Seven Marathons, Seven Days!

Laura Firth runs the marathon of chronic illness while living life to the fullest.

Sometimes I sit and reflect on my life and ask myself, do I remember a time before I felt no pain, had to take daily medication and endure endless hospital appointments, which continually resulted in surgeries and always searching for the nearest toilet? No, I do not. So, here is my story: how it all began and how I manage to get through each day.

I have lost count of all my surgeries and continually saying to myself, “This must be the last one!” I am pretty sure that every time you get put under anaesthetic it kills brain cells. This is not a fact, but would explain a lot.

First diagnosis

I first got symptoms when I was serving in Iraq. I was tired all the time, losing blood and always on the toilet. I was in denial of being ill, so much so that after months passed and I was out exercising, all I remember was waking up in hospital. This was the start of my journey. After what seemed like endless testing, I was finally diagnosed with UC. From there, I was prescribed steroids and sent on my way. This treatment was unsuccessful, so the specialist prescribed me more and more drugs, then injections, and still nothing. The continual change in medication went on for a few years.

It started to affect my career, as no one knew what to do with me. In 2006, I met my future husband, who soon became my rock. He was by my side through all the operations and appointments, stopping the car every 10 minutes to find a toilet! He really is my everything, but do not let him know that!

Things started to get even worse when I was pregnant with my daughter in 2007. I was constantly bleeding and going to the toilet 30+ times a day; I had to make a bed up in the toilet. The fight was on, but needless to say, it was only the beginning.

Battling adversity

Just before my daughter’s first birthday, I was rushed to hospital and what was more worrying was there were no more drugs to try. My large intestine was incredibly ulcerated and had to be removed! I remember the nurse talking about a bag. My thought was “No way! Isn’t a bag for old people?” I was only 26 and not ready for this. My hubby was serving in Afghanistan at the time, and I could not go for surgery without talking to him. So within 24 hours he was by my side telling me it would be ok. The surgery was very long, and I just remember all the drains and tubes and then the bag! With so much pain, I was connected to a morphine drip, but found out I was allergic to this. Throughout this entire process, I knew I had to stay strong and fight for my family. There were some incredibly low, dark days, but my hubby always made sure I was laughing. The best kind of medicine. A year later, I was due to go into hospital to get a J-Pouch, but I was pregnant with my second baby. So, we put the operation off; the pregnancy went better than the first one, which was good.

Just before my daughter’s first birthday, I was rushed to hospital and what was more worrying was there were no more drugs to try. My large intestine was incredibly ulcerated and had to be removed! I remember the nurse talking about a bag. My thought was “No way! Isn’t a bag for old people?” I was only 26 and not ready for this. My hubby was serving in Afghanistan at the time, and I could not go for surgery without talking to him. So within 24 hours he was by my side telling me it would be ok. The surgery was very long, and I just remember all the drains and tubes and then the bag! With so much pain, I was connected to a morphine drip, but found out I was allergic to this. Throughout this entire process, I knew I had to stay strong and fight for my family. There were some incredibly low, dark days, but my hubby always made sure I was laughing. The best kind of medicine. A year later, I was due to go into hospital to get a J-Pouch, but I was pregnant with my second baby. So, we put the operation off; the pregnancy went better than the first one, which was good.

Then it was all gone, woohoo I was so elated that the J-Pouch was coming, no more bag oooohhh yes! It was magical for a small while, but then came the fistulas, the pain, the days of being unable to get up. I lost so much weight (25kg) and had to be continually readmitted back into hospital, not a life for a mum with two small kids and a fly-in-fly-out husband. I remember one operation, where I had lost so much weight; I was so weak and I woke up with no pipes or tubes, so I tried to go to the toilet and just collapsed.

My husband had to hold me up and shower me. This was not a life, and I was in incredible pain. We then decided to have a temporary bag again and rest the J-Pouch, but I still could not get my head around a bag for the rest of my life. So, one last try with the J-Pouch, my body just said no! I had more fistulas and more camera tests, resulting in a diagnosis of Crohn’s disease as well as UC. It came to the point I could no longer walk 100m without stopping, as the pain was too much. No drugs were working, and the pain was totally unbearable. Enough was enough!

