Sharing about my struggle through multiple misdiagnosis.

It has become a true passion of mine to share my story. Not just to anyone that is willing to listen, but specifically to those that have an opportunity to make a difference in the lives of other patients. Whether it be clinicians, surgeons, nurses, medical students, physicians, or even other patients- my goal in sharing my journey is to help others.

It has become a true passion of mine to share my story.

Sharing about my struggle through multiple misdiagnosis.
Expressing the struggles I faced through multiple misdiagnosis.

Today, this special group of life changers were the nurses of Scripps Health. Nurses from multiple Scripps Hospital locations join together quarterly, to learn about how to better care for patients with various wounds and/or an ostomy. This course is put on by Scripps’ amazing team of Wound Ostomy and Continence Nurses (WOCN’s), and it is such a privilege to present alongside such a dedicated team. After the class reviews the “basics” of ostomy care: what is an ostomy, the different types of ostomies (ileostomy, urostomy, colostomy, etc.), ostomy pouches and pouching techniques, the do’s and don’ts, possible parastomal skin complications, and how to change/empty an ostomy pouch; the class is then introduced to me.

During my presentation I share significant moments in my life; from the start of my symptoms, my struggle through misdiagnoses, my final diagnosis of Crohn’s Disease, my 8-month hospital stay, and of course my ostomy surgery. I really emphasize what life is like with a stoma, the positive aspects of my life because of my ostomy surgery, how nurses can better support their ostomy patients, resources and tools to provide to their patients, as well as answering any questions they may have. I am always very honest and extremely open, even with the most intimate details of my life- because the reality is, having ostomy surgery is a very intimate thing. Because of this, not everyone likes to share; which is another reason why I do- so that hopefully, one day, less and less people living with an ostomy are silenced by the stigma.

-because the reality is, having ostomy surgery is a very intimate thing.

Sharing about my passion to raise awareness for other ostomy patients, like myself.
Sharing about my passion of raising awareness for ostomy patients.

After every one of these courses in which I have shared my story, I am encouraged not only by the WOCN’s who arrange the class, but also by the nurses attending. “It is a breath of fresh air to hear from a patient”, one nurse told me. Providing insight into positive patient perspective, allows nurses’ perspective and approach towards ostomy patients to be changed as well. It is an incredible opportunity to influence and encourage these nurses, and to remind them to approach ostomy patients with a little more compassion and patience. But most of all, it is motivating to continue to raise awareness on behalf of ostomy patients, to promote life for the better because of ostomy surgery, and continue my passion of sharing my story in the effort to change lives.

Providing insight into positive patient perspective, allows nurses’ perspective and approach towards ostomy patients to be changed as well.

Sarah Squire Embraces Life with a Stoma

I had colostomy surgery in 2007, aged 34 due to a rectovaginal fistula. Colostomies were for old people, not for a young(ish) mum with a full time job. How would I go to work? Would I smell? Would people be able to tell? Would I every wear jeans again? Can I go on holiday? So many questions but also an absolute terror.

I knew I needed the stoma as the fistula symptoms were horrendous – a connection between rectum and vagina meant I was passing stool uncontrollably the wrong way and it was completely mortifying. But I still wasn’t sure I could cope with a colostomy and also live a normal life.

My brilliant stoma nurse Simon managed to calm me down and explain that it really wasn’t the end of life as I knew it, and when he said “Sarah, children do this” it was a turning point for me. I had to get a grip and get on with it. I still didn’t like it and the early days were a struggle – psychologically as much as physically and although it felt like a long road I found great support, initially from the Ostomyland forum online and then also the Colostomy Association (CA). I went back to work full time, began managing my stoma by colostomy irrigation and you know what, life was OK. I didn’t smell, nobody could tell I had a stoma, I could wear jeans and we had an amazing family holiday in Florida a few months post op.

I began volunteering with CA and the more I did the more I loved it. I am now a Trustee and heavily involved in many areas of the charity. I absolutely love it and have met so many friends for life along the way.

As for the fistula, I had seven repairs in total and although the final one was a success, the multiple surgeries had damaged my sphincter muscle. Reversal would lead to incontinence so the stoma is staying. I am happy with my lot as there is no point in dwelling on what could’ve been and although I will never love my stoma, in a funny way I am grateful as it has indirectly resulted in a new lease of life for me in my work with CA. Life with a stoma is great.