Reading Jennifer Killicks’ piece in the Guardian
this Summer prompted me to write about my own experience of living with
colitis, probably one of the least talked about (amongst the most common)
chronic conditions, due to it’s embarrassing and painful symptoms. I have a
confession to make (that’s how it feels) I’ve been living with colitis for 20
years. 24 if I count the 4 years undiagnosed.
It all started after one of those crazy youthful
Summer’s of Love that I expect most 20 somethings experience in varying
degrees. Sadly mine was followed by a Winter of Discontent, after I
found out my long-term boyfriend was sleeping with my best friend.
It’s rather shocking seeing bright red blood in
the toilet bowl when you know you haven’t got your period, so I went to the
doctor. Stool samples were duly sent off and came back negative so I was sent
on my way. I stopped crying out every time I got one of the stabbing pains in
my groin. I went through a break-up. I met The GR. I fell madly in love.
Falling madly in love helped – a lot, my symptoms disappeared. We had 6
blissful weeks then a lot of bad stuff happened (which maybe I’ll share one
day). I took Prozac for a couple of weeks. I moved in with The GR. The bleeding
started up again.
Another unpleasant side effect of having rotten
guts is having rotten breath. I was exhausted, constantly had a cold as my
immune system was beating itself up and my skin was ravaged. At the time (my
late 20’s) I worked hard and partied harder. I constantly felt dehydrated – the
back of my mouth dry but put it down to not leading a particularly healthy
lifestyle. I went to another doctor. I remember him saying: Now what is we can
do for you?’ A little more ‘au fait’ with the lingo myself this time I replied:
‘There is blood in my stools.’ And him being the first person to acknowledge
there may be something wrong by saying: ‘Oh that’s not good. Let’s get you to a
specialist and find out what’s going on.”
She (the specialist) was lovely.
Specialist: ‘Do you get stabbing pains, like
someone is pinching you on the inside?’
Westendmum: ‘Yes.’
Specialist: ‘When you have to go. Do you HAVE
to go?’
Westendmum: ‘Yes’
Specialist: ‘Has anything stressful happened to
you lately?
Westendmum: ‘My mum died.’
Specialist: ‘Oh your poor thing.’
Then I had my first colonoscopy. Someone holds
your hand. They give you a sedative. A camera is inserted up your bottom, what
you can’t do with fibre optics these days! There was a monitor above the bed
which displayed what the camera could see.
Specialist: ‘Look, and then you’ll understand.’
(she really was very good). ‘This is healthy gut.’
I opened one eye, cripes there I was, inside-out
on telly, all red and shiny.
Then. 'And this is one of the ulcers'. Euew,
coldsores on the inside is how I’d describe it. Basically ulcerative colitis
(notice I’m not giving you capital letters damn disease) is when your body
over reacts and starts attacking itself, devouring
the stomach lining leading to the production of lots of painful ulcers. And as happens with an allergy,
your body produces lots of mucus to counteract the attack, which to put it politely is
very slippery stuff.
Finally diagnosed I was prescribed a course of
steroid suppositories, I put on some weight but they worked. I was symptom free
for a wonderful and stress-free (it does make a difference) year.
That was 2005.
Since then I have done several clinical trials
at the UCH one of them that worked for me was diet-based. I was tested for food
intolerance and was flagged for yeast and eggs (I blogged about it here). My
symptoms cleared quite well with extreme management on my part and again a
stress-free time.
The new drugs don't work for me, in fact they seem to have an adverse effect. Sadly the company that made steroid suppositories does not make them anymore and as I only have about 30cm affected at the end of my colon the doctor is adverse to giving oral steroids.
I have found ways to cope over the years. If I am working I don't eat - anything and only drink black tea or water, no sugar or milk.
Erbie has never known me any other way and as up until recently he insisted on coming to the bathroom with me every morning knows me very much this way!
I recently came across the LO FODMAP diet which rang true for me. While I was pregnant and working I used to have a cup of tea with milk around 4pm, I rarely made the 15 minute walk home at 5.30pm without having to make a dash for a public lavatory.
I could tell you the location of all the accessible public lavatories in central London - in fact I will, this might make a good app.!
W1 Toilets
Marble Arch area.
Edgware Road - MacDonald's - downstairs.
Oxford Street - Mothercare - downstairs
Oxford Street - Marks & Spencers - downstairs
Oxford Street - Selfridges - basement
Oxford Circus area
Libertys - basement
Marks & Spencers - basement
John Lewis - up the back stairs
Trafalgar Square
National Portrait Gallery - basement
Bloomsbury
The British Museum - ground floor beside the shop.
Goodge Street
The Fitzrovia Tavern
Tottenham Court Road
Costa Coffee
Bedford Square
The Dog and Trumpet - basement
The new drugs don't work for me, in fact they seem to have an adverse effect. Sadly the company that made steroid suppositories does not make them anymore and as I only have about 30cm affected at the end of my colon the doctor is adverse to giving oral steroids.
I have found ways to cope over the years. If I am working I don't eat - anything and only drink black tea or water, no sugar or milk.
Erbie has never known me any other way and as up until recently he insisted on coming to the bathroom with me every morning knows me very much this way!
I recently came across the LO FODMAP diet which rang true for me. While I was pregnant and working I used to have a cup of tea with milk around 4pm, I rarely made the 15 minute walk home at 5.30pm without having to make a dash for a public lavatory.
I could tell you the location of all the accessible public lavatories in central London - in fact I will, this might make a good app.!
W1 Toilets
Marble Arch area.
Edgware Road - MacDonald's - downstairs.
Oxford Street - Mothercare - downstairs
Oxford Street - Marks & Spencers - downstairs
Oxford Street - Selfridges - basement
Oxford Circus area
Libertys - basement
Marks & Spencers - basement
John Lewis - up the back stairs
Trafalgar Square
National Portrait Gallery - basement
Bloomsbury
The British Museum - ground floor beside the shop.
Goodge Street
The Fitzrovia Tavern
Tottenham Court Road
Costa Coffee
Bedford Square
The Dog and Trumpet - basement
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