I don't consider my IBD as such a bad thing, as I have to live with it. I tell people about my condition, as there is nothing wrong with it.
I was diagnosed with IBD when I was just 18. I had symptoms for a whole year before going to the doctor – I don't know why I didn’t see him before that – I think it's because I felt too embarrassed. I didn’t tell anyone in my family until the situation was impossible to cope with.
By the time I went to see my doctor, I was going to the bathroom about 20 times a day and losing a lot of blood. I couldn’t leave the house. I was really scared.
But when I was diagnosed I felt very unconscious about it and I thought I would just fix it so I was not that scared. Even though the symptoms were frightening, I felt strong and I didn’t really consider it to be as serious as it revealed itself to be.
At the beginning, my life didn’t change too much. I started some medicines and they worked. I had a doctor who didn't care too much about my diet or lifestyle. But I was also living alone so eating quite badly. I also didn’t always accept my condition or take my medication regularly enough.
After a year, my symptoms started to come back and I had to change my medication to a stronger treatment which made me feel really bad.
Telling other people
At the beginning I tried to hide my IBD – just because I thought I could have control of it. I didn't feel any motivation to tell anyone.
Later on, when I got really sick, I began to tell everybody – even people I didn’t know – I would tell them that I had this condition and may need to go to the toilet at unusual moments. This created a safety zone. When people don’t know what is happening – they may think very bad things. The imagination is worse than the real fact. So by telling them, I knew there wouldn’t be anything unexplainable.
I don't consider my IBD as a bad thing and I have to live with it. So I tell people about my condition: there is nothing wrong with it.
Managing my IBD
I tried lots of different medicines but I wasn’t doing very well. For over three years I was in and out of the hospital a lot and my symptoms were really bad. I was feeling really scared of my illness.
By this time I was getting ready for my wedding and I was really anxious. On the day of the wedding, I was not upset for me, but the people I love – because they were constantly worried. I was so anxious about having 'a problem' during the day, that I transmitted this anxiety to my husband and sister and whoever was close to me. I couldn't live any moment without this anxiety and it was taking over everything.
Then a few days after my wedding I ended up in hospital, seriously ill.
I was in hospital for four weeks. It was my longest and most terrible period. After lots of tests, the doctor said there was no more help for me and that I had to consider surgery. But I wasn’t ready to accept this. I felt that there had to be another way. But at the same time I was really at rock bottom and had lost a lot of hope.
I cried and closed myself in the bathroom. My sister helped me a lot at this time and tried to tell me that “I could do it.” Slowly I believed her and the most proud moment for me was when I told my doctor that I wasn’t going to do the surgery. I finally realized that I had strength and could help myself. In that moment I knew I couldn’t lose the hope.
So I decided to go on, although no one was confident that I could do it. Even I wasn’t sure I could do it: but I knew, at that point, that I had to do everything possible to help my IBD.
With IBD there are not a lot of positive stories – people used to say it wasn't an illness that you could cure. This was difficult to hear. At the same time, my sister was reading a lot of books about other ways of managing IBD: meditation, acupuncture, yoga etc. and she began to give me some input. So I tried, with not a lot of confidence, but I was sure I wanted to try everything I could. I started with stuff to keep me more calm – meditation, yoga, physical training. I also began to eat more healthily and started to take omega 3. I don't know what worked, but all the stuff together seemed to help. I also left university and all stress - and this was the moment in which I started to get well like I never was before.
What helped me a lot was also starting psychotherapy. IBD is such a violating disease – you need someone to help you to face it. Sometimes we feel we have no power and the psychotherapy was able to teach me that it was me that had power over my illness. It started to help me to care more about my body.
I had therapy for one year. During this period I felt physically and mentally well. I started living again. Eleven months after my last hospitalization I took part in an international student exchange scheme called Erasmus. I went to Valencia, in the south of Spain for 5 months. Before this would have been impossible - I was afraid of every strange place – I could have never imagined going to another country. But after the psychotherapy I was able to feel confident enough to do this.
When I got to Valencia, I was a bit scared because it was the first time since I was diagnosed UC that I was away from home for such a long time. Moreover my self-confidence was not so good after the most severe phase of my disease. However, talking with the coordinators I explained the situation, and I was assured that I could go back home if I needed to. After a while, I realized that everything was going in the right direction; I was living a new and independent life, and this is one of the greatest achievements of my life, especially as I had so many failures before. In the end, I managed to complete my Erasmus placement and had an amazing time.
Of course it is impossible to keep up everything I was doing then – so now I try to find a balance. I just eat healthily; I eat fresh and organic foods. I take omega three and I try to keep calm and do yoga and kickboxing and something to eliminate the stress. Psychotherapy was most effective I think. There is something that works better for you and for other people – I have learnt to recognize what had helped me.
Now I have been out of the hospital from eighteen months and I don't have symptoms anymore. I don’t know why – maybe because I’m taking better care of myself and also because I am more rigid in taking medicines and I never skip a dose. I think I have found the right way to manage the disease.
Advice to others
- You should not be scared of your illness: there are a lot of other symptoms and these are very scary, but you can take control of your body
- Accept advice; when I was very sick – I thought no-one could understand my condition or me. I was stubborn and angry. So I was not ready to accept help - at the moment when I needed the most help
- Try everything before surrendering to the illness. Remember there is the possibility to get the power over the illness
- I think maybe everyone with IBD should try psychotherapy it really helps to manage your illness
After Erasmus I came back to my studies and graduated from university last month. I’m really proud of where I am with my education and I am now applying to do my PhD In communication studies.
What I notice is that, the more I try new things or the more I achieve, the more I can increase my self-esteem. It can be very easy to lose it, for me it's a bit of blood or a twinge in my belly for example. That's why I have to keep going, and I now have a good reserve of confidence and self esteem for when I need it.
I hope to continue with my education and keep challenging and improving myself!
Disclaimer: NOT A SUBSTITUTE FOR MEDICAL ADVICE These patient stories are for informational purposes only and are not intended as a substitute for medical professional help, advice, diagnosis, or treatment. You should consult with your doctor before making any decisions regarding your health.