Jake started experiencing oral symptoms of Crohn’s when he was only 3 years old, but they were repeatedly misdiagnosed. He was very fortunate to have his Mum, Kara by his side as his number one advocate, making sure he received the correct diagnosis, right support and the best treatment. We spoke to them about their journey to diagnosis and why raising awareness is important.
Q: Why do you feel it’s important to raise awareness of the oral symptoms of Crohn’s?
There does not seem to be a lot of information about the oral symptoms of Crohn's and they appear to go undiagnosed. Jake initially had sore, swollen lips which was thought to be impetigo. He also had gum inflammation and had to be referred to a number of specialists. It took some years before he was eventually diagnosed with orofacial granulomatosis (OFG). I was told that OFG can sometimes be present with Crohn's Disease. We feel if OFG had been diagnosed earlier, he would not have had to wait so long for a diagnosis of Crohn's Disease.
Kara
Jake's Mum
Q: What do you wish you knew at the beginning of Jake’s journey with Crohn’s?
Jake's oral symptoms were apparent when he was a toddler and at that stage, we had no idea that it was something more serious. Although he was eventually diagnosed with OFG, he was not showing the typical symptoms of Crohn's. This meant it took some time for him to be referred to the correct specialist.
He was eventually diagnosed with Crohn's disease in multiple areas when he was 8. We had no idea that Crohn's could affect so many different parts of the body. We wish there was more awareness of this, as it could have helped Jake get the right diagnosis and start treatment earlier.
Q: What advice would you give to others in a similar situation to you and Jake?
It's important to be persistent. If you think something does not seem right then trust your gut, as it could mean you get the right support sooner.
Q: How is Jake doing now post diagnosis?
At the moment, Jake seems to be improving. He is currently on daily medicine which suppresses his immune system. Due to the extent of his Crohn's, he also requires a biologic medicine which he injects weekly. He does have sore joints, skin issues and time off school for illness and medical appointments. Although it has been a long journey and continues to be, we are lucky that Jake has a great team of specialists at Birmingham Children’s Hospital.
We’re so proud of Jake for how well he’s coping with everything at present. We are both so grateful for the care he receives from his IBD team at Birmingham Children’s Hospital and are slowly adjusting to life with Crohn's.
Oral symptoms that can affect people with Crohn’s or Colitis include:
- Mouth ulcers
- Swelling or lumps in your lips, face, tongue, gums or the inside of your cheeks
- Gum disease
- Sores at the corner of your mouth
- White or yellow spots inside your mouth (a condition called pyostomatitis vegetans)
- Swelling of the gums and lips with ulcers in the lining of your mouth (a condition called orofacial granulomatosis)
- Yeast infections
- Tooth decay
- Dry mouth
- Bad breath
- Changes in taste