Back on track

In 2017, I gave into the disease, it had won! I had to be able to be a mother to my kids as they were growing so fast. I tried doing everything for them and reflecting back, it’s amazing how much you can hide when in pain. So, the bag was back, I had a mind shift and was determined to make this work; it was time to get our lives back, time to get my life back and time to make a difference. Time to step up! With the children, I started to run, we had a reason to run and together we ran 12km to raise awareness for Crohn’s and colitis. Spreading the word and running was something I felt I could do.

Running with a bag sure has its problems: the chafing from the bag was a major factor, until my hubby came up with the idea of cutting a hole through a pair of support knickers then adding another pair on top, before adding the shorts! Genius! This was a fantastic solution, with limited rubbing and the support for the bag was amazing. Now I had to start thinking about food, I could no longer eat vegetables or fruit as my body would end up being in a lot of pain or blocked up. I tried blitzing the fruit, but the pain just wasn’t worth it.

In 2019, I decided it was time to run my first marathon. I found Braveheart’s, a charity that helps sexually abused kids, so I signed up. Race day was awesome, and I completed 42.2km. After finishing, it took my body about 10 minutes for the insides to settle, just trying not to throw up. It was nasty, but it was the beginning of something else. I met some incredible runners, who I wanted to join again in 2020.

After this, I did a 24-hour race, never say you can’t! Never let a disease define you. I covered 160km and still wanted to run more. So, in 2020, I signed up for seven marathons in seven days in seven states for Braveheart’s, however COVID-19 hit and I had to go virtual, so I ended up doing four marathons and three halves, as I had to play mum also, while hubby was away with work. The body was good, and I was changing a bag daily. I had accepted the bag as life now. I was still having leaks and sometimes skin got so sore, but nothing compares to the early days.

In 2021, the hospital operation date was set to have the removal of the J-Pouch. But first I was allowed to complete the seven marathons again, this time we managed to travel around Queensland. I kept my medical equipment on me all the time, which was lucky as one day my suitcase didn’t make it on the flight! I decided for that run, I would do the run in one pair of pants, as I wore cycle shorts I prayed that they would be supportive enough! I was so wrong; however, the amazing support team had managed to find the lost suitcases and they came down to the run. I remember the people at the aid station, asking if I needed anything. I said, “My big girl knickers!”; needless to say, they looked completely lost. I managed to pull over and sort everything out. It was incredible how better it all felt. After every marathon, I would try to take myself to the side, as my body continued to take 10 minutes to settle. The other lovely runners would always ask if I was ok or get the medic, but by now the medic understood my condition and was comfortable that I knew my own body. Today, I am still running with a bag, and I have bad days. But running is so incredible for my mental health and making friends.

Final Thoughts

My advice is this: if you are in a similar position, get a bag now! Putting it off is putting off your quality of life. I am now living and doing things I want to do. Don’t get me wrong, I still get paranoid that you can see it under my clothes, but now I open up to people, as so many people don’t know about Crohn’s, colitis or ileostomy. My family are incredible and have stood by my side through it all.

However, my story isn’t finished as I will have the J-Pouch removed this month. I understand that there isn’t yet a cure for Crohn’s and colitis, but we can continue to spread the word: you can do the things you love and there is a light through all the darkness. So please, stay strong because you can!

Family Ties

Family Ties

A large and  loving family has helped Susan Maye endure the lows of IBD. Here, Susan and sister Fionnuala share their experiences of living with IBD.

By Susan Maye

I grew up in country NSW, one of seven active children running amok in the countryside and dreaming of traveling the world. Once I outgrew my hometown I moved to Brisbane to study journalism.

I was 21 when I started getting ongoing bouts of diarrhea and stomach pains. It took more than 12 months, repeated doctor’s visits, and the loss of 12kg before I was referred to a specialist. His first words after the examination were: “You have severe ulcerative colitis. I have seen people your age die from this.” Already extremely sick and scared about the amount of blood I was losing, this was not what I needed to hear. He assumed I hadn’t taken my health seriously.

