2006 - My symptoms started just after my 13th birthday. At first I was really embarrassed so tried to keep it a secret but then then my mum noticed and took me to my GP, who did a blood test (my first one that I can remember! I freaked out) which showed high inflammatory markers. By this point the D was very urgent, to the point where I was having 'accidents' which I was so embarrassed about that I went to great lengths to hide from my mum. I was still attending school up until I had an accident in the library (luckily no one noticed) and ended up walking out of school and walking home (an hours walk) by myself, then my mum pulled me out of school. I was transfered to a childrens hospital and had a colonoscopy. I don't remember much of this luckily, but I do remember the embarrassment of wearing an open backed gown! And I thought it was so embarrassing to have to take my underwear off and have to wander up the ward wearing it lol. I was under a general anesthetic and when I came round they said something about crohn's disease, assuming that I had been told I had it, well crohns was something that had been thrown around, but now it was confirmed! I was immediately put on:
2007 - Asacol - which made my joints seize up to the point where I was in constant pain and could hardly walk so came off of them.
then we tried...
Elemental diet - which I hated because I love food and the 'shakes' tasted so horrible! I can remember freezing them to try and make them taste better but I couldn't tolerate them which lead to....
My first hospital stay. I had a Naso-Gastic tube put in in an effort to establish elemental feeding, the actual insertion was fine but I found it uncomfortable/painful to wear 24/7 and hated the cold feeling of the liquid food going down the tube, also I found that I still ended up tasting the liquid anyway. I couldn't tolerate a lot of the liquid at a time, it made me feel sick, so I was hungry! A few days later I left hospital, with the plan being to stay on it for at least 6 weeks, but I reached my breaking point way before then, and ended up pulling the tube out myself at home.
So, clearly the elemental diet wasn't for me. I got transfered to another hospital which put me on budesonide, a steroid. It didn't really do anything for me. I tried to tell the GI this but he wouldn't listen, although he finally booked me in for another colonoscopy and an endoscopy. When I came round the drs where all round me telling me that I was very brave, and that they where surprised I was still upright? As it was one of the worst cases of inflammation they'd seen! Moral of that story is to trust yourself, if you know a drug is not working then push for something else. I was immediately admitted to hospital, however I was only expecting to be a day patient so didn't have anything with me, and also home was around 3 hours away by public transport! I was taken up to the 'assessment ward' in pediatrics where they kept me to try and establish elemental feeding, again with no success. We ended up discharging me ourselves so we could get treatment closer to home at the original hospital.
I was admitted for IV steriods for about a week, I liked that hospital though as it had a special 'teen unit' with a living area, personal tv's by the beds and people my age to talk to! We decorated cookies for children in need and raided the fridge for snacks. My mum would stay with me in the day and then my dad would visit me in the evening and bring me goodies like magazines, mcdonalds and sweets! I remember a nurse coming over and being like 'sweet food is bad for IBS' I was like uhhh... I don't have IBS! And I'm on steroids so what do you want from me lol!
2008 - Around this time I went on a gluten free diet, and although it was hard at first (as loads of things contain gluten) I found it made a massive improvement and I went in remission for the first time since diagnosis and was able to go back to school and sit my year 9 SAT exams.
A while later later I went into another flare and was distraught, having just tasted the freedom of remission. I was transfered to another hospital and if I remember correctly started prednisone? At this point I was trying to stay in school and we had our 'work experience' week and I was working at a riding school so I spent my first day poo-picking fields, mucking out stables and scrubbing buckets. That night, I suddenly had the worst pain in my legs, it felt like someone had dropped a ton of bricks on them and I couldn't physically move them. I was crying (which was out of the ordinary for me) and my mum rang the hospital who said to bring me in straight away however after taking some antihystimines I felt better and went to sleep so we went in the morning instead. Once there I was diagnosed with an infection, which required 4 antibiotic drips a day and IV steriods for my flare up, I hadn't realised it but after this my head got a lot clearer and I started feeling better from the infection. The steriods had a huge affect on me mentally, as well as the weight gain. I remember crying hysterically and begging my GI to take me off them as they weren't even working and I felt awful, I couldn't cope mentally with the stress of hospitals, tests, crohns as well as prednisone. So he agreed I could taper off them, however as I was on a high dose it took a while but I started to feel more and more myself everyday.
