Being diagnosed with IBD as a child

When I was younger I had never heard of crohn’s disease or IBD (inflammatory bowel disease). It was more common in adults. I was diagnosed at 11 years old and as I grew up I wasn’t aware of the seriousness of my illness and neither did I know anyone else with the same thing.

Fast forward 13 years and I’ve now connected with a whole community of IBD’ers online. I knew I wouldn’t have been the only person who had such an illness from a young age so I decided I wanted to write about how it actually affected my life. I know even as an adult a lifelong illness is life changing but I feel like being diagnosed at a young age has a HUGE impact on everything, from friendships to education and from puberty to relationships.

I also asked a couple of people to provide a short snippet of their experience of being diagnosed as a child and if it had any significant impact on any particular aspects of their life. Keep reading to see what they had to say.

There is a lot of my childhood that seems like a blur but then there is a whole lot that I remember like it was yesterday. For example the pain. Even though I was drugged up to my eyeballs with tramadol and morphine, crohn’s pain is really something you don’t tend to forget. Anyway back to the subject….

I would say that crohn’s changed literally everything for me. Instantly it was harder for me to make friends, because not only did I start secondary school a few months after everyone else, I was constantly off sick. I never completed a full year without being ill so maintaining friendships was super difficult. I think some people didn’t actually believe I had an illness either which is quite surprising. I was pretty quiet with my diagnosis in school, I didn’t really tell anyone and only the people in my form had an idea. I refused point-blank to attend school whenever I had an NG tube because in all honesty there were some horrible bullies and I knew going to school with a tube up my nose and stuck to my cheek would make it worse. Therefore I often got home tutored for long periods of time.

So not only did it impact my education and friends, I also never grew. Yes, you read that right. Steroids are known to stunt your growth (including puberty) so I stopped growing vertically and didn’t get my periods until very late. When I did get my periods they were extremely irregular up until I had my panproctocoletcomy, they said this could’ve been because I was really slim as well as the crohn’s. As you can imagine this means I was also very flat-chested.

Did it impact relationships as well? Of course. How do you date with a chronic illness? I know all of that ‘the right one will understand and be there’ etc but honestly it can be super scary. Imagine being rejected just because of something that is out of your control. There have been times when people have lost interest in me because of my illness or because I now have a bag. But there has also been moments when people have done their best to be there and care for me. To be honest I think it was much easier post stoma surgery (I got my stoma at 19).

Nikki’s experience

I was diagnosed with ulcerative colitis at the age of 8. It was a difficult thing for me to understand because I was so young. I didn’t really know that I had to pay attention to every bowel movement, everything I ate, remember to take my medicine, etc. I just wanted to be a “normal” kid! I ended up being in the hospital for most of the fourth grade, on and off. That was hard to explain to my friends because I didn’t really know how to do that without grossing them out (we were kids, after all, and poop was either funny or gross or both). I left sleepovers early, didn’t go to parties if I felt unwell, and was constantly embarrassed at restaurants when I needed to use the bathroom multiple times. There was a distinct lack of compassion throughout grade school and high school because of the stigma around IBD. It was rough, and I kept it hidden as best as I could. I rarely told anybody about it aside from my doctors. It was a very lonely disease to deal with. Now that I am older, I am much more open about it and have learned to not care what others think, but when I was younger, all I cared about was people liking me. I wish I could go back and tell younger me that she wasn’t alone and that those who mattered would understand, but since I can’t, I choose to think about who I have in my life now, and how understanding the incredible humans in my life are as an adult.

@nikkimarieloveee on Instagram

Amy’s experience

Being diagnosed with IBD at a young age is a topic I could write in so much detail about. Being the third youngest in the country when I was diagnosed to have Crohn’s (at aged 7), a lot of it is (thankfully) a blur! I however do get times where I get flashbacks to experiences and I also remember some things super clearly. I missed out on a lot of school time around this age from being in hospital and having endless tests. When I was at school, a lot of the time it was a tough experience, often ruled by my IBD and revolved around toilet trips, being scared to pass wind to a point where I was in agony, trips to the school nurse to get my medication and meal replacement drinks (elemental diet/supplement drinks) & trying not to pass out in class from being so weak. As a teenager, I grew slower and went through puberty a lot slower than most around me. I felt like the odd one out in so many ways. Exams were also tough & I had alternative arrangements to sit at the front of a huge hall, which didn’t really help knowing if I pooped myself 200-300 people would see it. Having IBD at such a young age also meant I missed out on school trips and getaways, parties as a teenager & trying to get away with mischief! I often wonder what it would have been like & almost grieve for what my life could have been but wasn’t. However, I wouldn’t be who I am today or love the things I do. I wouldn’t know the people I know or have had my life shaped in such a painful & tough way, but one that has given me so much resilience now I’m nearly 30. Sure I have bad days, but I can battle them more because of what I’ve been through. I have a stoma bag, which saved my life. It doesn’t own me or control my life. It gave me my life.

@ibdwarriorprincess on Instagram

Anon

I was diagnosed with Ulcerative Colitis in December 2008 at the age of 12 years old. This meant that it was only a few months in to High school and year 7. Starting a new school is always daunting but doing that whilst missing a few days a week since September just made it harder. I was struggling to make new friends as I would be in a day and off the next. Once I was diagnosed, due to how ill I was, I was asked to do school in hospital and did not attend the mainstream school for a good few months. By the time I was allowed back, as it goes in a new school at that age, everyone had made new friends and have their own friend circles. I really struggled to fit in because I was ‘different’ and they thought I had just joined. Then came the dreaded nightmare of having to rush to the toilets. You weren’t allowed to go to the toilet during lessons and if you go in between lessons then you’re late for the next and have to explain yourself to the teacher.Let’s not forget the joint pains and having to walk across the massive school. Our school was going through a building process so many corridors were closed off which meant having to walk further than usual. In to my teen years, I joined a youth club in the hope that I will be able to fit in but, I just could not. Some weeks, I could not attend and that meant losing out on many perks. I drop out of the club and thought I would stick with my few friends who were neighbours. But even that dwindled out when I kept saying no due to fatigue and constant pains. I guess, they got fed up of me cancelling on them all the time and just stopped calling me. And, since then I hardly go out and if I do then it will always be in the car with a close friend. This condition has affected me in ways which I did not realise back then but now, looking back I see all the hurdles and bumps, I had to get over just to be alive today.

@ibd.lifeexperience on Instagram

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