I did a quick video for the #IBDSuperHeroes World IBD Day
challenge, but I thought of a lot of stuff after, which I would never have got
into less than two minutes anyway. So, here’s my answers in blog form!
You still have time to get involved with the challenge.
Who are you (name, type of IBD and diagnosis year)?
Sahara, diagnosed with Ulcerative Colitis in 2007.
How does your IBD impact your daily life?
It’s actually really weird, because I generally think it
has very little impact on my daily life, because my health is so much better
now than it has been for years and years. But, when I actually stop and think
about my life in comparison to a "healthy" person, it is actually
quite different! I have just gradually changed how I live over a long period of
time, so it’s MY normal, but it's far from normal really!
I have a permanent stoma now, after having a Jpouch excision
in 2018 due to severe, recurrent Pouchitis. My intestinal symptoms are mainly
under control.
I take omeprazole daily for acid, or I experience abdominal
cramps and heartburn. I take a number of vitamins because of malabsorption due
to having no colon. I have iron infusions when I need them, as I don’t tolerate
oral iron well, plus I take regular loperamide to regulate my stoma output.
Dehydration is a constant battle, so I am very aware of how
my hydration levels are. It’s not simply a case of drinking more water for me.
I have to have an electrolyte replacement solution if I become dehydrated,
which doesn’t taste too great.
I poop in a bag which I have to empty multiple times throughout
the day and at least once every night. I generally change the bag every other
day. Again, it seems normal to me now, but I guess it has to be counted as an
impact on daily life!
I eat in a very specific way, at set times. I can now eat
most fruits and vegetables, but I have had years where I couldn’t. A few, I can
east on their own, but different types usually need the addition of some form
of starch. How much depends on the vegetable, and I automatically know now, so
it’s like second nature.
I don’t sleep well - ever. Between having to get up and go
to the toilet and the joint pain which means NO positions are comfortable, I
have very little time in restorative sleep stages, which I have no doubt
contributes to the fatigue and lack of concentration.
The things I do notice having an impact every day are the
chronic fatigue and joint pain. Energy levels change day to day, so it can be
hard to plan activities based on how I feel one week, because the next one
might be completely different. Pacing myself is something I have got a lot better
at, but there’s no real algorithm to get it right all of the time. I still
frequently realise that I have too many things to do, and if I do manage to
them, I suffer for it.
How has having IBD made you a stronger, or better person?
If someone had told me just 3 weeks before my diagnosis that
I would go through 7 bowel surgeries, have 3 different ostomies and ultimately
end up happy and grateful for a permanent one, I would genuinely have laughed
and said "Get fucked". I was a bit of a dick back then… Yet here I am
- smiling.
The journey has made me stronger, because I have got through
everything that I thought would beat me. Nearly dying made me re-evaluate
everything. Work, relationships, what I was willing to accept in my life and
how I handle stress.
I have changed career, gotten rid of many negative
influences in both lifestyle and human form. I run a support group and
awareness campaign. I sit on the board for Cure Crohn’s Colitis. I now earn
money from the stuff I invested so much time and effort in, purely because it
mattered to me! I write about IBD and ostomy life for a couple of different
sites and magazines, and I use my personal social media accounts to support
others with IBD, and hopefully help ease the journey and contribute ideas to
how people with IBD can overcome the barriers they face. Plus, I work with
Pharma, in the hope that together, we can finally create an activated
community. Providing tools to take back some of the control it feels like we
lose to IBD.