We looked at a drug called infliximab, I was very wary because of the potential side effects however it was nearing the end of the summer holidays and I wanted to go back to school so I agreed to try it. The day we started it I was so poorly that I couldnt eat or drink anything despite being dehydrated for risk of having an 'accident' in the (20 mins) car journey. I got there and I felt awful - I hadn't been able to eat or drink properly in months, going to the toilet a LOT so this was kind of my last option before surgery. While I was having the infusion I felt a strange sensation in my stomach and when the lunch came round I actually felt ok enough to eat something!! Then I felt fine, didn't need to go to the toilet constantly and actually ate a curry for dinner that night and walked my dog (something I had been unable to do for more than 5 mins before due to pain/fatigue). The next day I felt 100% better.
September 2008 - 2010 - I went back to school and, although I had a lot of work to catch up on, managed to get B's in most of my GCSE's. I then found my now -fiance and we started dating just after I broke up from school. He knew I was on infliximab from near the beginning however it wasn't until I had to go to A&E with severe tonsillitis about 3 months in that he found out I had crohns disease. I went to college but ended up dropping out because I got tonsillitis like 3 times in the first 6 weeks of school so decided it would be best.
Then my consultant tried to take me off infliximab and I flared up within 8 weeks however it was another 4 months before I was able to get back on it, so I flared up badly in that time to the point of going to A&E in desperation a few days before I was booked in to start infliximab again.
2011
In September I went back to college and finished my courses in 2013, with B in Law C in Psychology and C in English language and thank goodness, got onto my first choice of course (Law) at my first choice Uni
Going to Uni and living there with crohns was a little scary, but my halls had an ensuite bathroom and it turns out one of my friends who lived on my corridor had an auto-immune illness too. The only bad thing really was that I kept picking up whatever was going round my halls of residence (tonsillitis, chest infections ect) due to my low immune system from infliximab.
I'm still on infliximab as of now 06/14 so nearly 5 years now! however I'm researching other options as I'm worried about the potential side effects.
Phew! That's a lot more than I remember happening to me! And I can still remember trips to A&E, and IV steriods, and the Specific Carbohydrate Diet, the LOwFatFibreLimitedEXclusion diet that I haven't put in as can't remember exactly where they came!
Thanks for reading!
2007 - Asacol - which made my joints seize up to the point where I was in constant pain and could hardly walk so came off of them.
then we tried...
Elemental diet - which I hated because I love food and the 'shakes' tasted so horrible! I can remember freezing them to try and make them taste better but I couldn't tolerate them which lead to....
My first hospital stay. I had a Naso-Gastic tube put in in an effort to establish elemental feeding, the actual insertion was fine but I found it uncomfortable/painful to wear 24/7 and hated the cold feeling of the liquid food going down the tube, also I found that I still ended up tasting the liquid anyway. I couldn't tolerate a lot of the liquid at a time, it made me feel sick, so I was hungry! A few days later I left hospital, with the plan being to stay on it for at least 6 weeks, but I reached my breaking point way before then, and ended up pulling the tube out myself at home.
So, clearly the elemental diet wasn't for me. I got transfered to another hospital which put me on budesonide, a steroid. It didn't really do anything for me. I tried to tell the GI this but he wouldn't listen, although he finally booked me in for another colonoscopy and an endoscopy. When I came round the drs where all round me telling me that I was very brave, and that they where surprised I was still upright? As it was one of the worst cases of inflammation they'd seen! Moral of that story is to trust yourself, if you know a drug is not working then push for something else. I was immediately admitted to hospital, however I was only expecting to be a day patient so didn't have anything with me, and also home was around 3 hours away by public transport! I was taken up to the 'assessment ward' in pediatrics where they kept me to try and establish elemental feeding, again with no success. We ended up discharging me ourselves so we could get treatment closer to home at the original hospital.
