“16 years ago, aged 6, I first experienced my symptoms. After a year of misdiagnosis I was finally told I had Ulcerative colitis, a disease with no cure.
“Frequent bloody loose stools, up to 15 times a day with crippling abdominal pain and extreme fatigue; to the point a shopping trip left me unable to walk. This was followed by copious amounts of toxic medication, 11 courses of high dose prednisolone from 7 – 15 years old, contributing to rapid weight gain and numerous unkind comments from onlookers at school,” 22 year old Karina Punia explains.
Ulcerative Colitis is very similar to Crohn’s Disease and is often treated in the same way but the symptoms are usually more acute with severe abdominal pain, persistent diarrhoea, usually with blood and mucus in the stools.
Since the early 1970’s there has been a dramatic increase in the incidence of Crohn’s Disease in children of all ages and as yet there is no explanation for this continuing increase.
When CICRA – the only UK registered charity formed solely to support the ever increasing number of children and young adults with Crohn’s Disease or Ulcerative Colitis (Inflammatory Bowel Disease – IBD) and their families – was formed in 1978 there were no paediatricians specialising in Crohn’s and Colitis in children. CICRA set up a Fellowship Scheme and many of the leading doctors treating children and young people throughout the UK today have had their specialist training through this scheme. Young doctors wishing to specialise in gastroenterology are still able to take advantage of this opportunity provided by CICRA.
Diagnosis of Ulcerative Colitis is not easy in children as some of the symptoms mimic other less serious disorders.
Once Karina was correctly diagnosed, doctors attempted to find the best treatment for her.
Karina said, “The trials of immunosuppressant’s, herbal remedies and anti-inflammatories stocked up, to a point I was on 32 tablets a day. Desperation for remission left me tolerating dairy and gluten free diets, weekly blood tests and frequent colonoscopies under general anaesthetic. I soon accepted this to be part of my everyday life.
“Steroids appeared to be the only drug that made the real difference stopping my symptoms to my dismay, which only meant that the torture from those who did not understand my invisible illness did not cease. With my symptoms further deteriorating, I was hospitalised twice in the space of a year, given 7 blood transfusions and my absences in school increased, but this only made me more determined to work through the struggle when I returned.
Finally feeling as though my symptoms were settling, I persevered with my GCSE’s to have venofer (iron) infusions once a week during my exams as my anaemia continued to leave me feeling weak. I refused to fall behind and let my illness take control over my future so I took revision cards with me to the hospital whenever I needed to attend. Even during these tough times, I didn’t allow myself to apply for extenuating circumstances or special support in school or during exams, I didn’t want my disease to give me special allowances. I was driven to work hard to do my best.”
Being diagnosed with a chronic illness is difficult at any age, and having good support available for children and their families is so important.
“Having a chronic illness is terrifying and unpredictable. I never knew when a flare up would come to haunt me.
“CICRA has been a huge support to me and my family ever since I was diagnosed aged 7. For the past 15 years, they have provided invaluable information in coming to terms with suffering a chronic illness from such a young age. The opportunity to meet other young people suffering at their family days has made me a more confident person and me and my family have never felt alone,“ says Karina.
Karina’s hard work at school has helped her achieve her goal of studying medicine.
“My doctors and nurses always did their best to ensure I received the care I needed and this inspired me to return the duty to others suffering. I fought my way through education since primary school to get the best grades I possibly could, and from this achieved my ultimate goal of getting into medical school. I have now completed my third year as a Cardiff medic and with 2 more years to go, I cannot wait to help others the way the NHS and the healthcare professionals within it helped me recover,” said Karina.
Karina’s hard work, determination and kindness is lovely to see. Her story just goes to show how much children who are struggling with inflammatory bowel disease can go on and achieve.
CICRA are running a survey during September to develop their plans for next year and beyond based on what matters most to children and young people with Crohn’s and colitis. If you are affected, or know someone who is, you can complete the survey here.