I was diagnosed with Crohn’s disease in June 2008 at the age of 19. Like most, my diagnosis did not happen overnight, and I required a whole host of tests to zone in on what was causing my discomfort, these included more blood tests then I can count, a CT scan, an MRI scan, a barium meal examination and the wonderfully exciting colonoscopy… scratch that, two colonoscopies.
The outcomes of the above revealed significant scarring in my small intestine, elevated white blood cell activity (mostly attacking myself), and some extremely inflamed bowels as a result. All signs pointed to Crohn’s disease!
As with most newly diagnosed Crohn’s patients, I was started on old faithful: Prednisolone, (aka steroids) and was on and off of these for the next six months. Although I was lucky in some respects that I did not get some of the more severe side effects, I found that each time I was weaned off them, my cramping and constipation returned almost immediately, sending me straight back to hospital. This led to the decision for me to move on to the more hardcore immunosuppressant drug: Mercaptopurine.
Now, at this point, it is worth mentioning a few things: I was 19 years old, in my first year of University, and most importantly, I had no idea what, or how serious Crohn’s disease was. In 20/20 hindsight, I made two key mistakes:
- Mistake 1: The morning I was first rushed into A&E was the morning after approximately four nights out in a row. These had been spent drinking copious amounts of alcohol and consuming very questionable bacon baguettes from a Plymouth based establishment that will remain unnamed.
- Mistake 2: I believed that prednisolone had actually cured my Crohn’s disease, rather than simply masking my symptoms. Thus, celebrating the day after I had finished my final course of steroids by… yep, you guessed it, going out on the lash again, landed me straight back in hospital.
After the third or fourth time of finding myself in the Gastro wing of the hospital (not all because of alcohol), I started to put the pieces together and came to the realisation that this was not going to go away. I therefore changed tactics! I started reading everything I could find on Crohn’s disease, and made some pretty drastic life changes. I cut out alcohol, I simplified my diet, opting for low fibre/low residue foods, and made the conscious decision to start listening to my body. These changes, coupled with a positive response to Mercaptopurine and the unwavering support of my family and close friends resulted in a period of around twelve months in remission through medication, and a further twelve months remission controlled by diet and wellbeing.
This brings us into 2010. I was now starting my final year of University; my stress levels were at an all-time high, my concentration levels were at an all-time low, and I simply could not engage in my studies. I had no motivation! In hindsight, this was the warning sign I had overlooked; I now know that my body had been focusing all of its efforts elsewhere to try and fight the approaching Crohn’s onslaught.
Unsurprisingly a few weeks later, I exploded out of remission hard. A stricture had slowly been developing in my small bowel, and overnight, something had got stuck in the narrowed tract and caused a blockage. To this day I have never known pain like it!
After a week in hospital, consuming only bags of IV fluid and a crap tone of painkillers, I regained some control of my body and was placed on an extremely limited diet of mostly white fish, chicken, mashed potatoes and ice cream (Win!). By the November of 2010, my stricture had gotten considerably worse, and was now so tight that I was getting regular blockages. This resulted in the need for a liquid diet (five Ensure milkshakes a day) until a solution was reached.
After two months of this, my weight had plummeted from a plump ten and a half stone to well under nine. The change was so dramatic that relatives, whom I had not seen for some years failed to recognise me at a family event… heck, I failed to recognise my skeletal self in the damn mirror. Finally, in the February of 2011, after being rushed into hospital for yet another blockage (on a liquid diet… how is this even possible?) I was taken down for emergency surgery, to remove 10cm of my small intestine and my Terminal Ileum (the join of the small and large intestine).
Having not been a key hole surgery, the recovery was long. My stomach muscles that were once toned were now held together by staples. But there was a silver lining; all the bad bits of Crohn’s infected bowel had been cut out, and the follow up tests showed no signs of Crohn’s disease markers in my blood. I had literally removed Crohn’s disease from my body… for now at least, and I entered my second period of remission lasting a whopping 6 years.
We re-join this story in the May of 2017; I am now living in Essex, away from the family and support networks of the past, but with the same beautiful partner, who is now my beautiful wife, and who is 6 months pregnant with our first child… Seems like the perfect time for a Crohn’s flare up, don’t ya think!!!
This time, it did not take the typical form I was used to, instead, I experienced fever, fatigue, pain when sitting and severe pain when pooping. This new hell revealed itself the following month after an A&E trip for a suspected perianal abscess. I was diagnosed on the spot by my consultant with a Perianal Fistula, a new evolution in my Crohn’s disease journey.
I underwent surgery the very next day to fix the fistula, with surgeons placing a seton (a band of string) through the passage of the fistula to allow the wound to drain and heal. Unfortunately, it did not go quite as planned, and after a further infection, I was admitted for a second surgery just five weeks later. This time, the seton from my first surgery was removed and the Fistula tract was laid open, leaving a deep wound that required daily packing, similar to that of an abscess.
Despite the inappropriate timing of my relapse, the one thing I was thankful for was that the gastro ward I was in, was directly below the maternity ward. I was therefore able to walk (gingerly), up one flight of stairs to be with my wife during her prenatal appointments. As you can imagine, these were not the glowing pregnancy stories we were hoping to share, but the good news was that I was back on my feet; just in time for the arrival of our son.
The next few months were very hard as I immersed myself into fatherhood with a fresh wound, literally on the edge of my arse. Moving around was hard, but sitting down was harder, and I had to use an inflatable ring to ease the pressure on the open wound. Momentarily, being the super involved father I had wanted to be seemed an unrealistic vision, but this quickly dissipated when I gazed into my tiny son’s eyes, and felt his tiny hand hold my finger. Yes, I needed some help along the way, but I was there, with him, and that was enough for me! And hey, what’s a super dad without his super inflatable donut ring of destiny anyway!
For now, I was out of the woods in terms of the fistula situation, but I could feel my usual Crohn’s symptoms starting to reappear: fatigue, constipation and the unmistakable abdominal cramping. I was subsequently placed back on to my old friend Prednisolone, with my blood tests revealing that my Crohn’s disease was now back in full swing.
As time had moved on a bit since I had last been on drugs, and I had since become an OG in the world of Crohn’s disease, I was given the option to try a new biological, immunosuppressant drug called Humira (Adalimumab). This was a powerful drug that was also known to help both heal and prevent fistulas; a win win in my current situation. Despite my positivity, this drug came with its own quirks, which I will look to cover in future posts, but most notably, it required me to inject myself once every two weeks. Although initially apprehensive, the small pain of the syringe was vastly outweighed by the removal of the symptoms caused by my Crohn’s disease and I descended into another period of medication induced remission.
Fast forward nearly two years, and we reach the end of the story so far. My immune system, which under the Crohn’s definition is deemed to be faulty, is actually pretty good, as it has managed to develop antibodies to fight off the very drug designed to help it. But it’s not all bad; this change has prompted me to come off the drug altogether, and all other tests have come back clean… no sign of the Crohn’s. Today (January 2020), I await a final colonoscopy to get the full all clear, but it looks like my new year is off to a good start. I shall enjoy it until the next chapter of this story presents itself.