I had planned on travelling the world as a foreign correspondent – getting sick in my final year was not part of this plan and it impacted every area of my life. Although I managed to finish my degree, I wasn’t able to pursue fulltime work or postgraduate study. The financial and emotional stress that came with an unpredictable illness and the side effects of the medication took their toll on me. My friends also found it difficult to understand as I often looked well but wasn’t able to maintain my social life.

With my family scattered across the globe and my parents home raising my younger siblings, I relied on my aunt and uncle in Brisbane to “rescue” me from my share house repeatedly over the years, taking me to hospital and nursing me back to health. My parents visited and supported me when they could, but moving home wasn’t an option as I needed to be close to specialist attention.

Amidst all the uncertainty, I managed to get on with a semblance of life and got to know where all the toilets in Brisbane were. This didn’t prevent accidents over the years, but I learnt to take them in my stride.

Despite treatment, my IBD never went into remission and at age 24, after months of deterioration, I was hospitalised again. I don’t recall much from that time. My first clear memory is of waking up in intensive care with an ileostomy and a new diagnosis of indeterminate Crohn’s-colitis. I was surprised to see my brother, who was living in the US at the time, and my sister from Sydney, not realising they had been told I might only have 24 hours to live – I was too weak to process anything at that point. Whilst it took me no time at all to manage my ileostomy, it took a lot longer to accept it – particularly with ongoing complications.

I slowly regained my health and a few years later was medication free and well enough to travel to Singapore, Malaysia and Cambodia. After working in Brisbane for another few years, I moved to London to work. I had a great time over there and backpacked through Europe, North Africa and the Middle East, managing any complications or “accidents” with a grace and efficiency I couldn’t muster in the early days. I now call Melbourne home.

I’ve had a number of surgeries over the years, including two in the past 18 months for fistulating  Crohn’s. It’s likely I will need drug therapy again in a bid to avoid major reconstructive surgery. This disease stole many years and there were times I felt great despair. But it has taught me acceptance and a resilience I didn’t know I had.

None of it has stopped me trekking through Borneo last year, getting my SCUBA license or planning my next adventure. Despite everything, I’m grateful I am now able to live an active life. I found the loss of my physicality during the illness really difficult.

After my recent surgeries I was looking for a way to take some control back, so I started training for Run Melbourne. On the day, I not only managed to make the distance, but also raised $2500 for CCA. In solidarity, my sisters, Thomasine and Fionnuala, ran the Sydney City2Surf this year, also fundraising for CCA. My family members are my closest friends. We have been through a lot together.

Hearing other’s stories and experiencing the lack of understanding that surrounds IBD – let’s face it, it isn’t standard dinner party conversation – makes raising awareness and educating the public and health professionals really important to me.

Fionnuala Maye’s Story

IF you ask a little girl what she wants to be when she grows up she may tell you she wants to be a journalist, or an air hostess, or a scientist or doctor. When I was a little girl I wanted to be my big sister Susan. She had beautiful, long blonde hair, she was athletic, intelligent, outspoken and always surrounded by friends doing fun things.

She moved to Brisbane to study journalism at university. Coming from a large family, there was no way our parents could help her financially so she worked full-time hours at Kmart while studying a full-time. She also managed to continue her outgoing social life. Then she started getting sick. Upset tummies mostly. Tummy bug after tummy bug. Or so we thought. After months of vomiting, diarrhoea, weight loss, tests and doctor’s appointments, a specialist diagnosed ulcerative colitis.

While all this was going on in Brisbane, I was carrying on my selfish teenage life in the northern NSW town we all grew up in. I remember mum telling us what the diagnosis was and went and looked in the encyclopedia at school to find out what it meant. “An inflammation of the bowel” didn’t sound that serious.  When Susan came home for Christmas that year looking like a concentration camp survivor, unable to eat anything but potato, rice and a dash of soy milk, the reality of the illness’ seriousness started to hit me.

While coming to terms with her illness and trying to manage it with diet, Susan was still studying journalism and managed to graduate with the university medal for being first in her course.  Unfortunately, the medication and managed diet was not successful in combating the disease.

