I’m Jenny, I’m 22 years old and I’m from bury, Lancashire.
My Crohn’s journey started in October 2001 when I was 11. I began to violently vomit and was rushing to the loo around 10-15 times a day. Being 11, and loving my food, my parents and I put it down to food poisoning and decided to let it run it’s course.
The sickness stopped, but two weeks later I was still rushing to the toilet and was exhausted. I hadn’t told mum I still wasn’t well, though she kept asking me. I had just started high school and the thought of being socially extradited because no one knew who I was, was enough for me to force myself to attend.
It didn’t take mum and dad long to notice that something wasn’t right i had lost almost a stone. I was already quite a thin child so this was quite noticeable and mum got me an emergency appointment with our GP.
She took one look at me and told me that I was far too poorly for her to deal with and referred me to a consultant paediatrician. He and his team were amazing and spent 5 months trying to rule out various illnesses, but self admittedly he was not a specialist in gastroenterology and referred me to Alderhey in Liverpool in the February 2002.
This is where I met my consultant, the late Dave Casson. A wonderful, energetic funny man who spoke to me as the patient and not my parents. I had a barium X-ray and colonoscopy and on the 11th march 2002 I was diagnosed with Crohns disease, and was admitted 2 days later put on Azathioprine and an 8 week NG feed.
It certainly wasn’t an easy time, the feed was heavy on my stomach and I was frequently sick (not nice when the tube is taped to your face), I started to get the abdominal pain that would have me curled up in a ball unable to breathe, after 3 weeks in hospital I had learnt to remove the tube and put it back in correctly (there was NO way I was going to school with it in). Being unable to eat for so long was horrible and I told my consultant I would never ever do the feed again (little did I know).
Once the 8 weeks were up I began to slowly reintroduce food groups per the next 3-4 weeks. I was still not well and now also had the joy of pain and sickness to add to the endless diahorrea.
I spent the next two years trying every treatment that was available to me (biologics were available but not FDA approved for paediatrics) I tried steroids and pentasa which didn’t touch it. I had a period of 14 months where I got a reprieve finally! I was diagnosed with helicobacter pylori and the treatment included metronidazole, which amazingly treated my crohns.
I gained weight and lived a pretty much normal crohns free life. Unfortunately all good things come to an end and the antibiotic stopped working. We tried swapping to ciprofloxacin to no avail. This was Christmas 2003. 2004 was not my year. I was admitted 3 times, I lost more weight than I had gained and hit a new unhealthy low of 4 and a half stone (I’m only 5ft 1 but I was still very thin). I was weak, tired constantly and very depressed. Mum and dad would try and get me to interact but I didn’t see the point of getting out of bed. The pain would have me crying in a ball and on several occasions caused me to faint.
I was now on the toilet 30-35 times a day and sitting on the toilet with a bucket on my lap throwing up. I was very low depressed and miserable.
We tried steroids again, pentasa again, antibiotics and even a trial treatment (the MAP bug treatment) that suggests that crohns is caused by tuberculosis of the gut, I begged my consultant to try it for 4 weeks before he put me back on a feed. It had no positive effect. This time my consultant played hard ball and we had a chat. He said that he had done as I asked within reason and tried me on the various treatments but it had Gone too far now and it was time to start the NG feed again. I was devastated but knew he was right. Unfortunately I was placed on it over the Christmas and New Year period of 2004. “the one time of year that is all about food!”
I wasn’t getting any better with the feed and hadn’t gained even half a pound, in January 2005 my consultant decided that it was a good idea to scope me and see how bad things had got. On the 28th January 2005 I went in for my colonoscopy (they do them under GA in most children’s hospitals). I went down at 9.30am and 7 hours later woke up in recovery in horrendous pain! Mum and dad were crying by my bedside, an anaesthetist was sat behind me monitoring me and the pain team where at the bottom of my bed trying to get control of the pain level. I asked mum what had happened but she was too upset to talk, dad couldn’t make eye contact with me and I was in and out of consciousness.
Once I had been transferred to HDU and the pain was almost in control my surgeon (yes surgeon! Who I’d never met!) and my consultant came to see me. It turned out that during the colonoscopy the scope had perforated my sigmoid colon and there was no option but to open me up and tell mum and dad. My colon was necrosed and as they removed it, it perforated in 6 more places. I was lucky to be alive.
Mum and dad had to give permission for them to remove the Colon and give me a stoma. An easy decision in that I was going to die otherwise but the most horrendous of situations, i developed peritonitis and because I was so weak they were told that i would be lucky to survive the next 24 hours.
I was told that i had an ileostomy and that my surgeon was 98% sure it was irreversible. So I would be left permanently with a bag. It was a hell of a lot for me to adjust to, but with the support of my parents and two younger sisters, I got there and adapted quickly.
I was in pain due to the surgery, but it was nothing compared to the crohns pain! I had my life back and I was going to make the most of it. Even small things like walking to school, sitting through an exam or going out with my friends without running to the toilet was a bonus.
Despite my surgeons apprehensions about the reversal due to scar tissue and mild inflammation, I went for reversal surgery a year and a half later due to my diagnosis I couldn’t have a j-pouch so I had a straight rejoin.
The surgery was much easier than the original to deal with physically but Mentally it wasn’t so easy.
- Had I really done the right thing?
- I was happy with my stoma, actually learnt to love it in fact!!!.
- What if I had rocked the boat?
6 years on and I’ve avoided more surgery so far. I got my A levels and my degree and lived the typical student lifestyle. The crohns is still there and recently I started on humira.
If I get really poorly again… What’s the worst that can happen? I know I can live quite happily with a stoma, that little rose bud bit of flesh that society pulls their face at saved my life.
I’m proud to be an ostomate (or ex), I’ve met some amazingly strong and inspirational people and I truly believe my experiences have made me a better, well rounded person.