My condition is currently partially controlled with a
combination of Methotrexate and Humira, and I have experienced Pentasa, Mercaptapurine, Prednislone, and Salofalk Mesalazine
foam.
My condition has been better in the past few months, so I’ve
wanted to be able to help others while I am in a position to do so. I started a
twitter account called ‘Awkward IBD’ (@awkwardIBD) detailing the ‘lighter’ side
of IBD, and so when I was subsequently asked to write a blog for Me and IBD, I
was honoured!
I realised, however, I’ve never written anything really
meaningful, and certainly not over 140 characters…
I’m not a celebrity or sportsman, who can tell you about how
I can cope with things far beyond the average, and prove that IBD sufferers can
do anything… Nor am I particularly funny or inspiring…
(I think they may have the wrong man for the job…)
But before I email them back, and tell them they’ve made a
dreadful mistake, I thought I’d type aimlessly and see what happens…
(543 characters! Nothing meaningful yet though…)
The fact is, I am your average IBD sufferer, and I
hope (because it’s all I have right now) lies the value in what I am writing. I
have toilet-centric agoraphobia, my belly hurts, and I spend far longer than
I’m happy to with my trousers round my ankles (in a purely socially acceptable
manner). If you already have IBD and are used to living with it, this may not be
ideal for you (though I hope you can empathise), but the newly diagnosed, who
don’t know what they are facing… those are the people I may be able to help.
The internet reaches everyone, and everyone is different, I
have no idea who I am actually talking to, so, I will imagine I am talking to
my 13 year old self. That quiet kid, who had no idea. Who one autumn evening in
2001 was told he had a disease he’d never heard of. These are the things I
would tell him, and these are hopefully the things which would have made the
next 12 years easier…
Information Gathering – ‘Knowledge is
Power’ vs. ‘Ignorance Is Bliss’
Your first instinct will be to go out and find out as much
information as you can about your condition.
Undoubtedly you will go looking
for cures and what can help you. I completely agree with this idea, but I will
urge caution for a number of reasons.
The internet is filled with horror stories; from ineffective
treatments, horrible side effects, clueless doctors and horrific symptoms. It
is all there, and almost certainly, the easiest information to find.
I’ll deal with each in turn, please bare these points in
mind when you are researching.
Every treatment, is not 100% guaranteed to work; I've been told that for many, the
chances are as low as
25%. However, these treatments have to pass clinical trials, and are proven to
help, whatever sceptics, keyboard warriors and conspiracy theorists would have
you believe.
Doctors** prescribe these treatments on a fairly regular basis,
and monitor their patients…if it didn’t work for any of them, they wouldn’t
prescribe it! When your Doctor is prescribing you a new treatment, ask them in
their experience how effective it is, and how likely it is to make a
difference.
You can research all you like online about a certain drug, but you
are very unlikely to get an impartial view. You will either likely be reading
the pharmaceutical companies’ ‘blurb’ on why their drug is the drug to buy, or,
doubters and disgruntled patients, who have had their hopes dashed because it
didn’t work for them, who are equally
biased in the opposite direction, whether consciously or not. The best person
to ask about effectiveness is your Doctor, as they will have (hopefully) an
impartial view, and prior knowledge of how often they are effective with other
patients.
Similar to ineffective treatments, sufferers all experience
side effects in different ways. I myself have had the same courses of drugs
over the years, and each time have experienced different side effects. I also
know other people who have experienced further completely different symptoms.
Everyone’s experiences will be slightly different. Hopefully you won’t
experience any, but if you do, bare this in mind. When asking your Doctor about
these treatments, also remember to ask about the most common side effects and
those to really look out for in case they are indicative of a further health
risk. Although they are all listed in the drug’s information, many of those
listed are not common and you can mistake or miss important/’tell-tale’ side effects.
Quite often online, you will come across people complaining
about their Doctor. While, no doubt, there are bad workers in every profession,
I wouldn’t assume everyone slating their Doctor online is visiting Dr I.N.
Competent. Doctors can only work off the information presented to them, often,
as I will cover later, a patient can either miss, or say something which will
guide a Doctor in the wrong direction (whether anyone is at fault for this is a
conversation for another time). Learning to communicate with your Doctor in the
right way, is very important, and can save you an awful lot of time and
trouble. Just because a consultation or treatment hasn’t gone how you would
like, or expect, it is not necessarily because they are a ‘bad Doctor’.
The symptoms of IBD are wide and varied. I have read many
people’s stories online, which
HOWEVER, you must
remember 2 things. One, the more severe cases, are likely to be the ones shared,
and two, just because someone had it that bad, doesn’t mean you will. That is
the one positive with IBD; it is not a condition where everyone ends up at the
same place. Some people will have virtually no problems all their life; some
people will have tremendous difficulty. Most will fluctuate in and out of these
two states to varying degrees.
The last thing to be wary of, and I aim this more to parents
of young people being diagnosed, is to exercise caution in finding every fact
and reading every story, as it can be a very frightening thing, especially for
a younger person. My parents protected me, I would argue a little too much, but
I appreciate why they did it. If at 13, I had been presented with everything I know
now, I don’t think I would have been as confident and up for the challenge of
fighting the condition as I was.
At the end of the day, it is your decision. It makes sense
to find out as much information as you can. To know what you are fighting, what
you are up against, but be honest with yourself… If you are the type of person
to be easily down heartened, think very carefully before delving too deep. You
cannot un-see and unlearn what you find, but if you are positive, look in the
right places, and ask the right people the right questions; you will put
yourself in a much better position to lead the best possible life with your
condition.
(**Doctors are not often solely responsible for the
well-being and care of an IBD sufferer, and the work of nurses and other
healthcare professionals is invaluable to many IBD sufferers. For simplicity's
sake, I have used that instead of other more unwieldy wording…)
