So, were you just diagnosed with Ulcerative Colitis (‘UC’)? Hey, 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 with UC. Regardless of where you’re at we’ve all been there, all of us with UC, and it’s OK to be scared, shocked, indifferent or whatever you’re feeling right now. I can imagine you might feel so 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.
When I was back in school the students thought I was different because I missed a lot of school . Things were falling apart, I got a lot of bullying with people saying ‘You’re different… don’t hang with her…. omg 😲’. It wasn’t nice. Most mornings I didn’t go in to school until a bit later. If I went to the toilet for a long time, the teachers would be taking 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 got depression a lot but never told anyone because I didn’t know what they would think. Most of my friends knew because I told them and at least they understood like most people I thought would.
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 out on the ocean and at different places usually taking photos if people ask for example if there was storm or if somebody was at sea and wanted their photo to be taken. I go partying with 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.
You may wonder what Ulcerative Colitis symptoms are. People having a flare up of Ulcerative Colitis may experience or all the following symptoms:
· Abdominal pain
· Tiredness/lack of energy
Doctors will do examinations of the large bowel from the rectum to the caecum to diagnose UC. This is what I had to do many times before, it isn’t scary. I didn’t care at the time, I wasn’t worried. I mean worrying yourself isn’t good. It is important that the bowel is empty for the tests so your doctor can get good views of the bowel wall. My doctor prescribed a special drink to take on the day before my examination to ensure this. I was given a sedation for the test which takes approximately twenty minutes. I was asked to rest in the recovery room for about an hour and could be given light refreshments before I was discharged home. Capsule endoscopy is a recently developed technology which may be helpful in certain cases. My doctor also took into consideration how I was coping with my symptoms. He prescribed drugs to reduce the inflammation in the colon and help to heal the inflamed intestine lining. These drugs were useful in rating mild to moderate flare – ups and are used to keep my colitis in remission.
What foods can you eat with UC?
· white bread without seeds
· white pasta, noodles, and macaroni
· white rice
· crackers and cereals made with refined white flour
· canned, cooked fruits
The foods which you should not eat are:
· brown rice
· wild rice
I have no shame or embarrassment in saying I have UC to people if they asked what was wrong with me. It’s not a pleasant thing to have throughout your 20s but one key thing about living with UC is accepting you have it and to not feel embarrassed about discussing it. After all, everyone goes to the toilet – it as natural as breathing – so what the sheepish attitude to 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 heavily associated with having the illness. I do have positive times and navigate times but hey that’s going to happen. They say life is short but you got to be strong for what you have.
I was diagnosed March 2013 when I was 16 years old. For the past five months I have been feeling good like nothing is wrong with me as I have been taking my medication every day. I never like taking the medicine and it’s really annoying for me. I take it morning and night. At one point, I was going to the bathroom 10+ times a day. At one point in time, I had gone in my pants and washed myself off in the toilet in secondary school. It was horrible and I lucky to have a spare pants with me, because being caught short isn’t nice feeling to have. It had all become so normal at that point. But you know what? Its ok even if you don’t experience all of this, or half of this or even any of this. If you got out of the bed today – congratulations and just remind yourself tomorrow is another day.
I take my medication, exercise and try to follow a good diet. This disease, as we all know, 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. I can’t tell you anything that is going to take away this disease because right now its 5 years later and we still dealing with what has actually caused it. You can realise that 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 after a few hangups. And having this disease will lead you to your life’s work: inspiring and educating others on how to get through difficult times. So, in closing, I want you to understand that most of this journey will be in understanding that you have this choice. Once you realise this, you will know you are not cursed but blessed to have been able to live a life full of hard won lessons.