*This is the content of a special wee project I created and designed for a special awareness event @teamtenisa are holding from the 10th of June! - All this content is my research, based on my own lived experience and was proudly produced and presented via video by me for the event. This video can be found on my home page! XO - Please contact me, if you want me to collaborate with you. Thank you!
Hello, My name is Leah and I have lived with Crohn's disease for 16 years. IBD or Inflammatory Bowel Disease represents two conditions, Crohn’s disease and ulcerative colitis. Crohn’s disease and Ulcerative Colitis are invisible, chronic or lifelong debilitating conditions. Crohn’s disease can affect any aspect of someone’s gastrointestinal tract from their mouth to their anus. Colitis affects the large intestine. They are auto-immune disorders that can affect anyone at any age. More commonly late teens or early twenties.
Until recently there was no definite cause for these conditions. However, I was told it could be a genetic defect. For the past 8 years, I believed an abnormal response from my immune system to environmental or lifestyle triggers or possible long-term exposure to certain situations could be the cause. – As of the 6th of June 2024, a probable cause has been identified by researchers at The Francis Crick Institute in London. They have discovered a DNA weakness in macrophages or white blood cells that surround and kill microorganisms in the body by excreting pro-inflammatory and antimicrobial mediators the DNA weakness leads to a faulty inflammation regulator in the macrophages in patients with IBD.
IBD is considered an invisible illness. However, it is far from invisible. It can affect the sufferer both physically and mentally and cause symptoms such as persistent and painful abdominal pain and persistent and painful diarrhea, blood and or mucus in their stools, fevers, vomiting, fatigue and nutritional deficiencies due to malabsorption. A result of inflammation or damaged bowel. This can lead to a myriad of other health issues. When the bowel gets inflamed or strictures (narrowing of the bowel) occur, they can lead to blockages causing excruciating pain. These complications can lead to surgery where the damaged bowel is removed. If this happens, there may be a requirement for an ostomy. This is where the individual has either an ileostomy, where a portion of their small bowel is exposed through their abdomen and empty into a pouch or a colostomy, where a portion of their large bowel is exposed through their abdomen and empties into a pouch. In some instances, these ostomies can be reversed and in other situations, they may not be able to. For those requiring an ostomy due to IBD, these are not only lifesavers, but they give life and freedom too. My personal experience with an ileostomy gave me relief from anxiety and excruciating pain from strictures and blockages. Situations that dominated my life since 2010.
The complications caused by IBD can lead to feelings of anxiety and depression due to the disruptions they can have on personal, professional and family life. There are periods when symptoms are calm, and you feel well enough to tackle life. Then there are periods when the symptoms reappear, those are called “flares”. A sign the disease is active. There is no real warning of when these events may happen. This can mean we feel we are living on a knife edge. We cannot plan for our future or focus on the future. There is a constant requirement to remind people about our conditions, the symptoms we are feeling and why we can’t go out and do things the way we used to. This can be very draining and frustrating and lead to issues such as depression because we not only live our condition but we are reminded of how much we have lost when we talk about it. It is verbalising your loss time and time again.
Visiting public bathrooms causes anxiety and means you can be met with long, painful delays on the toilet which can result in unpleasant situations, that leave you open to ridicule, filthy looks and comments from people who fail to accept or understand that there are conditions out there that can cause havoc to people’s digestive tract.
Although these conditions seem invisible, they are not. I believe everyone deserves to live their best life. We need your support, understanding, acceptance and help to do this. – If you are asking “How can I do that?”
Remember –
“A A” “A A”
- Accept that there are invisible, chronic or lifelong debilitating conditions
- Acknowledge the person, they are still the person you know and love
- Ask the person what you can do to help them, not every story is the same
- Assist the person, and help them to live their best life at home, work and play
This applies to all conditions! - Both invisible and visible!
("You have already proven you care by being here today!")
The rest is up to every one of us to continue to create a diverse and inclusive world. – You don’t have to reach the entire world, hold your hand out to those around you and watch as your change causes a ripple effect. Thank you.
- Please see my (IBD AWARENESS VIDEO ON MY HOME PAGE) for a verbal representation of my content and story!
Thank you!
Love and Light!
Leah XO
#iamnotinvisible💜💪🏼 #wearenotinvisible💜💪🏼#teamtenisa
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