Day two of Crohn’s and Colitis awareness week (again backdated!) this post is all about what it was like when I was diagnosed with Ulcerative Colitis and how they diagnosed it. To find out what it was like before my diagnosis please click here. Again this is something I have blocked a lot of it out as it wasn’t a particularly nice time or situation to experience. I felt like a long time to my diagnosis but after diagnosis it felt much longer trying to get into some form of remission.
By now I was in secondary school and passing lots of blood and I was visibly not well; by this I mean my face was thin, gaunt and white – in fact I remember one school photo I looked that jaundice I didn’t want to take it home. I was losing loads of blood and still very constipated to the point overflow was a normal occurrence for me. The paediatric consultant was now starting to believe that I wasn’t suffering with IBS and asked one of the surgeons to preform a colonoscopy. Now there was a little in joke with my family because anyone that needed a surgical procedure or surgery in my family was done by a lovely man called Mr Ward; he still stops and talks to me when he sees me in the street which shows how lovely he is.
My colonoscopy was done under general anaesthetic which was my first time being out under and I remember being with my mam and then waking up in a room with the radio on and her not being there; this resulted in me screaming my head off in terror. She told me that she could hear me down the corridor now whether that was true or not I have no idea but to an extent it was reassuring that she was around even if she didn’t really hear me screaming. The results came back in that I had Ulcerative Colitis and I was to have regular check ups because at that time I was their youngest case which made total sense that they wouldn’t think to look for it. However this now meant that they would look for this in other younger people and more children were now being admitted but mainly with Crohn’s to the children’s ward; I wasn’t to meet anyone with Ulcerative Colitis until I had had my jpouch surgery and even then both were men! This started the long line of hospital admissions, blood transfusions and the devils tic tacs that are steroids. One admission I was taken from the Friarage to Leeds General Infirmary for more specialist care and taken off mesalasine and put on azathioprine it was also when I experienced life with an IV feed tube – which I was a bugger for sneaking food when my mam was out of the room; she stayed with me for the 10 day stay on a camp bed which must have been hard as I have a younger sister and brother.
School was now put at the back of my mind as I was hospitalised for around two weeks every few months due to needing transfusions or pain management, if I wasn’t in hospital I was at home unable to go to school. I tried to teach myself Punjabi once by watching soaps on an Indian channel – it didn’t work but it was worth a try! I even requested a tutor whilst in hospital but they only visited me once and weren’t very helpful; but you know I was the child who didn’t like school according to a GP – if I didn’t like it why on earth would I ask for a tutor? I have very fond memories of the children’s ward at the Friarage hospital the staff were really nice, never made me feel like I was lying or faking it and used to let me watch the portable TV with all the Carry On films I could have wished for! Now I am not entirely sure if the nurses knew or if they were truly snuck in but my brother and sister were bought rabbits (I was not and still am not a rabbit fan) as pets and so I could see them they wore hoodies in summer and had a rabbit in their pockets and brought them into my room so I could see them. That was my first and only experience of therapy animals! The ward was open to parents 24hrs a day and my dad would work shifts and if he was on late shift would sometimes bring a happy meal to eat with me after 10:30pm which was always really nice.
At one of my appointments with my consultant he said he needed to do an examination of my rectum with his finger which I am sure many of my readers may have experienced; but on one day he said he “needed to check my vagina was formed properly” and inserted a finger in my vagina. I don’t remember if my mam was there or not but I felt extremely violated and I am not sure if I even told my parents about it. One reason I feel concerned about it was he used to pass comment on my eyes which my mam would always be like “How can you see them under all that make up?” at this point I was in my ‘so goth it hurt’ phase with dark eye make up and god knows what else I wore back then although I still probably would think I looked cool if we took photos from that time of my life but I didn’t want reminders of how awful I looked.
When I did go back to school for slightly longer periods of time, every single week I would miss half of first period on a Wednesday which was science so I could got to hospital and have bloods taken. I now have a really big fear of needles in my hands even acupuncture needles and I will beg to the point of tears so they will put any needles into my elbow crease rather than my hand even though sometimes it is more awkward doing so. We had two weeks of work experience and mine was working in a residential home; which at the time was not something I wanted to do but due to being in hospital most of the other jobs were taken. Little did I know then that it would be the best work experience ever and I would keep it up and have variants of it as my day job for the majority of my working life! But halfway through I had a phone call to say my bloods were showing all my counts were low and my inflammation markers were high and I needed to be hospitalised immediately; I was having none of it and carried on with my jobs until my grandad turned up and fireman lifted me out of the building into the car. I am sure work had been informed that I was poorly and that he was going to take me to hospital. But I was really annoyed and it was one of the first times I felt angry to be sick as other than school it hadn’t really affected me being able to participate in things; I just muddled through the pain and fatigue.
Throughout my teens I tried to be normal as best I could; I had and in fact still have three very good friends who came to visit me in hospital and never made me feel different which was exactly what I needed. I also was part of the local Air Cadet regiment and although sometimes I struggled with fatigue or pain which meant I couldn’t always join in parade but I was able to muddle through some sports days with the cadets, fly planes and try my hand at shooting rifles (I was very bad at this) the one parade I always took part in was Rememberence Sunday. Yes being a teen with Ulcerative Colitis was hard and definitely embarrassing at times but I got through it and still have some good memories and was able to pass my exams (although the A Level head of year kicked me out for attendance as they didn’t understand about chronic illness) get a job, have nights out and date!
Day three’s post is going to be about working with Ulcerative Colitis.