Living with Crohn's disease or ulcerative colitis goes beyond the visible symptoms. It's a daily battle with a myriad of challenges that affect not only the body but the overall quality of life. In a recent inquiry within the IBDSuperHeroes community, members shared their experiences on the worst aspects of living with these inflammatory bowel diseases. Here are their unfiltered responses:
Rene Blakely: The Loss of Weight
“Loss of appetite and weight loss... I was not prepared
to go from over 250 lbs to barely 90 lbs, and I can literally go 3 days with
nothing to eat and not even notice, not one bit hungry... I look like a walking
skeleton, I am weak, and the fatigue is overwhelming!! Never realized how
important good nutrition was to keeping a body working right. Brain fog, muscle
cramps, and so on all caused by poor nutrition.”
Rene sheds light on the physical toll of Crohn's disease and
ulcerative colitis, emphasizing the drastic impact on weight and the resulting
fatigue. The struggle with nutrition reveals the interconnectedness of physical
and mental well-being.
Stephen Gomm: Navigating the Brain Fog
“The worst for way too many years to mention for me is
the brain fog and fatigue. The days where the cogs in my brain feel like they
are stuck in neutral and even stringing a four or five-word sentence together
seems like a chore because you forget what you were talking about halfway
through... That's almost every day for me atm.”
Stephen articulates the cognitive challenges he faces,
vividly describing the mental haze and fatigue that becomes a daily hurdle.
It's a poignant illustration of the invisible battles fought by those with IBD.
Sahara Fleetwood-Beresford: Balancing Pain and Urgency
“For me, it has been different at different times. The
fatigue is a beast, generally. It can make it so difficult to function on a
day-to-day basis. But the urgency and frequency of toilet trips has seen me
housebound at times, or having to take a poo in some places I'd really rather
not have, because it was that or in my knickers! But then there's been long
periods of unbearable pain. Not able to stand up straight, relying on heavier
and heavier pain meds. It's made me really moody and affected my ability to
work and function. So if I have to weigh them up next to each other, I'd say
the pain.”
Sahara shares the dynamic nature of her struggles, ranging
from the relentless fatigue to the urgency of toilet trips. She bravely
confronts the choice between discomfort and societal norms, illustrating the
adaptability required in navigating life with IBD.
Andy Bunting: Tethered by Fatigue
“I’d go with the fatigue, for me, this is also linked
with interrupted sleep due to having to empty my ostomy bag.”
Andy touches on the unique challenges of managing an ostomy
bag, intertwining the exhaustion of fatigue with interrupted sleep. It's a
glimpse into the multifaceted nature of the daily battles faced by individuals
like Andy.
Alannah-Jayne Simpson: A Symphony of Pain
“I was always in excruciating pain I could barely move, I
would black out on the toilet, I would vomit from pain too... Anything I ate
caused me pain and would go right through me... I've never experienced pain
like that in my life even compared to pregnancy and surgeries nothing has come
close to that, not even a prolapsed stoma.”
Alannah-Jayne paints a vivid picture of the relentless pain
that accompanied her journey, describing the physical toll on her body and the
emotional toll on her spirit.
Conclusion
These raw and honest accounts from the IBDSuperHeroes
community shed light on the often unseen challenges faced by individuals living
with Crohn's disease and ulcerative colitis. It's a testament to their
resilience and strength as they navigate a path filled with physical and
emotional hurdles. Through sharing their stories, they not only raise awareness
but also build a supportive community, proving that even in the face of
adversity, their voices will be heard.
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