My story

About ten years ago at the age of 22 years I started to notice a horrible hot poker pain in the centre of my torso. This pain would come and go so I didn’t bother to see a doctor straight away, it wasn’t until the symptoms got far worse that I realized something was not right. I had diarrhoea, blood in my stools, pain in my joints, stomach and sickness to name but a few of the classic symptoms. It took a year for me diagnosed with Colitis with indeterminate Crohns. This was discovered when I was emitted to hospital with malnutrition, fatigue and extreme pain. The hospital carried out a colonoscopy and diagnose the Colitis, they said it was not curable but manageable with medication, great I thought problem solved, but how wrong was I.
I was put on Prednisolone straight away, quite a high dose which did help immensely. There were some other drugs too, maintenance drugs like, Pentasa and Azathioprine. The steroids worked well but to my dismay they were only a short-term fix, once I worked my way for eight steroids a day to one then none the symptoms started to come back. As you cannot stay on steroids indefinably I ended up with many flare-ups, this resulted in me being emitted to hospital every few months. The hospital would give you IV steroids or an antibiotic depending on the symptoms.
As the years went on my final drug to try before looking in surgical options was Remicade. This was an infusion that you had at the hospital every eight weeks. It is an expensive treatment so was left as a last resort really, but again my body seemed to get used to the drug and slowly but surely would begin to stop working, the flare-ups were getting worse and worse. Before I had to consider the option of surgery and new drug was offered to me called Hurmia. I liked this drug because it was a self-injecting pen, so no more visits to the hospital. It had to be kept in the fridge and was delivered to my house, I had to self-inject this once a week on the same day, either in the top of my leg or in the “belly” area. The treatment of Hurmia lasted for about a year before it stopped working, it was now that my body gave me no real choice but to go for surgery.

In 2012 it was decided that a temporary ileostomy might be the best course of action. The idea was to give the large bowel that had the colitis a rest for one year by bypassing it. The surgery in its self wasn’t too bad, the worst part is the recovery when you first wake up. I was on a rapid recovery programme which basically means they boot you out of bed a day after surgery, and try to get you eating. It sounds a little harsh but to be honest is the best option. The quicker you are up and walking around, eating etc. the quicker you will recover, it aids the healing process.

I was in hospital for about four days, but took about three weeks for everything to feel “normal” again. I had the temporary ileostomy for about one year, but to be honest to made little difference. The bowel even when not in use refused to heal, and still acted as if it was still in use. There were more visits to hospital with infections, flare-ups and malnutrition, the line had to be drawn somewhere, it was at this point that the large colon was to be removed and later down the line the rectum (don’t need it now anyway).

Since having the permanent ileostomy I have enjoyed symptom free health from the Crohns/Colitis for about two years. It wasn’t until 2014 where I started to have some issues around the stoma itself. There were some nasty surface level fistula tunnels, these where very painful and nightmare to live with as I had to keep changing the pouch, sometimes two or three times a day. This went on for a good while before a camera test put into the stoma confirmed I had Crohns in the small bowel, here we go again I thought!!

I now have to have eight weekly infusions of Infliximab, but it has worked very well in healing the fistulas and suppressing the symptoms. It only takes 1 hour for the infusion at the hospital and is side effect free for me, just makes you a little tried at the end of the day.

Hopefully for me this is it now, we can only wait and see how things work out in time and as I get older.