‘It takes two’ - a partner’s perspective on living with IBD

17 January 2018

For so many, like Sam, with Inflammatory Bowel Disease it takes two (or more!) to get through the struggles of living with Crohn’s or Colitis.

This is Timm’s perspective of caring for his wife... 

“Sam’s illness has made us pull together more than most couples,” says Timm, 45. When Sam received her diagnosis of Ulcerative Colitis (UC) in 2004, the year the pair married after six years together, he says they had no idea how much it would change the course of their lives together.


I didn’t know anything about Ulcerative Colitis at that point, I had never heard of it and had no idea of the severity of it.

Timm

While Sam began to get her head around the condition and her medication, Timm was working as a sound engineer for rock band The Darkness. His job took him away for months at a time on tour and he soon decided to find a job closer to home, to help out Sam – especially as the pair already had two young children together, Charlie and Ellie (and have gone on to have a third, Thomas).

He was then employed as tour manager-come-sound engineer, driver and technician by the then unknown local Sheffield band the Arctic Monkeys. “It was just me and the band basically.”

Although Timm and Sam knew the band were talented, even they couldn’t have predicted their meteoric rise. So instead of stopping at home as planned, Timm was once more away touring the world with the band for nine months of the year.

After a couple of years Timm started making plans to be based permanently at home.  As well as changing careers in 2009 to become a professional corporate photographer, Timm started an arts collective called Responsible Fishing UK. Nowadays he also runs an annual music festival in Sheffield called Tramlines and juggles his work with caring for Sam when she needs him, including accompanying her to appointments at Sheffield Teaching Hospital.

Following a subtotal colectomy in 2013, Sam had surgery to form a j-pouch and remove the stoma all in one operation. “It was ridiculously tough surgery,” Sam says. “I was in hospital for a few weeks and you can’t eat for 10 days.”

Despite going through the operation, she was left back at square one as she had chronic pouchitis, which she says was as bad as the UC itself. After “18 months on the toilet” says Sam, in January 2016 she had her rectum and anus removed and the stoma was made permanent.

While Sam was going through the immensely challenging surgery and recovery – along the way she also had two hernia operations, Timm was picking up the pieces at their home in Kiveton on the outskirts of Sheffield.

He says: “I have definitely had to take on more of the kid duties. Sam and I have always tried to keep things positive for the kids so that they don’t worry too much, and when Sam’s been in hospital it has been down to me to sort of explain things to the kids and to make sure they see her as much as they want to. We have to prepare them for each step so that they are aware of what’s going on."


Personally, what I find the hardest is that she’s having to deal with it all.  I find it hard that I can’t really do anything to help. I can’t cure it and when she’s ill I can’t make her feel better. I think that’s what I find the hardest – you feel pretty useless.

Timm, 49

Although he certainly fulfils the role, Timm won’t call himself Sam’s carer. “I do care for Sam. When she needs help I am there but I wouldn’t describe myself as a carer,” he says. “It’s not like it’s a nasty word or I feel embarrassed by it but it’s not how I see it.

Sam clarifies the extent of Timm’s ‘husband role’, as he calls it: “I was literally laid up in bed for weeks after my surgeries and I couldn’t do anything, so it’s been everything from putting me in the bath and showering me to doing the cooking, the cleaning, parenting for the both of us … All the while he was supporting the family because we couldn’t claim any support.”

Sam says that there were times when it was hard not to feel like a burden or to worry about what would happen if Timm wasn’t around. “It’s getting better now,” she says, “but for a long time now his entire life has revolved around my illness.”

Timm says he and the children, now aged 17, 14 and 12, are incredibly proud of Sam, who now works full-time from home as a Digital Community Manager for Scope and is also a bit of a celebrity. She frequently appears on BBC Radio Sheffield, has been a guest on This Morning and BBC Breakfast, and has written magazine and newspaper articles.


To read our future editions of Connect you can join as a member today for only £1.25 a month just visit our membership page to find out more. 


If you have been affected by any of the issues feature in this article, we are here to support you. Find out about the support for you available.