I was admitted for IV steriods for about a week, I liked that hospital though as it had a special 'teen unit' with a living area, personal tv's by the beds and people my age to talk to! We decorated cookies for children in need and raided the fridge for snacks. My mum would stay with me in the day and then my dad would visit me in the evening and bring me goodies like magazines, mcdonalds and sweets! I remember a nurse coming over and being like 'sweet food is bad for IBS' I was like uhhh... I don't have IBS! And I'm on steroids so what do you want from me lol!
2008 - Around this time I went on a gluten free diet, and although it was hard at first (as loads of things contain gluten) I found it made a massive improvement and I went in remission for the first time since diagnosis and was able to go back to school and sit my year 9 SAT exams.
A while later later I went into another flare and was distraught, having just tasted the freedom of remission. I was transfered to another hospital and if I remember correctly started prednisone? At this point I was trying to stay in school and we had our 'work experience' week and I was working at a riding school so I spent my first day poo-picking fields, mucking out stables and scrubbing buckets. That night, I suddenly had the worst pain in my legs, it felt like someone had dropped a ton of bricks on them and I couldn't physically move them. I was crying (which was out of the ordinary for me) and my mum rang the hospital who said to bring me in straight away however after taking some antihystimines I felt better and went to sleep so we went in the morning instead. Once there I was diagnosed with an infection, which required 4 antibiotic drips a day and IV steriods for my flare up, I hadn't realised it but after this my head got a lot clearer and I started feeling better from the infection. The steriods had a huge affect on me mentally, as well as the weight gain. I remember crying hysterically and begging my GI to take me off them as they weren't even working and I felt awful, I couldn't cope mentally with the stress of hospitals, tests, crohns as well as prednisone. So he agreed I could taper off them, however as I was on a high dose it took a while but I started to feel more and more myself everyday.
We looked at a drug called infliximab, I was very wary because of the potential side effects however it was nearing the end of the summer holidays and I wanted to go back to school so I agreed to try it. The day we started it I was so poorly that I couldnt eat or drink anything despite being dehydrated for risk of having an 'accident' in the (20 mins) car journey. I got there and I felt awful - I hadn't been able to eat or drink properly in months, going to the toilet a LOT so this was kind of my last option before surgery. While I was having the infusion I felt a strange sensation in my stomach and when the lunch came round I actually felt ok enough to eat something!! Then I felt fine, didn't need to go to the toilet constantly and actually ate a curry for dinner that night and walked my dog (something I had been unable to do for more than 5 mins before due to pain/fatigue). The next day I felt 100% better.
September 2008 - 2010 - I went back to school and, although I had a lot of work to catch up on, managed to get B's in most of my GCSE's. I then found my now -fiance and we started dating just after I broke up from school. He knew I was on infliximab from near the beginning however it wasn't until I had to go to A&E with severe tonsillitis about 3 months in that he found out I had crohns disease. I went to college but ended up dropping out because I got tonsillitis like 3 times in the first 6 weeks of school so decided it would be best.
Then my consultant tried to take me off infliximab and I flared up within 8 weeks however it was another 4 months before I was able to get back on it, so I flared up badly in that time to the point of going to A&E in desperation a few days before I was booked in to start infliximab again.
2011
In September I went back to college and finished my courses in 2013, with B in Law C in Psychology and C in English language and thank goodness, got onto my first choice of course (Law) at my first choice Uni
Going to Uni and living there with crohns was a little scary, but my halls had an ensuite bathroom and it turns out one of my friends who lived on my corridor had an auto-immune illness too. The only bad thing really was that I kept picking up whatever was going round my halls of residence (tonsillitis, chest infections ect) due to my low immune system from infliximab.I'm still on infliximab as of now 06/14 so nearly 5 years now! however I'm researching other options as I'm worried about the potential side effects.
Phew! That's a lot more than I remember happening to me! And I can still remember trips to A&E, and IV steriods, and the Specific Carbohydrate Diet, the LOwFatFibreLimitedEXclusion diet that I haven't put in as can't remember exactly where they came!
Thanks for reading!
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