Ulcerative colitis: ‘I can imagine you might feel embarrassed right now, because I was too’

One key thing about living with it is accepting you have it and to not feel embarrassed about discussing it


So, were you just diagnosed with Ulcerative colitis? I know what you’re feeling. I’ve been where you are right now. You might be young, maybe in your teens. You might be older, with children and grandchildren. Maybe it’s your child who’s been diagnosed.

Regardless of where you are at we’ve all been there, all of us with UC, and it’s okay to be scared, shocked, indifferent or whatever you are feeling right now.

I can imagine you might feel embarrassed right now, because I was too.

In my mind, I was saying “how can a doctor ask a girl these questions about my toilet habits”, but I know the doctors need to know the answers to be able to help you.

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When I was back in school the students thought I was different because I missed a lot of school. Things were falling apart. I was bullied, with people saying, “you’re different”, “don’t hang with her”, “omg?”. It wasn’t nice.

If I went to the toilet for a long time, the teachers would take me outside the classroom to ask questions. I had to explain to them where I was for so long. These conversations would take five minutes each time which felt so stupid as teachers wouldn’t know what I was going through. I was depressed a lot, but never told anyone because I didn’t know what they would think.

UC is a part of me, and I’m doing the best I can. I can honestly tell you that living a meaningful life is possible. Right now, I have a part-time job in a factory packing fish and I have great support there. I take photography, often out on the ocean. I go partying with a few friends at weekends and I am currently in the National Learning Network, I love it there with many great teachers and students. I go to concerts. I have friends I can talk to and who appreciate me for who I am, regardless of me having UC.

I have no shame or embarrassment in saying I have UC to people if they ask what is wrong with me. It’s not a pleasant thing to have through your 20s, but one key thing about living with UC is accepting you have it and not feeling embarrassed about discussing it. After all, everyone goes to the toilet – it as natural as breathing – so why the sheepish attitude about talking about bowel disease?

But coping with UC is not simply about managing the disease, it can severely affect mental health too. For example, anxiety and depression are associated with having the illness. I have positive times and negative times, but hey, that’s going to happen.

I was diagnosed in March, 2013, when I was 16 years old, and, for the past five months, I have been feeling good – taking my medication every day. At one point, I was going to the bathroom 10+ times a day. Being caught short isn’t a nice feeling to have.

I take my medication, exercise and try to follow a good diet. This disease shows us that our body will not always do what we try to will it to do, and don’t worry, I know it’s not easy.

Having this disease is an opportunity and a blessing. With everything you will go through, you will gain experience to understand how much the mind matters through difficult times.

This will force you to become mentally stronger and more resilient. And having this disease will lead you to your life’s work: inspiring and educating others on how to get through difficult times.

Explainer

Inflammatory bowel disease (IBD) is a term used to describe a variety of conditions – including Ulcerative colitis (UC) and Crohn’s disease.

Symptoms of UC and Chron's include:
– Diarrhea
– Abdominal pain and cramping
– Fatigue
– Rectal pain
– Rectal bleeding
– Weight loss

Differences between UC and Crohn's include:

– UC affects the inner lining of the colon (large intestine). In Crohn’s disease, inflammation can appear anywhere in the digestive tract (from the mouth down).

– People with Crohn’s often have healthy areas in between inflamed spots. With UC, the affected area isn’t interrupted.

Read: Four women discuss day-to-day living with Ulcerative colitis or Crohn's disease