Sarah’s Story

Before my diagnosis, life was hard. From the age of 12, I had suffered stomach problems and have been in and out of many hospitals and had many lengthy stays. IBD was never mentioned as a possible cause, and every time I was admitted, I received a different diagnosis. Everything was suggested as the cause, except Crohn’s disease.

Every time they told me that they just didn’t know what was wrong with me. Time and time again, I would leave the hospital crying in pain with no answers. December 2017 was one of the worst points in my life. My illness, which was still undiagnosed, was now affecting my mental health as well as my physical health.

I then saw a doctor in Dubai (Dr Filippos) who changed my life. I took all my previous medical reports with me and he suspected right away that I had Crohn’s disease. This moment had taken 12 years. He recognized all my symptoms and immediately ordered a colonoscopy. I can remember his exact words to me. He said “Sarah, you have one week. Go and eat whatever you like, enjoy every food you can. But then I need to see you in a week’s time for an hour long appointment”.

I suddenly felt overwhelmed and thought to myself – this is ok, this will be something we can treat, I felt like the world was finally smiling at me and I was sure I already have the right diagnosis, although I didn’t know it was Crohn’s, I felt it could be the end of my suffering…

When my doctor first told me I had a chronic illness, I was in shock. My mum was with me for support and I just remember trying to take it all in, trying to grasp everything I was being told. I was sitting there, looking at a model of the intestine, trying to listen to what he was saying, but I was shell shocked.

After finding out about my diagnosis, the doctor asked me to go to the lab and do some blood work, I walked out of his office feeling so numb. Mum was talking to me, trying to reassure me, but I couldn’t hear what she was saying. I remember getting to the laboratory, pushing to door open, and just collapsing on the floor and crying literally in the middle of the hospital. My mother came in and tried to pick me up, to move me off the floor, but I couldn’t move. At that moment, I felt like my world had ended.

I called my father and told him. His immediate reaction was ‘you don’t have to accept this diagnosis! We will see another doctor’. We had an argument and I hung up. He was only trying to protect me, but I didn’t want to hear this. I then called my aunt who I am very close to. She was clam and reassuring, but I still didn’t really hear the words of advice people were saying to me.

When I was first diagnosed, I felt very sad and very angry. I questioned whether I had done this to myself. I knew nothing about IBD and had never heard of Crohn’s disease before my diagnosis, so I immediately questioned whether I should have been doing things differently to protect myself.

Honestly, my initial thoughts were that I didn’t want to live.

It wasn’t just me who was immediately affected though. It was a wake-up call for my whole family. It affected them and everyone around me. For them to suddenly see me so angry, so depressed, so ill and bed bound was a huge shock.

I am a person who needs to know exactly what is going on, so one of the first things I did after my diagnosis was begin my research. With this research I became skeptical. I won’t take any pill without first knowing exactly what it is, why I need it and what it will do to me. I drove the doctors mad!! And I knew I didn’t want a lifetime taking medication.

I accepted the diagnosis straight away. But accepting that I could still have a healthy, happy life took a lot longer. It took me a year, maybe even more, to accept that living with a chronic condition like Crohn’s didn’t have to stop me doing anything. I still have to work on myself. Still, during flare-ups I go through all the emotions all over again, I go through having to accept things all over again. Every flare up feels like a new diagnosis. It still shocks me to this date whenever I see/feel symptoms crawling back at me. I would say, acceptance is a never ending journey.

I wanted to talk to someone who was in the same situation as me, or who was on the same medication. I wanted to reach out and get reassurance from someone in exactly my position – but I couldn’t find anyone to talk to. The doctors didn’t know of anyone locally supporting IBD patients.

At one stage during my illness, not long after diagnosis, I spent around 5 months in hospitals in Dubai then Abu Dhabi, receiving treatment and pain management. I was so unwell. One day, a social worker in the hospital told me about a lady named Abeer. The social worker suggested I call her as she also had been receiving treatment for Crohn’s.

I called Abeer immediately as she was the first real person I had ever heard of or spoken to who had IBD. I am eternally grateful to her for sharing her story with me. She had a network of other IBD patients who shared a What’s App group to offer support to one another. She added me immediately and this was a real turning point. Doctors had provided me with lots of information but knowledge from other patients was invaluable.

