Discovering I have Crohn's
I was diagnosed with Crohn’s two
weeks ago, however due to my lack of awareness and understanding of IBDs I was
living with the symptoms for, I really don’t know how long, but it must have
been many months where I was swept away with university life and gleefully in
denial that anything was wrong with me. Writing a blog seems like a positive way
for me to spread awareness of Crohn’s; hopefully this could help stop people
doing what I did and mindlessly ignoring their symptoms, (because word of
advice, if you start shitting six times a day, it’s not normal and you should
get it checked out). Also I’d like to share my experiences with people who may
also be suffering from or know people who have IBDs.
I’m not lazy I was just ill – looking back on
my time with the illness before it was diagnosed
When I think about what I did during the day throughout my second
year at university, it mostly consists of sitting on the sofa wearing nothing
but my dressing gown and having a nap. I had myself convinced that the reason I
didn’t want to walk down to the shops to buy food was because the street that I
lived on looked so ugly and dreary. Moreover, looking back I understand that as
someone who had danced my whole life and considered myself fit and healthy,
there is no way it would have crossed my mind that I actually didn’t want to go
because the twenty-minute walk was tiring me out. Despite pretty much abandoning
the prospect of studying for my university course, I still put myself in four
dance numbers and two plays simultaneously, so spent most weeknights from six
until ten at the guild of students. My determination to fully immerse myself in
my first year of corona free university life, in conjunction with my impulsive
nature and fear of missing out, also lead me to spend usually three nights a
week vibrantly dancing in clubs. I had noticed that I was throwing up more than
I should be on nights out which lead me to cut down the amount that I was
drinking, however I did also begin to throw up when I was sober, quite often in
public toilets and during play rehearsals and I put this down to having eaten
too much food. (I was trying to eat as much as possible at this stage because I
had become aware of my weight loss and didn’t want my boobs to shrivel away).
In terms of the food I was eating, it was mainly meal deals
for lunch and a ready meal for dinner, which starkly contrasted to my love of
cooking and experimenting with ingredients in first year. I don’t think this
year’s housemates would believe I could cook since the most exotic thing I made
was cheese on toast, but it seemed easy to justify this as normal behaviour considering
stereotypically, students are renowned for living on a diet of pot noodles. I
had mentioned to my parents and friends a few times that my weight was going
down, however this didn’t seem concerning because I’ve always had a small frame
and have been borderline underweight at times, furthermore after my break from
dancing during covid I had just put it down to the fact I had begun exercising
again.
The first time I began to worry about my health was when I
started getting night sweats, but again I never related this to the diarrhoea or
tummy aches; I thought it might be some hormonal problem instead and then they
seemed to go away for a while so I stopped worrying about them. I’ve been
telling the doctors that the tummy aches and diarrhoea began in March, but I
really couldn’t say when they started as I was so caught up in dance and play
rehearsals at the time. I was unaware that it was abnormal to have a change in
bowel movements that lasted that long, so I just ignored it. Tummy aches are a
problem that I suffered with throughout Primary school and had seen doctors
about, but we never found a cause for them and they eventually went away,
(perhaps that could’ve been a sign of Crohn’s back then, I guess we’ll never
know), nevertheless, despite being really painful, they didn’t seem like a big
deal to me so I just made myself put up with them. My Mum realised something
was up when I told her over the phone that they weren’t even that bad if you
just breathe through the pain, because apparently you’re meant to save that
coping mechanism for when you’re giving birth.
Although I had all of these symptoms, I still had a hell of
a good second year full of so many great memories and new experiences every
week and I wouldn’t change a second of it. I never once turned down a night out
or a dance class until I got to the point when my ankles had given up and I could
barely walk, and even then I still attempted the dance society’s charity
danceathon, which in retrospect wasn’t the best idea. When the doctor told me
my test results had come back showing that I had severe anaemia, I looked back
to all the reading I didn’t do, all the hours I spent sat on the sofa staring
into space because I couldn’t be bothered to switch on the TV, all the lectures
I slept through (I even fell asleep in a seminar once when I was sat right at
the front), and suddenly everything made sense. I thought that I’d just become
a really lazy person, but actually I was ill the whole time.
.png)
My experiences of the diagnosis process
It was when I came home for Easter that I looked at myself
naked in a full length mirror - I didn’t
have one in my room at uni, and I first realised how bony I had become. I then
weighed myself and it was a shock to discover that I had lost over an eighth of
my body weight since last summer. I told my parents this and that I had had
diarrhoea for the past couple of weeks and we all began a mission to fatten me
back up. My mum suggested at this stage
that I saw a doctor about my change in bowel movements, but I had looked up the
symptoms and convinced myself I just had IBS. My body has a history of reacting
to stress in strange ways and in 2020 I suffered from indigestion for six
months until it vanished the second my A level results came back, therefore
stress related IBS seemed like a logical justification. On the other hand, when
I was asked what I was stressing about, the only thing I could come up with was
that the ratio of girls to boys at my university was so girl heavy that I
couldn’t find enough nice boys. This obviously now seems like the most
ridiculous thing that’s ever come out of my mouth, but I was so engrossed in
university life that I honestly thought that was the reason. My parents did a
good job of fattening me up over the holidays and sent me back to uni a few
pounds heavier and still looking fairly healthy. One of my eyes was also
looking a bit bloodshot but I just assumed I must have stabbed it with a
mascara and ignored it.