After years of illness, Susan was hospitalised with severe bleeding and dehydration. The doctors carried out an emergency colectomy. I’ll never forget the night our dad, a conservative university lecturer not known for great shows of emotion, arrived home from Brisbane. He put his hand on my shoulder while gazing vacantly off to my left and said: “I think you’d better come to Brisbane this weekend. It might be time to say goodbye to Susan.” Our brother flew back from Philadelphia where he was working, and our oldest sister flew up from Sydney. For the first time since the older kids had started moving away for university, we were all together again – and it wasn’t for Christmas.

I remember that time as so surreal. After the operation Susan contracted an infection and pneumonia and ended up in a coma in intensive care. She also had a new diagnosis of Crohn’s disease. I had never felt so scared or helpless in my life, but I knew that Susan was a fighter and I hoped and prayed that she would fight it. And fight it she did, and still continues to do so today.

It’s such a cliché but I am so immensely proud of my big sister. Not only has she dealt with her ileostomy and several subsequent surgeries with humour (it’s widely referred to as her “poo bag” in our family) and pride, but she has also got up and got on with life when she has had constant complications thrown at her. She hasn’t let her ileostomy stop her from travelling to places such as Syria and Jordan, she hasn’t let a fistula that won’t heal stop her from completing her PADI diving course and travelling to Borneo to scuba dive and climb the highest mountain in South East Asia. And she didn’t let it all stop her from training for and running the Run Melbourne event, raising $2500 for the Crohn’s & Colitis Australia Changing Lives Challenge. And all while still being her usual beautiful, sociable, outgoing self.

When I grow up I still want to be just like my big sister Susan.

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Stacey’s Story, Learning to Love My Stoma

Stacey Sweedman (second from the right) celebrating Melbourne Cup with new friends from the Queensland Colostomy Association.

Stacey Sweedman

Diagnosed with Crohn’s disease at 21 and having battled symptoms since 18, it was hard to hold down a job, eat in public or go out after eating.

Finally it came to the crunch. After another visit to the emergency department my surgeon sat on my hospital bed and said: “We can’t reconnect intestines if they are as bad as yours – you are getting a poo sack.” Okay, this was probably not how it was said but my mind decided to interpret it that way.

As the days went on I got used to it a little; after a week I bargained with it: “You can stay for now but don’t expect me to like you”. Two weeks later I realised I had been out shopping, started eating in public and in general feeling healthy like that person I once was years ago. This is where it got hard: Why did this little poo button on my gut make me feel like I once did years ago in the care-free healthy days?  I thought, “Right, let’s put you to the test”.

I started swim training again, hoping that everyone was lying and this thing would fail in water. It didn’t. I put this poor little medical miracle through the ringer and it was still just keeping me healthy. I thought, “I am starting to like you and think you’re kind of cool, if you’re going to give me my life back. But just because I like you, maybe no-one else will like us as a team.”

The next test was a dating site, leading to very blunt conversations: “How do you feel about humans with poo sacks?” While I am very socially awkward, the right people find the approach rather funny. Rejected by one, I was accepted by many who informed me that I’m still good looking and have a cool personality and when in public look no different to anyone else, so why would they care about me having a sack or not?

Don’t get me wrong. I have had my leaky bag and down moments but at the end of the day stoma juice is a lot easier to wash out of clothing than battling a fear of the too well-known disease.

While my story doesn’t always sound pleasant, to me it is, because I have back what I thought I would not see again: my health.

This is an edited excerpt of an article first published in the Autumn 2014 edition of Inside Insight

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Jill Corbett’s Story

JILL’S FULL LIFE

Jill Corbett, who co-organised the fundraiser Newcastle Bowel of the Ball in June 2012, shares her story about colitis, colon removal, and moving on

Relief with Diagnosis

I had diarrhoea for six months straight before I was diagnosed with irritable bowel syndrome in July 2008.  The GP did a blood test, told me I had IBS, then said I should come back if I should start passing blood.

