You're Not Alone!

You are not alone! Many people in Canada are living happy and fulfilling lives through managing their ulcerative colitis. They are mothers and fathers, partners and friends. They are working, studying, playing, travelling, caring for others and having fun. Below are some inspirational stories from Canadians like you who live with UC. They have shared their stories to help encourage others and offer ideas on managing UC.

Karen,*

age 51

Ottawa, ON
Diagnosed at age 46.

“Now, I live a normal active life. I’ve learned to listen to my body, avoid stress and be creative with my cooking.”

MEET KAREN
In the beginning, I had no idea what was happening to me, and I was really scared.

I had cramps and severe diarrhea with lots of bleeding. I went to my family doctor who sent me to a gastroenterologist. He confirmed my UC with a colonoscopy. I had just come through a really stressful period. I was recently divorced from a 30-year relationship. Not only had I lost my husband, but also his family and our mutual friends. I had to move in with my father and brothers (and their dog and three birds!). I had also just left a very stressful job and started a new one.

When I was first diagnosed, I had to take a couple of months off work. I also had to go on a really strict diet. But by sticking to that diet and taking my medications, the frequency of going to the bathroom lessened and the bleeding slowly stopped. I felt I was on the road to recovery.

If you asked any of my friends what my passion was in life, they would say “her love for FOOD and cooking!” So following a strict diet was really difficult for me. But after reflection, I was really proud of myself. I proved to myself that I could be really disciplined. I began to believe that if I could do that, I could do anything in life!

Week by week, I started to incorporate different foods back into my diet. At first I was afraid, but I was also excited. I craved everything! But I had to listen to my body. If something didn’t agree with it, I took note.

I also started to exercise again. My specialist recommended yoga at first, because it’s not too strenuous. It’s also a great exercise to relax and it’s good for the body and the mind. Eventually, I started adding weights and running, always being mindful of my body’s responses.

Eventually, I left my Dad’s house and bought a condo. I also started dating! At first I was a little hesitant, because I was self-conscious and I wasn’t sure how he would react to finding out I had UC.

He started asking me over for dinner, and noticed that there were things I was careful about eating.

So, I told him about my UC – that I was on medication and that I was in remission – but that I had to be careful about food. It went really well – and I didn’t scare him off!

Now, I live a normal active life. I’ve learned to listen to my body, avoid stress and be creative with my cooking.

I know I have to take my medication exactly as prescribed for as long as my doctor says. But that’s okay with me. I want to encourage people. It’s so easy to feel helpless and overwhelmed about this disease. Don’t let things stress you out or get you down. If you do relapse, go with the flow and remember, you’ve already been through it once – you know what it is and that you can go back into remission.

Try to focus on the good and positive things in your life, and the things that make you happy. I have four cats and they make me so happy! I also enjoy my family, friends and boyfriend.

Be patient. Things will get better. You can still live a normal, active and healthy life!

* Based on a single patient experience. May not be representative of all patient populations.

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Pam,*

age 27

Abbotsford, BC
Diagnosed at age 22.

Pam,*

age 27

Abbotsford, BC
Diagnosed at age 22.

“Attitude is also very important. You can’t get down on yourself and be negative. I try to avoid negative people and situations.”

MEET PAM
When I first started having symptoms of UC, I had no idea what it was.

I was living in Ontario at the time and was away from my family and my regular doctor. UC doesn’t run in my family, and isn’t common amongst East Indians, so I went undiagnosed for quite a while. When I did find out it was UC, I was shocked. I was put on bed rest and was in a lot of pain. But luckily, I have never been hospitalized.

I have always been very athletic. At school, I played college basketball. When I first got the symptoms, I had been training for a half marathon. So, I was already very fit, and I think that helped me in my recovery.

Still, it took a lot of trial and error before I found out what worked for me. Initially, my parents and I were very concerned about medication side effects, so I tried to handle it with diet and lifestyle changes. I cut out gluten and other foods, and had a food allergy test. I also tried East Indian and Chinese natural cures. None of these were the answer.

Finally, I realized that I had to sort it out for myself. In retrospect, I wish I had been more trustful with my doctor. When I finally agreed to the medication he prescribed, I started to feel better. Since spicy foods can be irritating, I had to cut out spices. I’m East Indian, and everything we eat is spicy! So it was difficult in the beginning – everything tasted bland. Now I’m used to it. And when I’m in remission, there are days that I think “Okay, I’m feeling good now, and I can eat what I want.” But I do pay attention – if I’m feeling a little bloated, I tighten up my diet. Everyone is different. You need to know what works for your own body in controlling it.
I try to control stress as much as possible. Stress is a huge part of it! When I was first diagnosed, I had a lot going on with schoolwork, volunteering and basketball. So I found it hard to slow down.

