Karen and Hannah

Before my daughter, Hannah, was diagnosed with IBD I didn’t know much about it. Like most people, I’d heard of Crohn’s, but we were told our daughter had ulcerative colitis and I didn’t really know what it was at the time. But I was just relived we had a diagnosis!

Hannah - who was 11 years old at the time - had started with symptoms exactly two months earlier, but I felt her doctors weren’t listening to me or taking her symptoms seriously. As a mother, you know when your child is seriously ill - especially if you’re a paediatric nurse (which I am). I couldn’t believe how much I had to push to be heard, to the point of going to A&E. By this time Hannah had lost a lot of weight, was very pale, lethargic and losing a lot of blood and kept asking “mummy do I have cancer?”!

We even ended up going private as we felt we weren’t getting the right care and answers.

Hannah has had three lots of colonoscopies and endoscopies under general anaesthetics in the last eight months. These were to determine where the disease was and its severity. We were told originally that it was mild, but with her still not in remission her last scope confirmed that it is severe.

Hannah lost weight, then she gained weight due to the steroids she was put on. This has been very difficult and distressing for a young girl going into high school. Morning medication has been a real struggle especially when we needed to leave for school. It became a big issue for Hannah to take the number of tablets she had to take. She would gag, procrastinate and cry and she had to mentally prepare herself to take them. It could take up to half an hour to an hour for her to actually take all of her medication. She’s a lot better now, but we still have stalling on busy mornings.

I would administer the enema at bedtime and Hannah had to mentally prepare herself to have it as she would get really nervous and keep going to the toilet. She would say she was ready, then as I was about to give it, she’d say “no mummy, wait”. She’d take a couple of deep breaths and say “ok I’m ready”. When I did give the enema, she would need to squeeze either my hand or her daddy’s hand as it stung so much. Then she’d have the urge to go to the toilet, which was difficult as she had to keep the foam in, otherwise, it wouldn’t work.

Hannah now manages the enemas on her own now which I feel is a pretty amazing thing for a 12-year-old to do! Due to Hannah’s ulcerative colitis still not being in remission she’s now been put on Humira injections - she had her loading dose just the other day. She had four injections - one in each arm and one in each thigh. She was so nervous she was shaking with fear. She didn’t stop the nurses giving the injections - she just sat there and had them.

I would say Hannah is a very strong young lady. She has had to deal with so much and at a very young and difficult age. Not many kids aged 11 or 12 have to cope with the symptoms, medication (up to 12 tablets a day), having to use a foam enema every evening to help stop symptoms, the tears and the torment ulcerative colitis has caused. My husband and I worry so much for Hannah and how it is affecting her physically and mentally. We’ve referred her to speak with someone who specifically works with children who are diagnosed with a medical condition. This, and setting up a support group, is our only way as parents that we feel we can help and support our child through this.