JILL’S FULL LIFE
Jill Corbett, who co-organised the fundraiser Newcastle Bowel of the Ball in June 2012, shares her story about colitis, colon removal, and moving on
Relief with Diagnosis
I had diarrhoea for six months straight before I was diagnosed with irritable bowel syndrome in July 2008. The GP did a blood test, told me I had IBS, then said I should come back if I should start passing blood.
When I did start passing blood, it took me three months to tell anyone because I was so scared and I thought it might be cancer. When I finally saw a gastroenterologist, who did a colonoscopy and gastroscopy, I was diagnosed with ulcerative colitis. I was actually relieved to get this diagnosis, and thought “Well that’s an explanation for all my troubles.” It certainly explained all the problems I’ve been having for years: bad mouth ulcers, rashes, massive bloating after every meal, severe fatigue, sleeping away days, and many more irregularities. By the time I was diagnosed, my symptoms also included severe belly pain and alternating between constipation — for up to a week! — to constant bloody stools.
Getting diagnosed made me feel okay about telling close family members and others who I felt needed to know. I was still embarrassed, but at least I had an explanation for why I kept needing to go to the toilet! I also told my work mates, because I do shift work, including 12-hour shifts.
Life as Normal
My gastroenterologist initially put me on a low dose of Salafalk granules to help alleviate the symptoms. At the time, I only had 20 cms of disease in my colon and was sent on my merry way.
In all honestly, I did not take my disease as seriously as I should have. For me, the diagnosis was just an explanation for why I was sick, and I still did my utmost best to continue life as normal. I did try different diets but none really helped, much to the dismay of some people who think bowel disease is purely about what you’re eating, implying that I was making myself sick with what I ate.
Anyway, I still continued going to bootcamp and partying with all of my friends until I would get really sick and have to take some time out, but even during this time I never stopped working. I actually am proud to say that I never took time off work because of my disease! I wasn’t going to let it impair me. I even booked a European holiday of a lifetime! Unfortunately, it was during my six-week tour that I began to get very sick, and ended up in hospital in Greece.
As soon as I got back to Australia, I went straight to my specialist, who started me on steroids immediately. I was too sick to have another colonoscopy and he performed a sigmoidoscopy which now showed that my entire colon was severely diseased.
On top of all this, I experienced all of the side effects from the steroids, including the fat face and the hunger. I also started to lose some eye sight. I had pretty much every side effect that was listed on the bottle, in either a small or big way.
“No Hope of Getting the Colon Better”
The decision to remove my colon was made by my doctors after I had spent three solid weeks in hospital. While I was in hospital, things got so bad that I couldn’t roll from one side of the bed to the other without pain and needing to run to the toilet. They put me on cortisone injections every six hours, plus infliximab and cyclosporine. One by one, each treatment failed. It was heartbreaking. I couldn’t do anything to get my body working and I was eventually told that if they did not remove my colon, I might not survive, as my bowel could perforate at any time and there is no hope of it getting better.
In the meantime, I had lost a lot of weight. I was a walking skeleton with a moon face and I had no energy to move. I had no idea why my disease could come to this, and it was very surreal walking into hospital one day and leaving four weeks later with an ileostomy bag and without my colon!
Again, I put on my best brave face as I started a new dream job only three weeks out of hospital and tried to live as normal as possible again, including bootcamp, regaining my muscle mass and strength, and going out with my friends.
I have had three surgeries since my colon was removed, and have been seriously sick with a lot of complications. It was during this time that I realised that if I survived this, I wanted to help people. I wanted to get awareness for this serious disease.
Eventually, I took a turn for the better and made my way back to living and even going through a fourth surgery — to remove my bag — relatively problem-free.
Back to a Full Life
I am now 100% disease free and living life to the fullest. I now take no medication at all bar my required supplements, which include iron, a Vitamin B12 shot every three months (along with my general checkup), Vitamin D, and folic acid. I still get very tired and don’t bounce back as quickly as I used to, but I just rest a bit more than before and that solves the problem.
My advice to others with IBD is: take your condition seriously, learn the possibilities, but don’t let it rule your life. Live life to the fullest when you can and rest when you can’t! Although I had a horror experience with surgery, it all worked out in the end and it is honestly the best thing that could have happened to me. I now live my life without fear that I won’t make it to the toilet or that I will be pain or I don’t know if I will be well for a special event. Having surgery has given me back my life. So don’t be afraid of a bag that may be temporary, for a lifetime of living.