So as I write this it is actually day three of Crohn’s and Colitis awareness week but I have back dated it to show it was published on the first of December; there is a good reason for this and it is because writing about my pre diagnosis is hard. Hard for two reasons :
- I have blocked a hell of my preteen and teen years out
- I get anxiety attacks when I think back to it
They are the reasons behind why I haven’t really got anything on my blog about before my surgeries so I am using the fact it is an awareness week to do a blog post a day (even though two will be backdated) about what it was like for me living with Ulcerative Colitis.
So when it all started I was in year six in primary school and I first started to get sick; the tummy cramps were awful and sometimes it felt like gravel was being thrown around inside my belly. I didn’t know what was wrong and my mam took me to the GP’s, they took a urine sample and presumed it was a kidney infection. One of the worst memories I have of having Ulcerative Colitis is going back to the same doctor and being asked to leave the room whilst he told my mam that I was probably faking it to get out of school. I loved school and it was the first time but sadly not the last that having an invisible illness would be made out to be imaginary. Most people that lived in or around Northallerton would do anything they could not to be seen by this doctor who has since retired as he didn’t seem to care or actually do his job properly.
I suffered badly with constipation and my stomach would always be tender and slightly distended this along with the standard moon face and bloating of steroid use started me down a long a difficult road of having a general eating disorder. Most people with Ulcerative Colitis present diarrhoea symptoms and that wasn’t something I experienced till I had my jpouch surgery at 21. I used to suffer with frequent overflow though which was horrific knowing that I had essentially pooed myself and was extremely embarrassing.
I am extremely lucky to have parents that never gave up on the fact I was actually poorly; I guess the hours I would spend sat on the toilet crying trying pass a movement was definitely an indicator that I was sick and not making it up. My dad said they would find me at all hours of the night asleep on the toilet or wake up to me sobbing. The chronic constipation was a killer but doctors now thought I had IBS and I was on so many laxatives to the point that when it came to the lead up to my surgeries they didn’t give me them as I would go into a state of panic. I was given a temporary NG tube once just to give me kleenprep and movicol in the children’s ward just because I panicked and wouldn’t drink it.
One year around New Years Eve was when we started noticing the blood after I had passed a bowel movement and my mam took me down to A&E and they asked her if it was just my period which started and she turned round and said something along the lines of ‘I would be able to differentiate between a period and something else’. I was given a sanitary pad to see if it was a period or not, I specifically remember my mam saying try and strain see if blood would come out and it would have poo in it which they would then be able to see we weren’t just wasting their time. I actually don’t remember coming home from the hospital but I know I did and I think it was from then we were eventually referred to paediatrics.
Every day I would wake up in agony and have to go through my prescribed medications which included fibogel (a disgusting liquid orange weetabix substance which was powder and you mixed it with water – if you left it it became like a hard jelly) I was to drink prune juice and syrup of figs just to try and encourage some movement but I was lucky if anything but blood passed for days. I didn’t have hospital admissions at this time just numerous GP appointments.
Day two of what it was like for me living with Ulcerative Colitis will be about my diagnosis.