Living with Chron's & Colitis - Abbie's Story
As some of you are aware I suffer with a bowel disease called Crohn's & Colitis. I was diagnosed at the age of 13. My symptoms started in 2011 around summer time. I was losing weight very rapidly, I couldn’t keep anything in, I lost a lot of blood, I had no energy, I had the worst abdominal pain it felt like someone was constantly punching my stomach. I had no idea what was wrong with me I was just so scared.
The months went on and it was now September, I was still suffering and my parents had no idea what was wrong so I was asked to go and have a blood test. I absolutely hated needles at the time so it was very traumatic trying to get this needle in my arm. I then went home and a few hours later my mum got a phone call from the hospital and they said “Your daughter is seriously ill she needs to go to hospital NOW!”. Whilst this phone call was happening, I remember lying on the sofa crying because I was in so much pain. My mum said we had to pack my bag and go to hospital. I was then taken into Royal Berkshire hospital in reading and I remember being so scared I had no idea what was going on. I was on blood transfusions and IV drips because I was so poorly and lost a lot of blood. My dad stayed with me in the hospital and we were getting woken up every 15 mins just so they could observe me. The next day I remember my mum & dad were outside the room talking to the doctors and then the next breath I was told I was going to Great Ormond Street Hospital in London.
I then left Royal Berks to go home and pack another bag. At this point I still had no idea what was wrong I just remember feeling confused. We then made our way up to GOSH, I got taken to an isolation ward. I had my own room and my mum stayed with me. I was in an out of consciousness, they then put more needles in me and as you can imagine I was screaming my head off. The doctors told my family I only had 20% chance to live so they were very very frightened, upset, confused and scared. The next day I was told I was having a colonoscopy/endoscopy, I then had to drink this horrible drink to clear me out and to feel empty inside basically. Then the day after that I went to have this procedure done and whilst I was put to sleep, they told my parents they weren’t ruling out cancer.
As I came out of this procedure, I was totally out of it, then I met a bowel disease specialist. He told me I had Crohn’s & Colitis. We were all so confused and wondering what this illness was. All I remember him saying he was going to save my life and in fact he did! I was at GOSH for a week then I was finally allowed to come home, I remember feeling so excited and my dad said he would get me a gift as I had been so brave the last couple weeks. Obviously, I took him up on that offer! I started to take all this medication and I remember thinking what the hell is all this it was all so new to me and my family. We had done lots of research into it and started to understand what the illness was and how to manage it. Unfortunately, there is currently no cure for this horrible disease.
As the years went on, I was constantly on different medications as my body just didn’t react to the drugs that they gave me. I was still going to dance school at this point, eventually I had to give up my dancing all together as I got really poorly from the long hours and my health comes first. I was really lost for a while as I wasn’t sure what to do, I tried beauty college but I didn’t enjoy that and then I started to work for my dad.
I was put on a medication called Ukestkinimab (Stelara) which was basically the only medication I hadn’t tried and it’s known to be a strong medication. I have been on this for 4/5 years but at the end of last year I had noticed that my medication wasn’t working properly, I was constantly tired, getting loads of symptoms that I shouldn’t have been getting and I would always end up going home early from nights out as my stomach would be playing up.
In February this year I always thought about having a stoma bag. I always saw things online and how loads of people said it changed their lives and they feel so much better. I discussed this with my Gastro Team in London and they said this is an option for me. They had to do some investigating first to see where all the inflammation was coming from. Turns out it’s in the bottom of my Colon. I then met with the surgeon a month later and he told me about the procedure. Over the next few months, I did a load of tests just so they were certain I could have this operation. As you can imagine the pain, I was in was unbearable so I just wanted the process to speed up. I met with the surgeon in September and I told him that I’ve tried everything he asked, he then said ok let’s do this operation. He explained the risks, how long the op would be and the mental side of it. The next couple days I received a phone call from the hospital and they told me my surgery date which was in 2 weeks. I was feeling so scared but also glad it was getting done at the same time.
The morning of my surgery I felt so anxious, I was crying in the car and I didn’t want the operation as I just felt so scared. I got to the hospital and they called me to go up. I was first on the list to go down which I was happy about until my surgery was delayed as they couldn’t find me a bed in the ward so I ended up waiting for 7 hours to go down to theatre. I remember waking up from surgery and looking down at my stomach, it felt really strange at first and I was confused. The next day I woke up and I saw the stoma nurses, they showed me how to change my bag, empty it, clean it and gave me a pack of stuff to take. I left hospital after 3 days and was glad to be home.
The day after I came home, I started to feel really sick and nauseous, my stomach was really sore and I couldn’t keep anything down I was so weak. My parents called the paramedics on the early hours of Sunday morning and they gave me an anti-sickness jab. It then stopped for a bit but I started to feel really rough again. On the Wednesday the pain was unbearable I couldn’t even move so I was taken to A&E, put on a load of painkillers to subside the pain. I went down for a CT scan and turns out I had a small bowel obstruction/blockage so I wasn’t going home. I was taken to the surgical assessment unit in royal berks and the surgeon had to put his finger inside my stoma to release it and unblock my bowel. He put a tube in my stoma and I felt so much better the pain wasn’t there anymore and I didn’t feel sick. I was on a catheter for 2 days I felt so much better and had a lot more energy. I came home and I could finally eat something solid!
Now I am home the reality has started to kick in and mentally it’s made me a feel a bit rubbish. I look down at my body sometimes and feel embarrassed but I know I shouldn’t feel like that but I just do. I am also looking at the positives as already I’m starting to notice a difference. I’m not rushing to the toilet; I have no pains in my tummy and I feel more energised. I have really battled with my mental health with this illness, I suffer with anxiety. It used to be really bad but I’ve had lots of help and I know how to keep it under control.
I wanted to share my story on social media as there needs to be more awareness raised about bowel diseases. I wouldn’t have gotten through it without my family and 2 best friends (Elle & Megan). You have all been so supportive through my journey and I wouldn’t have gotten through it without you all ❤️
#noteverydisabilityisvisible
Love Abbie x
If you would like to find out more head to the Crohn's & Colitis UK or Colostomy UK charity pages and find out what they do and what support they offer.