Andrew Stevens

LET'S KISS GOODBYE TO MS

October 2023 marks the 1-year anniversary of a life-altering event for my wife, Amanda.

Stepping back to 2016, Amanda was diagnosed with Multiple Sclerosis (MS) which was a complete shock to both of us at the time. A flurry of specialist visits led to a conservative treatment plan that had kept the worst of the MS at bay for the subsequent 6 years, but there was still a gradual decline in her daily quality of life, whether it was the constant fatigue, decreased co-ordination, and mobility.

Early in 2022, Amanda had been struggling with digestive issues, which for the most part was ignored by her doctors and specialists, who either believed it was related to one of her other conditions or her diet. Amanda was in daily increasing levels of pain and was struggling to eat much beyond crackers and water. After finally getting in to see a gastroenterologist, a diagnosis of ulcerative colitis (UC) or Crohn’s was suspected. By this point her pain levels were so bad that she was taken to emergency and admitted to the hospital on the 27th of October. The treating physicians put her on high-dose steroids to attempt to reduce the inflammation associated with the UC/Crohn’s, but her condition rapidly deteriorated over the following days. Daily X-rays of her bowel showed her large intestine increasing in size and on the 29th of October, showed that it had perforated in four places – she required immediate emergency surgery. I had managed to visit her that evening prior to this as I felt something was amiss. The phone call at 07.30pm from one of the surgeons telling me she was being taken into theatre, explaining the risks of what they were about to do and that I was required to give permission for them to proceed as Amanda was unable to comprehend the situation was gut-wrenching. I briefly spoke with Amanda, telling her that it was going to be ok and that I loved her. I was numb, unsure of what to do next other than wait. At 0230am, I phoned the hospital for an update, thinking that she would be out and back in the ward, but she was still in theater.

‘What is happening’ was all I could think.

I called again at 04.30am and was told she was finally in recovery. When I got to the hospital at 07.00am, she had been moved back to the ward, I will never forget what I walked in to. During the 7+hour surgery she had had a colectomy – her entire large bowel removed and was left with a permanent ileostomy (stoma). The next 3 weeks were exceptionally tough for her, with multiple complications: one that required the crash team and a 4-day stint in the ICU with blood transfusions, constant pain, multiple infections that required additional surgery, bedsores, incorrect medications, and a generally horrific hospital experience.

Fortunately, she has an amazing group of friends: Brendan, Cherry, Sam, Michelle, Monique, and Carla, without whose close support, comfort, and advocacy, I doubt I would be telling this story.

Nearly 12 months on Amanda is back on her feet, running her small business, getting out and about helping her friends where she can. Whilst she still has bad days, but she is focusing on putting positive energy out into the world. Her recovery and resilience to bounce-back from a situation that easily could have gone the other way, has been impressive to witness and be a part of.

To mark the 1st anniversary of this life-altering event, I am raising money for Kiss Goodbye to MS, with the aim of increasing awareness of the association of UC/Crohn’s with an MS diagnosis so that others don’t have to have the same experience. Any money you can spare will help this MS Australia with their research, advocacy, and outreach programs. I have set myself a personal trial by doing the Maximum Vertical Challenge, where for the month of October, I will be hiking/running to get the most cumulative gain possible. Barring injury or illness I have set myself a goal of at least 15,000 m of climbing, likely taking more than 50 hours and covering over 300 km.

I may be up for mini challenges for an additional donation…

Thank you!