Surviving School With a Bowel Condition – Real Life Stories

Andrea diagnosed with ulcerative colitis at 6-years-old.

这周我们都被这些可爱的孩子们的照片淹没了,他们穿着有点太大的校服,咧着嘴笑。是的,九月来了,对很多孩子来说是开学的时候了。在这些微笑的照片背后,对许多孩子来说,开始上学可能是一件有点伤脑筋的事情。它给日常生活带来了很多变化,也给人们带来了一整天都待在家里和家人在一起的安全感。

How do you cope with all these changes and a chronic illness such as a serious bowel condition all at once? Two of our Bladder and Bowel Community members tells us about how they manage(ed) through the school years and give us some good advice on how you can do the same.

Charlotte (and Doug)

夏洛特是一个励志的年轻女孩,由于行动迟缓,她最近做了结肠造口术。在这里,她在妈妈尼古拉的帮助下用自己的话告诉我们她的旅程!

Hello my name is Charlotte, I am 10-years-old, nearly 11 and I have a colostomy bag. I have only had it for four months now as I have a slow moving bowel and I couldn’t poo without loads of help.

My teachers know about my condition as I told them straight away and they are amazing with me! Sometimes they are too overprotective! I also decided the best thing for me to do was to tell all my friends in one go and my mum helped me make a photo video story and I did a big assembly!!! People asked me lots of questions at first and I preferred them asking me to my face. Everyone asks to see my bag, most times I just show them but sometimes I say‘I wouldn’t ask to see your bum hole so you’re not seeing mine’and my friends laugh.

My essential ostomy items for school are 1) stoma bags 2) wipes 3) a sense of humour, my hand eye coordination is awful and I make a mess if I try and clean my stoma bag myself so I have a one-to-one coordinator who drew the short straw and does it for me! She is the best person I have ever met, she sings stoma songs to me to put me at ease. So far, I haven’t had any issues with my bag… everyone knows when I pass wind as I can’t control it, I just say it wasn’t me! I’m not lying it wasn’t me it was Doug (my stoma’s name). I’m allowed to use the school toilets anytime, but to be honest my teachers are checking on me that much, I go when I don’t even need to go so they can check! They are so, so amazing!

My advice to others would be to embrace your stoma and tell people, it then becomes the ‘norm’ and you’re not carrying a big secret around with you! I can fart out loud without anyone judging me! I love my stoma, not only has it saved my life, it’s allowed me to live my life… so why should I hide it?”

Andrea

Andrea was first diagnosed with Ulcerative Colitis, a form of Inflammatory Bowel Disease when she was just six-years-old and spent her whole school life managing her bowel condition. Now as an adult, Andrea is currently battling bowel cancer and helps to spread the#Never2Young这是一项由英国肠癌协会积极推动的活动。Andrea also has an ileostomy.

Here Andrea tells us her story about how she managed her bowel condition at school.

“我只有6岁的时候被诊断出患有溃疡性结肠炎,我的胃疼,腹泻,有时便秘,急着上厕所,大便带血,恶心,呕吐和疲劳,我还发现某些食物对我影响很大,有时我无法进食。

我的情况会对我的日常生活产生很大影响,我会担心上厕所的问题,最后我不得不从学校和大学抽出很多时间,取消或改变去看朋友的计划。虽然我在学校过得很好,但我认为在这么小的年纪就被诊断出患有自闭症会让你变得坚强和坚持,你不想错过任何事情!我确实有很多时间不上学,或者因为身体不适、医院预约/住院、结肠镜检查等原因不得不提前离开。我的很多症状在我早上一起床就开始了,所以我要么不去上学,要么在一天的晚些时候去。

我的父母把我的情况告诉了学校老师,特别是因为我需要离开学校的时间,而且万一我在学校也不舒服。我不确定我所有的老师是否都知道,但大多数人都很支持我,因为他们没有质疑我是否需要回家或休假。学校的护士知道我的情况,并会在我需要的时候帮助我服药。在我十几岁的时候,我的饮食断断续续地不好,一开始,食堂的工作人员对此感到困惑,但最终他们学会了不再质疑我有趣的饮食,让我继续下去。有时候,我因为没吃多少或没吃完午餐而被责备,但我只是在“信号弹”期间吃不下东西,人们并不能真正理解这一点。我记得有一次学校老师说我长得像花栗鼠。我当时正在服用类固醇,当然,老师不了解类固醇的影响。那时候我妈妈确实很不高兴。

I decided not to tell my friends initially about my bowel condition at primary school as I didn’t think they would have understand plus I feared that some would laugh at my toilet situation. Some of my primary school friends knew a couple of years later, when life was a bit more social as I would end up cancelling plans or dance classes or have a visible ‘moon face’ caused by my medication. I only told close friends at secondary school, I didn’t really want everyone to know and I would have felt awkward telling my whole year. Those friends who knew were very supportive and would only mention my illness if I was unwell or spoke to them about it. I preferred it that way and I worked hard to try and not let the illness affect my life and let it stop me from doing things. I was a rough child and teenager and lived life to the fullest, even if I was in pain or suffering a ‘flare up’. I wanted to do all the things that my friends were doing!

I didn’t have any problems accessing toilets at school, I was allowed to go when I needed do but I would feel a little embarrassed and self conscious asking to go at secondary school. The worst was being in a cubicle and the fear of people hearing me or smelling me and I would sometimes wait until the cubicles were empty to leave the toilets, or spray body spray to mask the smell or continuously flush the toilet to mask the sounds.

If I could give advice to a young person suffering from IBD, it would be to live your life. Don’t let this illness take hold of you, yes give in and rest, be in hospital when you need to be but the rest of the time do what you’d like to do, go out with friends, join groups (I was in dance groups and theatre groups, which were full on but I coped most the time) and go to places.

Your true friends won’t mind if you cancel or say no to things, they’ll love you for who you are. Be honest with teachers/ school nurses/ support staff, they’ll admire you for doing so and will give you support when needed. Carry a ‘Just can’t wait card’ and ‘RADAR key’ to be on the safe side.

Hold your head high, you’re amazing even when you’re tummyisn’t behaving. You can live life and you can still achieve things! I coped and adapted to life with IBD, I got good grades in GCSEs, A Levels and went to university to do a degree in Dance (due to my IBD I got myself a swanky room with its own bathroom, due to my IBD I made lifelong friends despite my illness). You can do this! You and your body are stronger than you think!

To share your story and help us to end the stigma and bladder and bowel conditions, email[email protected]