Meet Sarah

Meet Sarah

My name is Sarah Wood, I could be defined in many ways but through everything my focus will always be my lovely family. I’m a 55 year old mother of 3 fabulous daughters Betty (22), Rosie (20) and Evie (17) and wife to Rowly. Parenting is a joy and a privilege and mostly exhausting, every stage brings something new and I love the energy of the young people who are always around me. 

My main working life started in 1990 when I qualified as a teacher and have always worked in some sort of educational role with children, young people and their families with SEND. I am now a lead advisor of an SEN advisory team in LBB Bromley. 

I love to be outside walking and gardening. I try my best to keep fit but this is sometimes a bit of a challenge. As a massive Strictly fan, I took up Ceroc dancing and this is a really fun, friendly way to keep active. As a bonus, great dresses and shoes are required as well. In my downtime I love to chill with a film and a glass of wine and have learnt never to fight the need to sleep. 

I was diagnosed with Crohn’s in 1983, I was 17. Although this was a difficult time, my support team got things under control for a while. Unfortunately, in my early twenties life became unbearably difficult. I decided I needed to find a specialist with a depth of understanding of Crohn’s and its challenges. It took a visit to my local MP but I eventually got an appointment at a specialist London hospital. It was a truly life changing experience, I developed complete trust in the medical team so quickly. I knew I would get better. The outcome of the advice meant that I had a permanent ileostomy formed, I was 26. The recovery was quite lengthy, because the Crohn’s was so advanced, but aside from that my quality of life was so much improved. I no longer needed regular medication with debilitating and wide ranging side effects. Besides the odd blockage, which I learnt how to manage, I didn’t look back. Tiredness has always been a factor for me, but I never fight it.

My 3 pregnancies were very straightforward but giving birth was another matter. My first child was a natural birth but this was so difficult due to internal scarring from the original operation and disease in my perineum. Following lots of advice my next 2 births were via a c-section. This was much more straightforward. The recovery was also much improved. 

In more recent years the shape of my stoma has completely changed. It retracted inwards and dipped on one side. This has led to great difficulty finding a suitable bag that stays in place. Initially the medical team thought I had a hernia and this was causing all the issues. The stoma felt like it was dragging downwards all the time which was really uncomfortable and very tiring. Moving around became very difficult. Because of the multiple leakage the skin around the stoma became inflamed and very sore which also impacted on how easy it was for a bag to stay in place. I have tried a huge range of bags and skin support. I have had support from the GI team to ensure there was no active Crohns causing the issues, several MRI’s and support from the dermatology team including a long investigation into a possible allergic reaction to adhesive in the stoma bags. The consequence of everything has been a decision to move and reform the stoma from right to left side of my abdomen. This was done very recently in mid Jan 2023. I have waited 2 years for this surgery and this has been and extremely challenging time.    

I have felt very uncomfortable going out far from home. Because of the stoma retraction and related gravity – a lot of the leaks would happen at night. This has really impacted on my mental health and capacity to work. I have an extremely supportive team and have tried to be open about the issues, everyone is very sympathetic. The bottom line is that you do feel your life is on hold.

Following the surgery things are now much improved. The leakage is diminished and things feel a lot more comfortable. The surgeon discovered I didn’t have a hernia, despite several MRI scans the view was different internally.

The distribution of fat around my stoma had changed over time. The stoma had been in place for nearly 30 years and it's not clear exactly what caused this but several of the aftercare team have referenced changes in fat distribution due to the menopause. I have looked into this further and have constantly tried to go over any changes in my own behaviour or lifestyle. You try and think of everything but the menopause seemed like such an obvious thing yet none of us joined the dots. It's extremely difficult to pinpoint what has happened and I'm really grateful to the teams who have supported me to get this far. Especially the stoma nurses who have always been on hand to help with ideas and listen when things are at a low point. 

With both surgeries the most challenging aspect for me was preparing mentally and feeling confident about what was going to happen. I had to be ready to do it. As a young woman I was so unwell, there was no alternative but I had to be ready and trust the team.  Most recently the wait to know when surgery was going to happen was very challenging. The demands of everyday life had become so difficult.

The team were not sure if my most recent surgery would work for me. This was a worry but the situation had become so difficult I needed things to change and try and move on. The day before the surgery my eldest daughter asked me if I was excited. I knew what she meant but I didn’t really know how to answer. I didn’t want to wish my life away but really wanted to be on the other side of things and on the way to a recovery. I believe the emotional side of surgery is complicated. The teams are incredible, I feel lucky with my experiences but we are totally in their hands. 

Over time the demands and challenges of stoma life have changed a lot. Initially I struggled to deal with the physical change to my appearance, but the overall health improvements soon helped me overcome this. I no longer needed to plan any trip outside home, guided by where I knew there were nice toilets. I could be spontaneous and flexible. I had a radar key – if required and could manage. The difference was immeasurable, that said the stoma/bag is always on my mind. I’m not in pain or uncomfortable but it is always in my consciousness.  Work was the same, my work team were so supportive.Over time, when my children were small trips out and holidays could be a worry, but I adjusted things and managed. 

More recently the issues that have led to the recent surgery have become completely overwhelming. Planning trips out with spares of everything and constant panic everytime my stoma worked wondering if it would leak.

I constantly worried that if it worked and didn’t leak I probably smelt. I have been uncomfortable and in pain most of the time. Life was a struggle. The facilities available for changing aren’t readily available everywhere. It's so much easier to stay at home or places you are very familiar with. This impacts on you as a person becoming disconnected and isolated. 

Despite the most recent raising of awareness around bowel cancer and life with a stoma, I still don’t feel this is something that can be discussed openly and is something that is easily raised. Things have moved on since my first stoma surgery but there is definitely more to be done!