Louis was still a toddler when I noticed that something was wrong. He suffered with really bad constipation from birth. When he was 4, he started to lose a significant amount of weight and was unable to keep food down due to regular vomiting. We managed to get a referral to see a pediatrician at Swindon hospital. We made the decision to go privately and pay. We saw a consultant who was extremely unhelpful and made us feel like Louis was fine and we were making it all up. We were sent away with no tests being carried out and a huge bag of Movicol!
Then he ended up with terrible diarrhoea. We continued to push for answers seeing several different consultants. They suggested it could been an allergy to certain foods. However, even when these foods were removed, Louis' symptoms continued. It was incredibly frustrating as they all said he was fine but we knew otherwise. We were never taken seriously. It took Louis nearly dying before they would take us seriously.
After months of issues, I ended up taking Louis to A&E. He wasn't eating and couldn't walk. He was extremely exhausted. I got sent away saying there wasn't anything wrong with him. I went back a couple of days later as he was still very ill. I said I wasn't leaving until they took me seriously and helped him. He had only just started school and missed the first couple of months as he was in hospital.
I put my foot down and we finally started to get some answers. The doctors weren't sure what it was and seemed hesitant to do further investigations. A doctor on shift came and took a look in Louis' mouth, that's when they discovered his mouth was full of ulcers. He was then sent for further scans where they saw ulcers present in his stomach to.
After those scans, Louis was transferred to Bristol hospital, where he had an endoscopy and colonoscopy. This was then when we were told Louis in fact had Crohn's Disease. He was only 5 years old at the time.
I had heard of Crohn's before as a member of a band I liked had it. I remember feeling petrified at the time as I kept thinking he was only little and I worried about the possibility of him needing a stoma bag.
Louis' diagnosis has been a huge challenge for us as a family. It was a very stressful time anyway as my partner, Louis' dad had lost his job, so we had a lot to contend with. It was a huge adjustment and I felt that he missed out on a lot of things that other kids his age were able to do.
Stacey
Mum of Louis, Living with Crohn's Disease
Louis is now 10 years old, and he is still navigating his condition. He is responding to treatment well, however there has been some trial and error involved in us finding the right approach to treat his Crohn's. Louis has been on Azathioprine but that didn't work, he's also been on Hydrocortisone for quite along time. He's now taking Adalimumab and responding well. He's recently had a short course of Prednisolone as he had a bad flare up in the Summer, but that seems to have now subsided.
School has been really difficult for Louis. Teachers have been unsupportive, resulting in me having to move him into a different school.
Louis was attending our local village school from the age of 5, but we had a terrible time with very unhelpful teachers. It felt like his teacher didn't want to have to deal with a child with Louis' condition. She made it very difficult for him and stopped him going on school trips. I had to be his 1 - 1 on any trips otherwise he couldn't of gone. He was the only child out of the whole school that wasn't allowed on 1 particular school trip!
We have a community nurse that gives Louis his injection. She came with me to a couple of meetings with the Head Teacher for moral support.
The Head Teacher was very dismissive of both myself and the nurse, saying that Louis wasn't allowed to use the disabled toilet and had to use the same toilets as all the other children. They weren't looking after him properly and I couldn't trust them.
The school I've moved him to now are completely different. They have done everything they can to support him and make him feel comfortable and accepted.
Things are now looking up for Louis! He's a huge Liverpool Football club fan and he hopes to start getting into football soon, with the dream of one day meeting his hero Mo Salah. In the meantime he's a proud ambassador for his local football team - Forest Green Rovers. He also can't wait to go on all the upcoming school trips, as this was something he was unable to do at his previous school.
He also took part in MyWalkIt last year and raised an amazing £550! Louis took part because he wanted to raise awareness for other people living with Crohn's Disease. He also wanted to raise money to help people, especially young children like him. He felt very passionately about it. His dedication and hard work meant he was nominated by Crohn's & Colitis UK for Young Fundraiser of the year at the Alex Demain awards. He was over the moon when he found out he'd won! Louis was also awarded a Silver Blue Peter badge as he raised all £550 of his donations whilst he was in a flare!
If I was asked what advice I'd give to other people trying to advocate for their loved ones who are experiencing symptoms - just keep pushing. Keep pushing for answers and don't be afraid to be 'a pain'. You know them better than anyone else, and if you know something isn't right, don't let anyone tell you otherwise.
Are you supporting someone living with Crohn's or Colitis?
It can be really hard to know how best to support someone who’s living with Crohn’s or Colitis. The good news is that there are lots of things you can do to help.
