An open and honest account of my IBD journey for IBD Relief
Name: Clemmie Macpherson
Year of Birth: 1989
Type of IBD: Ulcerative colitis (pancolitis)
Diagnosis Date: 1999
Symptoms at Diagnosis: Weight loss, diarrhoea, bleeding, and abdominal pain
Details of Surgery: 2001 - Total colectomy and ileostomy formation. 2009 - Ileal Pouch Anal Anastomosis (IPAA)) construction and ileostomy reversal
My journey with inflammatory bowel disease (IBD) began aged nine. My memory of the many months between my diagnosis and total colectomy are a little hazy, I think it’s the body’s way of coping with trauma particularly as a child – to block it out. But there are some clear memories that really stand out. I first started experiencing symptoms when I was away at boarding school.
I remember almost having an accident mid exam when the teacher wouldn’t let me leave to go to the loo. I didn’t tell anyone about the diarrhoea I was experiencing and when the bleeding started, I think I was too scared to talk about it and I didn’t know what to do.
It wasn’t until I was at home in Hampshire during the holidays and forgot the flush the loo that my parents discovered there was something wrong.
I remember so clearly sitting in the kitchen with my sister and my mum coming in saying she had found blood in the loo and asking who’s it was. I denied it initially but when she continued to question I burst into tears and told her it was me.
I was immediately rushed to the local doctor, then A&E. What followed was months and months of endless hospital visits, colonoscopies, drugs and a huge disruption to mine and my family’s lives.
I was tried on a variety of drugs to treat my ulcerative colitis, none of which seemed to work very effectively and was put on ever increasing doses of steroids. At one point I was taking almost 18 pills a day to try and get my symptoms under control.
I went through periods of near remission, but flare ups were a regular occurrence - my family always knew I was heading for one when I said I was craving a McDonalds!
I was tried on Modulen for a short period too, but it seemed to make me worse. I couldn’t drink it (it made me sick) and when my mum told the doctors she didn’t think it was working, they told her that I was being silly and childish, so I had nasogastric intubation (a tube in through your nose into your stomach).
I remember being sick still every time I had a feed and worrying that the tube was going to come out of my mouth. Finally, they removed the tube and allowed me to start eating again.
I recall being ravenous that evening and mum went to huge trouble to cook a delicious roast chicken as I said it was what a fancied the most, but I only managed about two mouthfuls before I felt stuffed!
We tried almost everything, including alternative medicine and the only thing that seemed to help was acupuncture. I remember going to the acupuncture clinic and having all the needles put in my tummy. When I next went to the loo there was no diarrhoea and no blood, something I hadn’t experienced for ages. Sadly, this didn’t last and within 24 hours I was back to where I had been and I remember thinking I felt worse, but wondering if that was because I had experienced some respite.
I was also taken out of school and home schooled for a while because every time anyone got a cold or bug I would come down with it too and it would trigger a flare up. Every day was a struggle and the last few months before surgery were the toughest.
I was a very active child, always outside playing on our farm and I was very lucky to have a pony that I adored. Alongside my family, he helped keep me going and stay positive, but when I started to say that I didn’t have the energy to ride him my family knew things were going downhill.
On the last day before I was rushed into hospital, I woke up and had breakfast, but it came up pretty quickly. I tried eating something else and the same thing happened. It was what we had been fearing - my body had started to reject everything and my body was starting to shut down.
I was rushed to the Royal Free Hospital in London, but I was too ill and too weak to withstand surgery (I was 2.5 stone aged 11) so I spent a week on various drips and monitors before they could operate.
I don’t think I had any idea about the extent of the surgery I was having. It was only when my dad burst into tears in the lift on the way down to theatre that I realised it must be pretty serious!
The surgery to remove my colon and create a stoma went really well, I recovered reasonably quickly and adjusted to having an ileostomy really well. I was able to start riding again, to go back to school and to do everything a normal 11-year-old would usually do which felt wonderful!
When I tell people I lived with a bag from the age of 11 to 18 they often remark on how hard it must have been and how awful, but it wasn’t. It gave me my life back and for that I was so grateful.
I did everything that my friends did throughout my teenage years with no problems (apart from the odd bag leak and the loss of a bag whilst diving into a swimming pool on holiday!).
The only thing I do regret was not being more open about my bag when I had it. I talk about it very openly now, but I didn’t when I had it - very few people knew. I don’t know why I didn’t talk about it as I know everyone would have been so supportive.
I always knew that between school and university I would have an ileal pouch anal anastomosis (IPAA) construction - also known as a J-pouch - and stoma reversal. Whilst all my friends were planning their travels, I was planning my hospital visit and surgery!
It was tough going from being so well to being back in hospital again, and I found the early days of recovery challenging at times but both parts of the surgery went well in January and April of 2009 and by October I was firing on all cylinders again and starting my first year at The Royal Agricultural University.
Things were going so well until I contracted norovirus in Spring 2010. I seemed to completely lose my appetite for about six months and lost loads of weight.
I never really got over that but carried on for the next couple of years enjoying university and managed to come out with a first class degree.
I moved to London after university and took on a stressful job in PR. My health started to deteriorate further, I felt sick every time I ate, I continued to lose weight, and I started to lose my hair.
I had lots of tests and was told it wasn’t pouchitis and everything came back as normal. I was diagnosed with irritable bowel syndrome (IBS)and told it was just part of the surgery I had and I would have to live with it.
I felt completely helpless and wondered how I was going to continue feeling that way then my mum suggested I go and see a nutritional therapist (NT).
I was reluctant but I went and it completely changed my life. We looked at my diet and lifestyle and made some changes and within two weeks I felt better than I had felt in months, and this continued.
I wondered why I had so often been told that diet and lifestyle makes no difference when it was clearly simply not true. I was so inspired by my experience that I quit my job in PR and retrained as a Nutritional Therapist, studying at Institute for Optimum Nutrition. I felt I had to be able to help others with Crohn's disease and ulcerative colitis like I had been helped and spread the word about how important diet and lifestyle are for these conditions and for our health.
It has been a long journey and an eventful one, but I wouldn’t change it for the world - it has made me who I am and got to me to where I am today. I founded the Nutrition and Lifestyle Medicine (NALM) Clinic in 2018 and have the most rewarding job as a nutritional therapist helping people every day who have IBD and IBS, helping to change their lives too and support their conditions.
I often wonder what might have happened if I had focused on my diet and lifestyle before - would I have had to have the surgery? Or was the disease always going to progress as quickly and aggressively as it did?
This is obviously a question I will never be able to answer, but I know I am helping to support my body every day now with the way I eat and the way I live.
I feel better now than I can ever remember feeling before and I have a passion, focus and drive that is stronger than ever to help others with the work I am doing.
I am totally passionate about helping people with their IBD and getting the message out there as to how important the food we eat and the way we live is to our quality of life living with IBD.
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