When I did start passing blood, it took me three months to tell anyone because I was so scared and I thought it might be cancer.  When I finally saw a gastroenterologist, who did a colonoscopy and gastroscopy, I was diagnosed with ulcerative colitis.  I was actually relieved to get this diagnosis, and thought “Well that’s an explanation for all my troubles.”  It certainly explained all the problems I’ve been having for years:  bad mouth ulcers, rashes, massive bloating after every meal, severe fatigue, sleeping away days, and many more irregularities.  By the time I was diagnosed, my symptoms also included severe belly pain and alternating between constipation — for up to a week! — to constant bloody stools.

Getting diagnosed made me feel okay about telling close family members and others who I felt needed to know.  I was still embarrassed, but at least I had an explanation for why I kept needing to go to the toilet!  I also told my work mates, because I do shift work, including 12-hour shifts.

Life as Normal

My gastroenterologist initially put me on a low dose of Salafalk granules to help alleviate the symptoms. At the time, I only had 20 cms of disease in my colon and was sent on my merry way.

In all honestly, I did not take my disease as seriously as I should have. For me, the diagnosis was just an explanation for why I was sick, and I still did my utmost best to continue life as normal. I did try different diets but none really helped, much to the dismay of some people who think bowel disease is purely about what you’re eating, implying that I was making myself sick with what I ate.

Anyway, I still continued going to bootcamp and partying with all of my friends until I would get really sick and have to take some time out, but even during this time I never stopped working. I actually am proud to say that I never took time off work because of my disease! I wasn’t going to let it impair me. I even booked a European holiday of a lifetime!  Unfortunately, it was during my six-week tour that I began to get very sick, and ended up in hospital in Greece.

As soon as I got back to Australia, I went straight to my specialist, who started me on steroids immediately. I was too sick to have another colonoscopy and he performed a sigmoidoscopy which now showed that my entire colon was severely diseased.

On top of all this, I experienced all of the side effects from the steroids, including the fat face and the hunger.  I also started to lose some eye sight.  I had pretty much every side effect that was listed on the bottle, in either a small or big way.

“No Hope of Getting the Colon Better”

The decision to remove my colon was made by my doctors after I had spent three solid weeks in hospital.  While I was in hospital, things got so bad that I couldn’t roll from one side of the bed to the other without pain and needing to run to the toilet. They put me on cortisone injections every six hours, plus infliximab and cyclosporine.  One by one, each treatment failed. It was heartbreaking. I couldn’t do anything to get my body working and I was eventually told that if they did not remove my colon, I might not survive, as my bowel could perforate at any time and there is no hope of it getting better.

In the meantime, I had lost a lot of weight.  I was a walking skeleton with a moon face and I had no energy to move.  I had no idea why my disease could come to this, and it was  very surreal walking into hospital one day and leaving four weeks later with an ileostomy bag and without my colon!

Again, I put on my best brave face as I started a new dream job only three weeks out of hospital and tried to live as normal as possible again, including bootcamp, regaining my muscle mass and strength, and going out with my friends.

I have had three surgeries since my colon was removed, and have been seriously sick with a lot of complications.  It was during this time that I realised that if I survived this, I wanted to help people. I wanted to get awareness for this serious disease.

Eventually,  I took a turn for the better and made my way back to living and even going through a fourth surgery — to remove my bag — relatively problem-free.

Back to a Full Life

I am now 100% disease free and living life to the fullest.   I now take no medication at all bar my required supplements, which include iron, a Vitamin B12 shot every three months (along with my general checkup), Vitamin D, and folic acid.  I still get very tired and don’t bounce back as quickly as I used to, but I just rest a bit more than before and that solves the problem.

My advice to others with IBD is:  take your condition seriously, learn the possibilities, but don’t let it rule your life. Live life to the fullest when you can and rest when you can’t! Although I had a horror experience with surgery, it all worked out in the end and it is honestly the best thing that could have happened to me. I now live my life without fear that I won’t make it to the toilet or that I will be pain or I don’t know if I will be well for a special event. Having surgery has given me back my life. So don’t be afraid of a bag that may be temporary, for a lifetime of living.

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