Breaking the Silence

by Charmaine Taylor
(from Ostomy Canada Magazine – Summer 2013: Volume 21, Number 1)

“An ostomy is OK – So am I”, says Charmaine Taylor on life after surgery.

I was only 20 years old when I was diagnosed with ulcerative colitis back in 2004. It was the biggest shock of my life. I had to accept the fact that I had a chronic illness and that I had to swallow several pills every day for the rest of my life. At that time, I didn’t yet know a bigger shock lay ahead.

I had noticed that something was wrong when I had had severe diarrhea for days and, sometimes, even bleeding. As days went by I also started to have cramps and to feel bloated. A visit to a gastroenterologist led to a colonoscopy and a diagnosis of Ulcerative Colitis, a type of Inflammatory Bowel Disease (IBD), which affects the large colon. Symptoms vary from one person to another and researchers still do not know how this condition originates. One theory suggests that it is due to environmental factors, since it’s commonly seen in well-developed countries; other theories suggest that the origin is genetic.

I was devastated every time I had a flare up. That meant the inflammation was acute and I needed to take anti-inflammatory pills. Over the last seven years I had been prescribed all the medications available on the market, including intra-venous antiinflammatory treatment. I had high hopes for the last treatment and I never imagined that it would stop working after a few sessions. Deep down I knew that the last resort was surgery, but I was too scared to just think about it. I was not ready to take that step yet.

As the days went by and my symptoms worsened, I made an appointment to see a surgeon. I had two options and not having surgery wasn’t one of them. I was told I could opt for J-pouch surgery, in which the large colon is removed while a ‘pouch’ is made out of the small intestine, which is then connected to the anus. In this type of operation, a temporary ileostomy is made which is then reversed when the pouch is healed. The second option was a permanent ileostomy, which consists of removing the large colon and bringing the end of the small intestine (ileum) out on the abdomen, leaving an opening called a stoma. Intestinal waste would then pass through the so called stoma and would then be collected in a bag.

I opted for the permanent ileostomy and June 10th was the big date. At that time I was trying to fill my days as much as possible, so that I wouldn’t think about the surgery. After a few weeks, I met the stoma care nurses who were very helpful and supportive. On my first visit they showed me the infamous bag and also gave me a couple of bags to take home with me so that I could get used to them and to the idea of using them, before my operation. I had so many questions running through my mind like: what am I going to expect after the surgery? Do I have to change my entire wardrobe? What about noises and odours – would they affect me while socialising with others? What about sex? Would I be rejected? Would pregnancy and exercise be possible? The following weeks passed by so quickly. I couldn’t believe that the surgery was over until I felt the bag when I woke up in the recovery room.

Eight months have now passed since my operation. My life hasn’t been a bed of roses but neither has it been an uphill struggle. Looking back, I’d say that this was just another of life’s challenges. With time, the incision heals and the pain is something I can now barely remember. Looking back at this rollercoaster ride, I have learned that, through openness, people will understand your position and that, with knowledge, people become more aware and understanding.

Life naturally has its ups and downs. There will always be another corner to turn or another hill to climb but life can and does still go on. One can choose to be a passenger and just go along with the ride, or to take advantage of the journey and steer your own course. I chose the latter. I still wear fitted clothes, I still go the beach, I still exercise, and I eat everything. The only difference is that, nowadays, I use the bathroom in a different way.

At first I was very conscious about the bag. I kept on checking it over and over again. That’s to say nothing of the look in the eyes of the people I met. I used to think that everyone was looking at my stomach or that someone had noticed something under my clothes. Before the operation I had the liberty to keep on or take off the bag when and where I wanted to, but now I don’t have any choice other than accepting my new me and learning to cope with the way I am.

I have made some small modifications of course, just like any other change brings along like for example, moving out of your parents’ house and start living on your own, having children, changing a job where you have different working hours and so on. Positive thinking helps a lot in this case and I have had a lot of positive things to be grateful for such as no more pain, no more pills, no more going in and out of hospital, no more hospital and clinics visits, and that’s without mentioning the loads of toilet paper I have saved.

Best of all, I can now start living my life and not just existing. I have succeeded in living a normal life especially with the help of my loving husband who has encouraged me to start swimming and exercising again. Over time, I have regained my energy and my confidence. However, I still had an issue, which I was not so confident about. And this was intimacy. My husband’s support and reassurance have put me at ease. At first I used to feel very embarrassed and not sexy enough for him. I feared rejection, but slowly I overcame this fear as well – and there’s lots of sexy underwear that would suit anyone who’s had an ostomy.

I cannot change or forget these last seven years of my life, but as Carolie Raia Darsey Malloy said “I am strong because I’ve known weakness, I am compassionate because I’ve experienced suffering, I’m alive because I’m a fighter, I’m wise because I’ve been foolish, I can laugh because I’ve known sadness and I am open to love despite the pain of loss.”

As you can see, I was very lucky to find a lot of help and support from the people around me. Thanks to my experience, I want to stress the importance of the support by relatives. Being accepted as you are by those close to you, really help you to accept your ‘new’ body yourself, and to take that important first step on the long road of recovery.

I wanted to publish this article to say thank you to my surgeon and all the medical team who assisted me, to the stoma nurses and all the other nurses who helped me throughout, to my family and friends and, last but not least, to my husband. Most of all, I wanted to talk about my experience to encourage future ostomates not to be afraid or, worse, embarrassed. If you are putting off surgery, I hope that this article will be a ray of light for you. Keep in mind that a stoma does not stop you from doing the things a normal person does. It’s the person himself or herself who creates such obstacles. Out there, there is a life waiting for you to be discovered, lived and enjoyed till the end. Keep in mind that people have one thing in common: we are all different.

Not every case of inflammatory bowel disease (IBD) leads to surgery but left untreated, IBD could turn into a malignant disease. Several patients respond to the treatments that are available. Still, in a small percentage of cases the medications stop working after a short while, which is what happened to me. When I went for my post-op visit, my surgeon told me that I had an early stage of colon cancer and that I had taken the best decision at the right time. I thought I was dreaming or that I have misinterpreted her words but I wasn’t.

In the end, the ostomy bag has saved my life. It’s a pity that, nowadays, while we talk about colon cancer we shy away from talking about the cure. Many people still have a negative view about this surgery and this is mainly because there has been little attempt to generate awareness so far. My wish is that someday there will be a support group, as we need to educate people more and more and at the same time support ourselves.

I understand that everyone is free to take his or her own decisions in life like, for example, Farah Fawcett Majors who decided to die rather than having an ostomy, but I think that that is a pity. Others live their life in misery trying to accept and embrace their new body when, with a little bit of help and support from the people around them, they could manage to live their life to the full.

Many people – and that includes me – will say that this operation was a blessing as they started living once again after many years of suffering. Nowadays I have the peace of mind and the freedom to go out, as I am more in control than ever. I have my confidence and the energy back, which I had forsaken a long time ago. A part of my intestine may be missing, but I’m still me and I feel better than I ever did. If you need surgery, don’t be afraid. You’ll be better than ever. Trust me.

Re-printed with permission from the article’s first appearance in A&H, a health and wellbeing magazine published in Malta. Photos: Pippa Zammit Cutajar
Charmaine Taylor is the founder of the group Giving Ostomy A Voice – find out more here.

“Breaking the Silence” first appeared in the Summer 2013 edition of Ostomy Canada. You can become a subscriber to our glossy, full-colour publication of Ostomy Canada by joining Ostomy Canada Society. Find out more here.

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