My name is Amy & I am 30 years old. Some of you may know me as ‘IBDWarriorPrincess’ on social media.
In this blog, I am going to share my story on my Crohn’s diagnosis and give you some insight into what it was like having Crohn’s Disease as a child (or what I can remember of it any way!).
Struggling with Malnutrition as a Toddler
I had Malnutrition as a toddler, which is when your body doesn’t have the right nutrients. Mine stemmed from being a very picky eater, and I experienced weight loss & had loose stools and diarrhoea over and over again. I never had the best appetite when I was young anyway, and this was something that would become increasingly apparent as I lost weight, which at the time I didn’t realise was a symptom of Crohn’s Disease. Other symptoms I experienced included tiredness, stomach aches and irritability. I also seemed to be prone to picking up various different illnesses more frequently than others from being at school. To say the least, my immune system wasn’t great.
Receiving a Diagnosis of Crohn’s Disease
Because of how severe & debilitating my symptoms were, I missed a lot of school because I would be at the hospital receiving treatment or having my symptoms investigated further. I would say it took a few years before I was diagnosed with Crohn’s. At the time, I was the third youngest in the UK to be diagnosed with Crohn’s and I was seen and monitored by two different hospitals.
Trauma from Hospital Experiences
A lot of the memories that I have from my hospital experiences as a child, I have tried to block out of my memory. It was a very dark time in my life and led to symptoms of PTSD (Post Traumatic Stress Disorder) that I still experience as an adult. Although I did have some doctors and nurses who were understanding and caring, I did meet some that made my hospital experience much worse than it should have been. One memory that I have in particular was when I refused to get an enemy prior to a colonoscopy and I was held down by those around me. I also remember how much agony I would be in when I would go to the toilet because of the inflammation and narrowing I experienced in my intestine and near my rectum.
It was a time in my life where all I wanted to do was what my friends were doing. Even to this day I feel like I missed out on a lot, but I do know now that I can’t get that time back – so I do my best to cope with accepting it and I do as much as I can with what I have now.
Some other signs of IBD
Aside from the symptoms I have already discussed, there are a host of other symptoms that I experienced as part of having IBD, these included:
- Bruising easily
- Feeling nauseous
- Becoming cold easily and struggling to get/stay warm
- Mouth ulcers and canker sores
- Sores around anus
- Blood around anus and in stools
- Feeling uncomfortably full after eating small amounts of food
- Aching joints that limits movement
- Toilet urgency
- Feeling like you can’t empty your bowels properly
- Constipation (which can quickly change to diarrhoea)
- Night sweats
- Sleeping troubles
If you have IBD, you will not necessarily experience some/all of these symptoms. However, if you experience one or more of these symptoms, the best thing to do is to reach out to your GP as soon as you can so that you can put your mind at ease and/or move forward with proper treatment.
Getting My Second Diagnosis
So, I was diagnosed with Crohn’s of the small bowel (small intestine) at 7 years old and tried taking many different medications which never really seemed to help in the long term. Typically, Crohn’s Disease is found in the small bowel but it can actually occur anywhere in the digestive system from the mouth to the anus. There can also be extra intestinal manifestations of Crohn’s (signs & symptoms outside the digestive system).
I became dependent on steroids within the first few years of my Crohn’s diagnosis, and it got to a point where even trying to taper down to 1mg of steroids could throw me back into a full blown flareup. I also tried medications such as Mesalazine and went on liquid diets for weeks on end in the hope that giving my bowels some rest would help my symptoms, but unfortunately this wasn’t successful. At age 17, I moved up to the adult clinic from the children’s clinic and I had investigations such as an endoscopy, colonoscopy and small bowel MRI for the first time in years. Tests revealed that my Crohn’s was actually in my large bowel (my colon, rectum and anus) which is why treatment had been so ineffective up to that point, as it was targeting the wrong area.
The Two Years Before My Surgery
Leading up to the decision being made that I needed surgery, I had started steroids again as well as Azathioprine (an immunosuppressant), finally moving onto an infusion treatment of Infliximab (also known as Remicade). I stopped Azathioprine because my liver became repeatedly affected by it.
I usually had Infliximab every 6 – 8 weeks. Infliximab is a type of TNF (tumor necrosis factor) blocker, usually used to treat moderate to severe Crohn’s. Initially, it was intended as a chemotherapy drug, but it wasn’t found to be effective. When I had my routine scans after being on Infliximab for a year, the results showed that my disease was more severe and unfortunately the treatment hadn’t worked. It was after this that it was decided that the best thing for me was to have surgery. A resection was initially mentioned but then at my surgical appointment, it was explained to me that this wasn’t an option due to the spread and complexity of my disease and that a permanent ileostomy would be my main/only option if I wanted to feel better & live a full life.
Stacey Stoma was created on 9th August 2011, when I was 19. I am now 30 and regularly share both the ups and downs of stoma life over on my Instagram.
It has been a long journey, and I hope that reading my story helps you to feel less alone in your experience.
Amy & Stacey Stoma