever. My interest in stomal therapy peaked and with the encouragement of my supportive husband Shane, I completed my Stomal Therapy degree in 2018. I have been able to work part time in the role at my hospital which I have really loved. I have participated in three City2Surfs, the first four months after my surgery. I felt elated, to be able to take part in such an event without the anxiety of the nearest toilet. I was able to raise funds for Crohn’s and Colitis Australia (CCA), a charity close to my heart. I am hoping to run my first half marathon later this year.

I started an Instagram account soon after my surgery, @aussie_ostomate. It has been great to share my story and any advice I can offer as an ostomate and stoma nurse. It has been wonderful to meet others online who have been through similar health highs and lows, either IBD, stoma related or both. These contacts have led to face to face catch ups with fellow younger ostomates in Sydney, building friendships which will last a lifetime. These connections have played such a positive role in my recovery and adjustment to life with a stoma, I feel like I’m not alone.

I am excited for the future and what else is in store. I look forward to raising more awareness for inflammatory bowel disease and stomas and assisting others in their recovery.

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