Over the years, I’ve learned to take a few steps back. I realized, after all, it’s my health.

I also exercise regularly. I do cardio and weights, which help with my joints and increases strength. I tried yoga, but it wasn’t my cup of tea! Everyone has to learn what works for them in terms of working out.

I’m a flight attendant, so staying on a consistent routine is quite a challenge. We eat at random times, and sometimes have to wake up at 2 a.m. But I love my job, so I’m not ready to give it up! That said, when I have a flare, I have to call off work. I’m not obligated to tell my employer, but the insurance agency knows, and they are in contact with my gastroenterologist for updates.

Attitude is also very important. You can’t get down on yourself and be negative. I try to avoid negative people and situations.

My doctor is fantastic. He keeps me informed, and makes sure I know my options. I really want a family, so I’m very motivated to stay on my diet, control stress and keep taking my medications.

To people who are newly diagnosed, I’d like to say – don’t be afraid to reach out! In the beginning, I didn’t. I was too embarrassed, and I didn’t want anyone knowing.

But what I found out is that the more you reach out, the more information you will get and the more support you will have. My family was always there for me. The love was there and they did anything and everything they could. But it’s not the same support you will get from people who have been there and know exactly what you’re going through. And you can help others. It’s a different kind of support altogether.

* Based on a single patient experience. May not be representative of all patient populations.

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Réal,*

age 54

Quebec, QC
Diagnosed at age 32.

“Stress is a big factor in UC, and learning what your ‘stress triggers’ are can help you gain control. I don’t use meditation or a specific relaxation technique, but I make a big effort every day to relax and use positive self-talk to stay calm!”

MEET Réal
UC runs in my family: my father and two of my sisters have it.

When my symptoms first appeared, I suspected it was UC after talking to my dad. Even so, when I was first diagnosed, I found it very difficult to accept. In the beginning, I had a lot of relapses. Nerves and stress played a big role in this. When I was younger, I tended to be high-strung, which was certainly a factor in my relapses. My symptoms also got much worse during my separation.

My gastro followed me closely. I tried different types of medications among the ones available at the time to find one that was right for me. However, I was young, and felt that I didn’t want to take medication for the rest of my life. This was a struggle, because I always felt best when my medication was working well.

As my condition progressed, I needed to use stronger medication to control my worsening symptoms, which meant more side effects as well. Even when medication was controlling my symptoms, I sometimes ended up making things worse if I stopped paying attention to what I was eating. I found that it was really important to continue to follow my doctor’s advice, even when medication was working well.

My doctor explained that surgery might be beneficial, but left the decision up to me. After five or six years, my UC was so bad I couldn’t do things that I loved anymore. I stopped going to golf tournaments, and I couldn’t even go to a movie. That’s when I had had enough and decided to go ahead with the surgery.

Having surgery was a real turning point for me. I got back the normal life I used to have. Before my operation, my whole diet was a special diet, and I still couldn’t control my UC. Now, I can eat at any restaurant, and I can eat almost anything I want. The only thing I have to be careful about is spicy foods.

The best advice I could give to someone first diagnosed with UC is to work on self-improvement. Stress is a big factor in UC, and learning what your “stress triggers” are can help you gain control. I don’t use meditation or a specific relaxation technique, but I make a big effort every day to relax and use positive self-talk to stay calm.

I have made other changes in my life that have helped to reduce stress. I now work as a car inspector for a railway company, which doesn’t cause me undue stress.

I also make time to go to my cabin in the woods, which doesn’t even have a telephone or TV. When I am there, my only focus is peace and quiet, surrounded only by the lake and the forest.

I feel comfortable talking openly about my UC, even at work. I guess one of the reasons is that it has always been a part of my life, given that my father and sisters have it. Some of my coworkers also have UC, and we find it beneficial to share our experiences.

Today, I am in complete remission and have been for over 15 years! I can understand why some people might be shy or scared of talking about their UC, especially when they are first diagnosed. My experience has been that it’s really helpful to share your personal story with someone who has gone through the same thing. You can get advice from others – and just knowing that you are not alone helps, too!

* Based on a single patient experience. May not be representative of all patient populations.

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