Me again, free again
Thursday, October 1, 2020
Julie Brown describes how Crohn’s disease and cancer led her to find new love, new life and softball
I was 14 when I found out I had Crohn’s disease. High school is hard enough, but having to tell your close friends about diarrhoea and always having to be on the lookout for bathrooms makes it much harder. This never-ending cycle of running to bathrooms, having accidents in my clothes and being in and out of hospitals to treat my Crohn’s flare-ups continued into my 30s.
When I was 32, I had just given birth to my second son. I had a pretty bad flare-up, which resulted in a week-long stay in the hospital. The doctors couldn’t perform the usual colonoscopy because my intestines were inflamed. I was then sent home, on steroids and other medications, with a colonoscopy scheduled for in a few months’ time.
Those three words
When I eventually had the colonoscopy, the doctor mentioned a few polyps but didn’t seem too concerned. A few days later, she called with the words everyone dreads hearing: ‘You have cancer.’ From that point, it was a blur. When I met her the next day, she explained that I would need to have surgery and that ‘my only hope was to find a good surgeon’.
The next week was spent speaking with doctors and surgeons, each with a different suggestion. I eventually decided on a surgeon, who recommended a permanent ostomy to help reduce recurrence. I honestly had no idea what an ostomy was, and I had never seen one! I did some Googling over the next few days, and my mind was blown. I didn’t doubt my decision, but I worried about how I would look and whether an ostomy would affect my quality of life.
Recovery was tough. It was hard to sit, but it was manageable. I was trying to get used to my new normal. I had to learn how to change my bags, care for my skin around my stoma, manage leaks, which panties worked best with an ostomy etc. It was a steep learning curve, but I was eager to move on and start my life.
The road to recovery
During this time, I experienced a lot of change. People always say that, when you are faced with death, you really start to evaluate your life. I can’t tell you how much that rang true for me. I had been unhappily married for a long time, and cancer gave me the nudge and the courage to make changes. I got divorced and started doing the things I loved again. One of those things was playing softball. At first, I was worried about my ostomy, but I realised I could wear a belt to cover it underneath my clothes to ensure it didn’t come loose if I slid. Once I had the courage to play again, I started doing more. I went swimming, on hikes, to concerts—I was myself again.
At some point, I realised that my ostomy had actually given me back my life. I was no longer scared to be away from a toilet; I wasn’t worried about crowds; my anxiety about accidents was gone. I had my life back. It’s strange, because I hear from those who have had ostomies how awful it was and how they couldn’t wait to have it reversed. For me, it was the opposite. I was suddenly able to do all the things I missed. I was able to enjoy things I had been avoiding because of my bathroom fears.
As I was finding myself again, I met someone and started a relationship. Dating with an ostomy… oh boy! We were just starting to get to know each other, and I remember not wanting to waste time or effort if he couldn’t accept my ostomy or my cancer journey. Right from the start, I was an open book and dumped it all on him: ‘I have an ostomy and I had cancer.’ Some people would run. Not him—he stayed and did research and started asking questions about it. He told me he didn’t think anything was wrong with having an ostomy. If it wasn’t for the ostomy, I might not be here, so I had nothing to be ashamed of. Seven years later, I’m married to that man.
Our journey hasn’t been easy. I had two sons, and he didn’t have any children. We decided to try. I knew it would be hard after cancer and with an ostomy. Trying to conceive was a struggle and stressful. We had miscarriages and then struggled to get pregnant. We made the decision to see a fertility specialist. It was October that year, and we were about to take a family holiday to Hawaii. I was stressed about not being pregnant, but we decided to relax, enjoy the holidays and see someone at the start of the new year. As we were preparing to head to Hawaii in November, I found out I was pregnant. It was a miracle! He proposed in Hawaii, and we were all overjoyed about the baby and our future.
Pregnancy and an ostomy wasn’t easy. I had a few blockages, a hernia and some gallbladder issues. However, we managed and pushed on. I had a couple of hospital stays to fix the blockages. Things were going well.
A supportive, curious and non-judgemental partner—that’s marriage material
About 6 weeks from my due date, I had sharp pains. I thought it was my gallbladder again and went to hospital. The doctors agreed my gallbladder may have been the cause. Due to my ostomy and history, we had a C-section scheduled on my due date with my gynaecologist and GP, in case there were any issues. The GP came by to see how I was doing. I explained I was in pain and hadn’t had any output from my stoma since I was admitted. Concerned, he removed my bag and looked at my stoma.
It was black. The blood supply to the stoma was being cut off, and emergency surgery was needed to remove the baby immediately. Ten minutes later, I was being wheeled into surgery without my fiancé. Our baby was delivered 6 weeks early. His lungs were not fully developed, and he was taken immediately to another hospital’s NICU. I had four surgeries, which fixed my stoma. Pregnancy was tough, but I would do it all again for our miracle son. He is now 3.
A new life to live
Having an ostomy isn’t always great, but, for the most part, I would do it all over again in a heartbeat. I am able to do all the things I love, and it has given me back my quality of life. I am me again. I am free again.
I didn’t share my ostomy or my story for years. I was ashamed of it, but yet I have always been grateful for the freedom and the life it gave back to me. I’m no longer scared to show it, to bare it, and to tell the world about it. My ostomy is a part of me, and I’m proud of it. I’m grateful for the part it played in giving me a new life to live.
Julie Brown lives in Masschusetts with her husband and three boys; she is a cancer advocate, foodie and softball junkie