This week we’ve all been inundated with those photos of cute smiling kids in their slightly too big school uniforms and large grins. Yes that’s right September is here and it’s back to school time for many children. Behind those smiling photos, starting school can be a little nerve wracking for many children. It brings with it many changes to routine and the security of being at home with the family all day.
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)
Charlotte is an inspirational young girl who has recently had a colostomy due to slow motility. Here she tells us her journey in her own words with the help of her mum Nicola!
“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 message, a campaign that is actively promoted by Bowel Cancer UK. Andrea also has an ileostomy.
Here Andrea tells us her story about how she managed her bowel condition at school.
“I was only six-years-old when I was diagnosed with Ulcerative Colitis, I suffered from pains in my stomach, diarrhoea, sometimes constipation, urgency to go to the toilet, blood in my stools, nausea, vomiting and tiredness, I also found that certain foods would affect me a lot and at times I would be unable to eat.
My condition would affect me a lot on a day-to-day basis and I would worry about toilet situations, I ended up taking a lot of time off school and university and I would end up cancelling or changing plans to see friends. I managed pretty well at school though, I think being diagnosed at such a young age makes you strong and persistent, you don’t want to miss out on things! I did have a lot of time off school or would have to leave early because of being unwell, hospital appointments/ stays, colonoscopies etc. A lot of my symptoms started as soon as I woke up in the morning so I would either not go to school and end up going later in the day.
My parents told my school teachers about my condition, especially due to the amount of time I needed off school and in case I fell unwell at school too. I’m not sure if all my teachers knew but most were supportive in that they didn’t question if I needed to go home or have time off. The School Nurse knew of my condition and would help me to take my medication when I needed it. During my teenage years, I was on a no good diet on and off and at first, the canteen staff were confused by it but eventually they learned not to question my funny diet and let me get on with it. On some occasions, I got told off for not eating much or not finishing my lunches but I was only unable to eat during a ‘flare’ and people didn’t really understand that. I do remember a time when a teacher at school told me that I looked like a chipmunk. I was on steroids at the time and of course, the teacher didn’t understand the effects that steroids have. It did upset my mum at the time.
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 tummy isn’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 simon@bladderandbowel.org