There is a lot of stigma attached to IBD. In fact, even some doctors don’t like to explain the side effects and I felt like nothing was explained to me in details. I am the type of person who needs to know everything, especially when it’s something that concerns my health and my life, so I found this very frustrating!! As a society, we don’t like to talk about any personal things, especially about bowel conditions. I even had older members of my family ask me not to tell people what was wrong with me. It’s crazy when people think that a disease can de-value someone, this is something that was chosen by God, I didn’t do it to myself.

In the beginning, a lot!! Two months after my Crohn’s diagnosis, I got diagnosed with occipital neuralgia, a condition which affects the nerves that run from the top of the spinal cord to the scalp, causing pain in the back of your head and the base of your skull. Then, 5 months later, I got diagnosed with fibromyalgia, widespread chronic pain in response to any type of pressure.

Certain medications for Crohn’s disease have side effects, and unfortunately, these were the side effects for me. IBD drugs work to suppress the immune system, so you are unfortunately more susceptible to other things.

There are so many things I love to do. I was always a good tennis player, up until a year before my diagnosis, then I became too sick to play. Following my diagnosis, I followed a different path and I took up yoga, meditation and learnt a conscious way to live. I realized that what you do is up to you. If you want to let an IBD diagnosis limit the things you do, then it will. I made a conscious decision to not let it stop me doing anything I wanted to do. There is always a way to fight – you shouldn’t give up on living. You can always find a way. When I’m in flare-up, I let my body rest, giving it what it needs. It’s all about creating a balance between what my mind, my heart, and my body wants in each moment.

Love every fiber of your body! Prioritize yourself, don’t live in guilt. And finally, don’t be selfish but learn how to love yourself. This is what IBD patients don’t do. I have seen this around the world.

Someone once told me to ask myself ‘Are you ready to let go?’. This changed my whole attitude. I cried and realized ‘Yes!

I have received every type of treatment for Crohn’s!

First biologics and chemotherapy. For me, it was hard on my body and after a short time I developed antibodies to the first biologic I was taking. I then tried another biologic, but this didn’t work and I was suffering worse flare ups. I suffered terribly with side effects and in response to two of the biologics I suffered extreme anaphylactic reactions, requiring further hospital stays to receive antihistamines. I ended up trying every biologic available but had to stop them all.

I had surgery in the US in 2019 as medication wasn’t working anymore. When they removed part of my ileum, they found that it was extremely inflamed, and this offered an explanation for all of the pain I had been experiencing over the years. I still required a biologic – at this point there was only one left that I hadn’t tried, but yet again I suffered a severe anaphylactic reaction. I had got to the point where I had exhausted all options for IBD treatment. Currently, I’m trying to restart a biologic that I took before, hoping it works this time. Whatever the outcome is, I’m sure I will eventually find a solution.

Initially, when I saw my surgery scar it brought me down a lot, but I now view it as part of my life, that reminds me of how strong I am. I have guts and I am proud of it!!

Talking to a good psychologist is vital. Doctors can take care of the physical side of an illness, but you need to care for your mental wellbeing as well.  I was put on anti-anxiety medication when I first got ill, which eventually got increased to high dose anti-depressants. This can only help you to a certain point – the rest has to be up to you. A good support network is key to getting you to this place. You need to search for the power within you to change yourself. A friend told me “Your personality creates your personal reality” and I remind myself of this daily. At that point I decided the anti-depressants weren’t for me and threw them away. If I ever need to take them again I will, just not forever. These medications are like a bridge that get you to a certain road, then you have to take back the wheel and move forward independently.

• Abeer, the first person I ever spoke to who is going through what I am going through.
• My psychologist. They can provide a safe space to talk without any judgement.
• My mother, my sister and my father – Crohn’s has made us stronger. We may have different opinions on what treatment I should/shouldn’t be receiving but they are always there for me.
• My doctor. No one does what he does. He cares about me. He is my biggest support and the one person I was never angry at.
• Youtube! Videos I found online when I was first diagnosed were a huge help. I realized there were people all over the world going through what I was going through. I also learnt that everyone’s journey with IBD is different.
• I find traveling helps too – meeting different people and being open and honest is key to helping people understand what you are going through.
• I found listening to people online was an invaluable resource for knowledge and support. Now I have people contacting me who have seen my posts and tell me it saved their life as they could identify with my symptoms and what I was going through. It has helped them move on with their life and that is amazing.

The life I am living, and how happy I am now, is my only ambition for the future. At one point, when I was desperately ill, I didn’t think a future would ever look like this. Now I realize that if I didn’t have Crohn’s disease, it wouldn’t be possible. I have found my own way. It is uplifting and I wouldn’t have it any other way.