Our lovely daughter Jessica has spent her early life with a chronic bowel condition, which led to her getting a stoma. Through this, she has been full of energy, and her chronic condition hasn’t held her back from a happy childhood.
First moves
Jessica was born on 11 September 2014. She was 3 weeks early and weighed a healthy 3 kg.
A newborn baby’s first poo is known as their meconium, and it’s made up of what was in their bowel during pregnancy. Baby’s usually pass their meconium in the first few days of birth, but Jessica only started to pass hers when she was 4 days old, and she only managed to pass a tiny bit. Seeing that Jessica was struggling to poo, we took her to our GP, who then sent us to the hospital.
In hospital, at 10 days, old Jessica had her first enema. She was then put on different medications to help with her bowels, but they didn’t agree with her little tummy. At 3 months old, Jessica had a biopsy to check for Hirschsprung’s disease, a genetic problem with nerve cells in the bowel that causes severe constipation and is treated with surgery. The test came back negative, and so they diagnosed her with chronic idiopathic constipation.
This refers to long-term difficulty passing stool that has no recognisable cause. Without a known cause, chronic idiopathic constipation cannot be cured, and so it needs to be managed indefinitely.
Jessica having her stoma refashioned (left) and recovering from surgery (right)
Early battles
Jessica battled with this condition for the first few years of her life. When she was 2 years old, she started getting fissures, a kind of painful sore towards the end of the bowel that affected her sphincter muscles. This was certainly not a nice thing for a 2-year-old to go through.
Eventually, Jessica had hospital treatment to remove the fissures. When we tried her bowel out at home, the treatment seemed to have worked—although Jessica hated having it done, the results were amazing. However, the treatment was only effective for a short time, and the fissures kept coming back.
Jessica with colostomy books purchased for Alderhey stoma department
A new friend
By the age of 3, Jessica was still in pain from the fissures. The doctors decided that a colostomy would hopefully give her bowel and sphincter a welcome rest. On 8 November 2018, Jessica went in for an operation to have her stoma formed. Going to theatre, she was the calmest she has ever been.
After the procedure, Jessica stayed in hospital for 6 days. During this time, she got to known her stoma, and she named it Apple. It was hard at first, as she didn’t like having her pouch changed. However, after 2 weeks, she was fine.
At 3 weeks after surgery, Jessica went back to nursery school. Each day, she took her Buttony Bear (a teddy bear with a stoma) in with her comfort. The stoma care nurse from Alderhey Children’s Hospital also went with her to train the school staff. The staff were all amazing and keen to be trained. They explained about Jessica’s stoma to her classmates, who were all accepting, which made us so happy.
Jessica wearing her awareness t-shirt and giving Buttony Bear some oxygen
In and out, again and again
Jessica was getting on well with her stoma for 2 months, until she developed rectum mucus. This was so painful that she needed to go back to hospital, where she was given medication and enemas to sort it out. The hospital offered to do this whenever the problem flared up again, which it tended to do every few weeks. This tended to happen at unfortunate times, such as the day before we were set to go on a family holiday to Disneyland. Luckily, the hospital was on hand and gave us medication straight away, the flare was fixed and we got to go to Disneyland after all.
In May 2019, Jessica had a major flare up that was so severe that she had to be taken to emergency theatre. There she was diagnosed with diversion colitis, a complication of having a stoma where the disused bit of the colon becomes inflamed. In August 2019, she had her stoma dilated. During the dilation, the surgeons found that her stoma had narrowed, known as stenosis, so much that it was causing bleeding and severe constipation.
Therefore, in November 2019, Jessica went back to hospital to have her stoma refashioned. This surgery was particularly hard for her, and it took her 2 months to recover, and she was off school for that time Even when her wound opened up, Jessica kept smiling.
Jessica rocking her stoma pouch
Onwards and upwards
Over the following 6 months things weren’t so bad. She still got mucus, but we were able to manage this. After that, there were a few more problems. Through the second half of 2020, Jessica was in and out of hospital to examine her stoma, calm inflammation of the bowel, treat another painful mucus flare and unblock some severe constipation.
Through all of this, Jessica has stayed smiling, and every day she carries on like a trooper. We wanted to help other parents and children going through a similar situation, and we felt that our amazing daughter would be a real inspiration. We set up social media accounts under @jessicasstomajourney to share her story. Jessica has since received a Liverpool Echo award for courage, and she has been helping to raise money to provide Buttony Bears for other children having bowel surgery at Alderhey Children’s Hospital.
Kimberly Lucock lives in Liverpool with her family, including Jessica, who has a stoma