Wednesday, 18 May 2016

My Story About Being Diagnosed With Crohn's Disease

Hi everyone, I’ve decided to share a personal blog post as World IBD Day is today, May 19th 2016 and I wanted to share awareness about living with Inflammatory Bowel Disease. I had an extreme fear of doctors, which made me hide the fact that I was extremely sick in 2011. I tried to get out of a moving car once when I was told that I was being brought to the doctor! It got to the stage where I couldn’t avoid it any longer because I was in excruciating pain. My weight was dropping rapidly and I was hiding food because I wasn’t able to eat. I didn’t want to worry anyone around me but it was obvious to others that something was wrong. My symptoms started when I was 12, I noticed that I would pass a lot of blood when going to the toilet. It would happen on and off and I’d just pass it off even though I knew that it wasn’t right.

September 9th  2011 was the day that my Crohn’s disease began to flare. I was in Manchester at the time and I remember feeling like my stomach was going to burst open. I was suffering with extreme cramps, fever and diarrhea. In the coming months my weight began to drop rapidly because I couldn’t eat without getting cramps and diarrhea. I’m a happy, bubbly person and people thought that I was suffering from depression and an eating disorder. I realise now that I was slowly dying and I was letting it happen but that’s how bad my fear of doctors was.

In December 2011 people were saying that I looked like a skeleton. I could see the shock on people’s faces when they would look at me and see a different person to the Clara that they all knew. I developed a perianal abscess and I was forced to go to the doctor because I couldn’t pass anything from my bowel without looking like someone you see having a baby in a film. It was dramatic to say the least! I went to A&E on the 23rd of December 2011 and I was admitted immediately and prepped for emergency surgery. The surgeons drained 100ml of poison from the abscess and I was told that I would have died on Christmas Day if I had left it any longer. The poison would have entered into my blood stream and killed me. I got out of hospital on Christmas Day and instead of things getting better, they got worse. I had dressings changed every day in the open wound from surgery for 3 months. The dressings were one of the most painful things I’ve ever gone through. I was still trying to fool doctors when I would go to clinic appointments in the hospital wearing a full face of makeup and a big smile on my face. My mam would plead with me to let them see the girl that she saw every day.

Me in 2016 on the left and April 2012 on the right
In March 2012, my weight had dropped from 56 to 47 kilos. I’m 5ft 7 so I was tremendously underweight. I developed a limp and when I felt a large lump in my stomach I knew it was time to seek help. I was rushed to Beaumont hospital and hooked up to an ECG machine because of how high my heart rate was and sent for numerous scans which showed a mass the size of a melon in my psoas muscle. It was blocking all of my organs. The surgeon told me that they had three options for me and there was no guarantee that any of them would be successful. I asked him if I would live and he said, “I don’t know". It was then that I realised I was at deaths door and I received my last rites. I had a drain fitted internally for two weeks and it drained out the poison from the abscess in my abdomen. The CRP levels (which is the marker of inflammation) in my blood were over 600, normal is between 2-10. I also had Strep G and E-Coli in my blood. After three weeks I was discharged but after a few days, I knew that the mass was back. I remember packing a suitcase at home because I knew that I was going to be in hospital for a very long time and part of me didn’t know if I would ever come back home again.

The next day, I was admitted and brought straight to the ward where I was prepared for surgery. There was no more time to waste. I was put on a feed called TPN and marked up for two stoma bags on the morning of major surgery. I remember being brought down to theatre not knowing what my body would be like when I woke up. After seven hours, I was brought back up to the ICU unit. It’s all a blur because I was on a morphine pump but I remember wires and tubes were coming out of my body everywhere and that the surgeon told me that I had no stoma bag. I struggled for weeks after the major surgery, which included a bowel resection. I had some blood transfusions because of cell levels in my blood and because of what I had lost during surgery. It would take me 15 minutes to sit up and I was unable to eat, wash or walk. My mam was brilliant but my dad passed away when I was 15 so it was hard that he wasn’t around as a support for my mam, brother and me.

After suffering a major reaction to medication, I thought it was the end. I knew that I was going to have to fight to survive. I was vomiting non-stop and couldn’t hold anything in my bowel. In the photo I’ve included I had half of a biscuit in my hand and went straight back up to the ward and vomited uncontrollably. My hair had started to fall out and my weight continued to drop. I was 6 and a half stone and wasn’t able to walk properly. I was always significantly worse at night when there wasn’t enough staff to look after the amount of people that needed help so I used to pray that I’d make it through the night until my mam would come back the next day. Slowly, I started eating some toast and seeing how my stomach would react and just when I thought that things were improving I got bad news about my white blood cells. A surgeon came around and mentioned leukemia and having to open me back up. The next day my white cells had increased slightly. After that setback, I started to improve daily and they felt that they could send me home after being in for a month.

It didn’t last as I was back in after a few days. My temperature spiked and it was back up to 39.5. I was admitted and put into isolation as I had contracted the hospital bug Clostridium Difficile. I felt more myself this time and knew that with the right medicine I could fight because I was building my strength back up. My temperature continued to spike and the surgeons mentioned opening me up again because they couldn’t understand what was wrong. I started eating little bits even if it made me feel sick and slowly but surely I began to build up my strength. I was able to wear makeup for the first time in months and I felt more confident in myself. Day by day I improved and after three weeks I knew that I was getting better. I had an appetite, which was something that I hadn’t had in a year.


After having an MRI scan on May 25th, 2012, my surgeon told me that I’d won the battle and could go home. I was diagnosed just before my 19th birthday in June 2012 with Crohn's Disease. Since then, I’ve had four surgeries because they found that I had a fistula but I had my final surgery in May 2014 and I haven’t been admitted to hospital since. Soon after I was released, I developed alopecia areata, which is a type of hair loss but my hair eventually grew back where the bald patches were. I have to take autoimmune suppressants every day and have days where I struggle with the symptoms of IBD such as nausea, diarrhea, cramps and loss of appetite. I suffer from anxiety and fatigue too. Living with Crohn’s can be extremely challenging but I feel blessed to be alive. I also no longer have my fear of going to the doctor!! IBD awareness is so important today because there are so many people suffering from IBD symptoms and they have no idea where to seek help. For more information on Inflammatory Bowel Disease please visit http://www.iscc.ie

Clara