My first two weeks back at university were great fun and
then suddenly everything went downhill. The night sweats started coming back
and I completely lost my appetite, despite trying my absolute hardest to eat
because I was aware how quickly this would make even more weight fall off of
me. One night I ordered myself a milkshake for my dinner, but still couldn’t
get through the whole thing. My other eye had turned red as well so I went to
the pharmacy and they gave me some eye drops for conjunctivitis. Nevertheless,
I still continued going to dance classes and out clubbing whilst working on
assessments and coursework for my course.
Eventually after a Saturday night where I stayed in the
university club until it closed at four, I woke up with both my ankles and the
side of my left foot really sore and I could barely walk on them. The next couple
days I just iced my feet and rested them in the hopes that they would recover
quickly; I still didn’t make the connection between this and the diarrhoea
because it seemed like a completely different problem. At this point I was just
ordering my food in because I was really struggling to eat. It was on the Wednesday
that I attempted the half an hour walk to campus to partake in the charity
danceathon - I thought about five minutes into the walk that I should probably
turn back, but my deluded self still hobbled there and did one and a half classes
before I sat down to watch. I was still determined to stay at university and
stick it out, however it was at this point my parents convinced me to let them
pick me up and take me home to see a doctor about my long list of symptoms,
moreover I wouldn’t be able to do anything whilst I couldn’t walk anyway and they
would be able to cook for me.
When I came home I really did look like a zombie – I was
pale and skinny with red eyes, limping around. I was still convinced that it
was just IBS when I went to see a doctor and I was fairly relaxed at the time;
it wasn’t evident in the appointment that my eyes and feet were related, but
the doctor gave me lots of stool samples and blood tests to cover everything
that could be causing my diarrhoea.
The phone call I got back from the doctor marked the beginning
of the hardest stage of my experience so far. I found out that I had severe anaemia,
but I was prepared for this as my Mum had already said she’d thought the
diarrhoea might have made me anaemic. Then I found out that the first test that
had come back was the test for bowel cancer where they had found high levels of
hidden blood in my stool sample. The doctor had assured me that that didn’t mean
this was necessarily what I had and that there were other illnesses such as Crohn’s
or colitis that considering my age it was more likely to be, but it was still
pretty terrifying. Knowing there was a chance that I could have cancer suddenly
put my life into perspective and it seemed ludicrous the fact that I’d thought
it was being caused by me stressing about boys. Furthermore, discovering that
there was actually something wrong with me made me look at my body in a
different way, it didn’t really feel like mine anymore as I knew my weight was
now out of my control and when I looked down at my body it looked like it did
when I was thirteen again – it didn’t feel like my adult body.
I was booked in for an emergency colonoscopy within the next
two weeks. In terms of how I felt about this, it’s not the most pleasant thing
to have to have done, but so many people have had them and said it was fine and
I was so much more worried about the results than the procedure. My Mum had
told me not to read anything myself, but let me know that 90% of people who
have bowel cancer screenings don’t have it, and also 90% of patients are men
over sixty, obese, unfit and smokers, so I just had to hang onto the fact that
I didn’t fit into any of these categories. My parents took me back to
university for a few days before the colonoscopy so that I could see my friends
and still go to the dance society’s summer ball which was really fun, but I did
take it a lot easier knowing that I was ill.
My experience of the colonoscopy was completely fine and
nothing to worry about. I was quite distressed about taking the laxatives
beforehand and I ended up throwing both sachets up, but my Mum rang up the
hospital and they said that some people do react in that way. For the
colonoscopy they had me nicely sedated so that I was all drowsy and I was
blissfully watching the video of what my inflamed insides looked like on the
screen (they looked insanely gross). They had told me that it was Crohn’s
whilst I was having it done, so from that moment on, all I felt was pure relief
that it wasn’t cancer. When they took me into hospital, they told me that it
was really inflamed and they were also concerned because of how anaemic I was.
They recommended that I stayed in hospital so they could give me intravenous steroids.
I ended up doing five nights in hospital and I couldn’t
fault the way the NHS staff looked after me. I feel so grateful for the way
that I’m being monitored and having everything checked to make sure that nothing
is wrong. My test results seem to be positive and showing that the inflammation
is going down nicely and I already feel so much healthier.
I would really like this blog to highlight the importance of
seeing a doctor if you do experience a change in bowel movements because it was
only a couple of days ago when I received my discharge letter and discovered
that my Crohn’s was described as severe and at high risk of perforation when it
was eventually caught.
Comments
Post a Comment