I had a somewhat of an odd journey, symptom and diagnosis wise. Apart from feeling really unwell with stomach pains, my main symptom was anaemia. I started to see lots of doctors and received a few miss-diagnoses. This, I have found out, is pretty normal when waiting for a diagnosis for IBD!
First I was diagnosed with IBS by my GP. IBD does often get confused with its similarly sounding acronym IBS but they are not related at all. IBS stands for Irritable Bowel Syndrome which can be managed and can even go away altogether, however, IBD is an immune-mediated disease which, unfortunately, has no cure. Later I was diagnosed with Gastric Migraines and was also hospitalised with a severe bacterial infection, which I now think was all related to my Crohn’s Disease.
Finally, due to a lot of pain and lots of quite invasive
tests (endoscopy and colonoscopy) I first heard the mention of Crohn’s Disease.
I was sedated but remembered hearing the Dr say “it looks like Crohn’s”. I then
had to have one more horrible test to confirm it, a barium x-ray where you
drink a solution and have x-rays taken of your insides while it works its way
through. I still have the copy of this as it clearly shows my (then) pretty bad
blockage from ulcerations. February 2005, I finally had my diagnosis.
I’d never heard of Crohn’s Disease. The Dr told me to not
look it up on the internet, so, I didn’t! It was very scary at the time and my
then manager’s reaction was “well it can’t be that bad”. But it was.
I was put on some maintenance drugs but they didn’t help
much and by June of that year, my blockage was so severe, I ended up in
A&E, and had to have emergency major surgery to remove over 30 cm (12
inches) of small intestine and I have a huge scar to prove it. The surgeon told
me afterwards that it was the worst case he’d seen!
After recovering from the surgery, I felt better but had a
new challenge. Due to the surgery, I had what my Gastroenterologist called “a
shortcut” and a new additional diagnosis of BAM or Bile Acid Malabsorption
along with obviously still having Crohn’s Disease (because, like I said, no
cure) and I take medication for this every day since. It means I must be
careful what I eat and always have medication around (and hopefully a toilet
too).
For years, I only had to be on the BAM medication and I felt
ok Crohn’s wise. I was in remission. However, after a while, I started feeling
more unwell so for the last few years my medication for Crohn’s Disease has
been increased. Firstly, it was just pills but now it’s both pills and regular
injections and these are about to be increased as well. Being on regular
medication like this makes me feel more like a sick person, unfortunately. Being
told to shield during the first lockdown earlier this year also made me feel
that way.
Luckily, since my diagnosis, I have found support in groups
set up by fellow IBDers. One’s a group called IBDSuperHeroes.
Most days I feel ok. But lately, because I’m in a flare and
my meds need adjusting again, I feel fatigue. This is different to tired. My
body is fighting the inflammation caused by the flare and this is exhausting.
That and the pain, obviously. Unfortunately for me, weight loss has never been
a symptom!
I do consider myself lucky to have been able to work
fulltime throughout (except for the two months signed off for surgery) as I
know some people with IBD who are too unwell and some who have had issues with
employers who just don’t understand. Some days I just need a little extra time
to get up and wait for the pain to subside, some days it doesn’t and I can’t
work. Working from home now has certainly helped with that as the commute is
less daunting! Having an understanding manager also really helps!
Also, having Elliott (my husband) around all this time for
support makes a huge difference. I met him when I was really ill, before I was
diagnosed, and through the surgery, he still stuck around. No refunds though as
he knew I was faulty when he proposed! 😍💕😉
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