Every IBD story is different. Here’s mine.

Diagnosis

I was born in 1988 weighing a healthy 8 1/2 pounds and I lived a relatively normal life up until the age of 11. I  say  relatively because I was always underweight and I had issues with appetite but until that point it was nothing too concerning.

At the age of 11 my appetite worsened and this was having a more noticeable effect on my weight. I also started to get excruciatingly painful stomach pains and at times I felt extremely lethargic. I remember being in so much pain all I wanted to do was just lie on the floor in a curled up ball and block the rest of the world out.

Being ‘attacked’ by Suzie the rabbit around the time of my diagnosis

Naturally my parents took me to the Doctors and after many invasive tests by a thankfully determined General Practitioner I was eventually diagnosed with Crohn’s Disease. Diagnosing Crohn’s disease is very complex as symptoms are wide ranging and vary from patient to patient. In my case, I did not have bloody diarrhea which is normally the main symptom associated Inflammatory Bowel Disease. I imagine it was also hard to diagnose as I was so young and unable to effectively communicate my symptoms.

Following my diagnosis I was prescribed a course of a steroid called Budesonide which helped bring my Crohn’s into remission. Unfortunately this remission would not last, and I spent 3 years back and forth to a pediatric gastroenterologist trying various medications. We eventually settled on a daily 75mg dose of Azathioprine which I still take to this day.

Teenage Years

At 14 I experienced several ‘uncomfortable’ bloating episodes with my stomach and after various tests including a colonoscopy, barium meal and MRI scan, it was identified that I had a narrow section within my small intestine that needed to be removed. Due to the damage caused by Crohn’s disease, my small intestine had scarred in several places and this was making it hard for digested food to pass through. Towards the start of the summer holidays I was pulled out of school as there had been a cancellation at hospital, and the following day I had 20cm of my small intestine removed. A week later I was out of hospital and on the road to recovery. I was left with a 2-3 inch vertical scar that went round past my bellybutton. Overtime this scar has decreased in size and you would really have to know it was there to be able to see it. Young skin is great, right?

Playing a travel guitar in Cyprus. I was really struggling to eat at this point (hence how skinny I was) and upon returning home it became apparent that my Crohn’s was flaring up.

Following my operation I went through a long period of remission and I enjoyed a relatively normally life. To be honest, apart from taking daily medication, I was able to forget I had Crohn’s disease. I was incredibly lucky.

At 19 the decision was made to attempt to reduce my Azathioprine from 75mg to 50mg and unfortunately this lead to a flare up on a family holiday to Cyprus. A course of steroids reduced the inflammation and restoring my Azathioprine intake enabled another period of remission. Despite being in remission I began to experience uncomfortable bloating episodes similar to those I experienced at 14. With the aim of avoiding further surgery my consultant at the time prescribed a 3 month entirely liquid diet. This was an incredibly difficult time but it gave my intestines time to ‘rest-up’ and I was able to experience another long period of remission.

The present

This period of remission lasted until July 2015. I was a few days into a 2 week holiday travelling through Spain, Morocco and Portugal when I took ill. It always seems to happen on holiday. I arrived with the tour in Granada and immediately started to feel very sick and lethargic. I took a couple days out from activities and rested up in my hotel hoping that it would pass but unfortunately it didn’t. With the tour leaving for Morocco the following day, I took the hard decision to cancel the rest of my holiday and return home. At this point in time I did not know what was wrong with me and I didn’t fancy being poorly in Morocco.

Upon returning home I attended my twice yearly consultation with my gastroenterologist, and following a Calprotectin test, we identified that I had active inflammation despite the lack of symptoms. I had another colonoscopy and MRI scan and we discovered that I had widespread pockets of inflammation throughout my small intestine. It was likely that there had been Crohn’s activity for sometime and I was completely unaware.

My consultant did not believe surgery was an option, or necessary at this point and asked that I go away and research Infliximab and return to him in a few weeks to discuss whether this medication sounded like something I would like to try. I will save the details of Infliximab for another blog post, but I will say that reading about this medication online was terrifying and I learnt a lot from this experience. The idea of being tied to an infusion every 8 weeks after only taking tablets every day up until that point was a really scary prospect. This is really when the seriousness of my condition hit home, it was like being diagnosed for the second time.

During this research period I became very stressed about my future and I started to experience the stomach pains of a tell tale Crohn’s flare up. I’ll never know whether the stress and the symptom development were related but I suspect they were. This resulted in another course of steroids and another missed holiday.

Getting set up for my Inflectra infusion at the Royal Victoria Infirmary, Newcastle-upon-Tyne.

In December I took the decision to start Inflectra, a new biosimilar version of Infliximab. (Infliximab is no longer available to new patients on the NHS due to its cost). 4 Infusions later and we are up to date with my IBD story. I’m pleased to say Calprotectin scores have improved after starting Inflecta but they are still not normal. At this point in time I’m not entirely sure what to expect. This will likely be a conversation I will have with my consultant in a few months time.

I feel like I’m entering a new stage in my IBD journey and I’m taking some time to settle in. This new medication kick started a lot of worry about the future, mainly along the lines of whether I’ll need further surgery, whether surgery is in fact an option and how long this medication will work for. Despite these worries, I’m trying my best to enjoy the ‘now’. I’ll tackle the future when it happens.

I’m aware this post is very long and I’ve moved quickly through a lot of topics. I hope to delve more into some areas in more detail in future blog posts. If there are any areas you’d like to hear more about please let me know in the comments below.