Lisa Clough. PHOTO/JADE CVETKOV
Whenever Lisa Clough is out and about, she makes sure to memorise exactly where the nearest toilet is.
In case she doesn’t make it to the bathroom in time, she rarely leaves home without a change of clothes.
Clough is one of the more than 20,000 Kiwis living with inflammatory bowel disease [IBD].
Seven years ago, the Masterton woman was diagnosed with Crohn’s Disease, an autoimmune condition which attacks the body’s digestive tract, particularly the small intestine.
One of the two most common inflammatory bowel conditions, Crohn’s came with an array of debilitating symptoms.
The disease affected “every aspect” of Clough’s life: depleting her energy, isolating her from friends and family, and resulting in a string of painful and costly surgeries.
Though New Zealand had one of the highest IBD rates per head of population worldwide, publicly-funded medications were limited, and, due to a national shortage of gastroenterologists, IBD sufferers faced long waits for diagnosis and treatment.
At the end of 2020, Lower Hutt-based gastroenterologist Dr Richard Stein presented a petition to the House of Representatives, urging the government to fund the drug Stelara for New Zealanders with severe Crohn’s and ulcerative colitis.
Stelara is a common treatment for IBD in Australia and Britain which, as Dr Stein noted in his petition, “has the potential to offer … a life without chronic pain, bloody diarrhoea, repeated hospitalisations and life-altering surgeries, and the hope for a fulfilling work and family life”.
Clough, who had previously advocated for the provision of IBD services in Wairarapa, said the petition was “near and dear to [her] heart”, as she was running out of funded options to treat her condition.
She co-ordinated a support group for people with Crohn’s and colitis – and was passionate about raising awareness of IBD, a condition often stigmatised and misunderstood.
She said while better access to IBD treatments would make a massive difference to her quality of life, compassion and empathy from the community was a good place to start.
“Because poo is involved, people think it’s gross. Which is strange to me – all of us poop every day.
“If I talk with some people about my illness, they’ll say ‘ew, don’t tell me that, that’s disgusting’.
“But, to me, it’s important to talk about it – if not, the stigma gets worse.
“I don’t want people’s pity or sympathy, but if people have more understanding, and can be more tolerant and kind towards people with conditions like mine, it would make a world of difference.”
Clough stressed she was “one of the lucky ones”.
She had a loving partner and close support network of family and friends, “an extremely supportive employer”, and health insurance – meaning she could access quality care from a private specialist.
However, her Crohn’s had proven notoriously difficult to treat, with medications either making her “terribly ill” or becoming ineffective over time.
She took the drug Humira, administered by injection, which helped keep her symptoms at bay – until recently, when her body rejected the medication.
When her symptoms reactivated, she could, on a bad day, spend two to five hours in the bathroom.
Clough had to stick to a strict diet, and receive regular iron infusions, as her body struggled to absorb sufficient nutrients.
In the past nine years, even before receiving an official diagnosis, she had 14 surgical procedures to treat painful perianal abscesses.
These abscesses eventually form fistulas – abnormal channels or passageways connecting one internal organ to another, or to the outside surface of the body.
To prevent the transfer of waste to other organs or the skin, fistulas need to be surgically opened, be drained of any infection, allowed to heal.
Before her surgeries, Clough was unable to walk, sit down or stand for long periods without excruciating pain.
“If I was to go through the public system, it would be considered an elective surgery – and my specialist told me it would probably never happen.
“I’d say I’ve made about $50,000 worth of insurance claims.”
One of the worst parts of Crohn’s, she said, was the fatigue – and the resulting social isolation.
“There are days where I’ll wake up and feel like my body is filled with lead or concrete. On those days, I can manage a shower, and that’s about it.
“I’ve lost friends in that past. I can’t always promise friends I can meet up with them, or keep to the plans we’ve made. Some people don’t understand that.”
At present, Clough’s options for treatment were either long-term steroid use or tacrolimus – a drug commonly taken by liver transplant patients which could have “terrible side effects”.
She said Stelara could be a shot at “something close to a normal life”, for both her and the other members of the Wairarapa IBD support group.
More support would also be helpful: at present, Wairarapa DHB did not provide specific IBD services, and patients could be left waiting six to nine months for treatment elsewhere.
Both Clough and Dr Stein have strongly advocated for Wairarapa DHB to employ a trained IBD nurse to help patients manage their symptoms.
Dr Stein had trained one of the DHB’s nurses to treat IBD patients, but Clough said the DHB had not permitted the nurse to put this training in practice.
She said she and Dr Stein had approached the DHB’s chief medical officer, Shawn Sturland, about this issue, but had yet to hear a response.
“Having better access to treatment in the public system would make a massive difference,” Clough said.
“I’ve been very lucky to have my specialist and such an amazing employer – but that’s not the reality for everyone.
“With IBD, we’ll never have a normal life – but we at least deserve a better quality of life.”
- The Times-Age approached Wairarapa DHB for comment, but did not receive a response before publication.