I’m the smiley one. The glass-half-full person who never gives up. I’m the one who encourages and tries to inspire other people.
But today was one of those days when my normally up-beat personality failed to overcome the pain and discomfort of an invisible disease which I have lived with all of my adult life. I felt down, I slumped, I asked myself; "Will this ever end?"
Today I was suffering the Red Balloon of Pain.
When I was 19, I was diagnosed with an incurable autoimmune disease called ulcerative colitis. Symptoms include abdominal pain and bloating; frequent, urgent bowel motions; diarrhoea, which can get to the point where it is just blood and water; debilitating fatigue.
An autoimmune disease is one where something triggers your immune system to attack your own body, causing inflammation and destroying tissue. In the case of ulcerative colitis - or UC - the lining of the large intestine (colon or bowel) is under attack and becomes inflamed, ulcerated, and bleeds. UC comes under the banner of Inflammatory Bowel Disease (IBD), which includes Crohn’s, which can affect any part of the gastrointestinal tract but most commonly involves the small intestine.
There are over 80 autoimmune diseases; some rare, others common, including rheumatoid arthritis (inflammation of connective tissue in joints), multiple sclerosis (destroys myelin on nerve fibres), Grave’s/Hashimoto’s diseases (over-active/under-active thyroid), Type I diabetes (pancreas does not produce insulin), psoriasis (inflammation of skin), to name just a few.
No-one knows for sure what prompts the immune system to go into overdrive in the first place. People can have a genetic predisposition, so you will often find that certain disorders run in families. Researchers believe viruses and bacteria may be responsible for the initial immune response: the body fights off a pathogen but thereafter mistakes other triggers (stress, hormonal changes, another cold or viral infection) for that pathogen and goes into attack mode.
I reckon this was true in my case. I remember getting a particularly nasty gastroenteritis when I was 16. I went on antibiotics, got better and didn’t give it another thought. Three years later, I went through an extremely stressful period in my life and that’s when the UC struck. There is also a theory that certain harmful bacteria stick around and multiply during periods of stress - emotional or physical - causing symptoms to flare.
There is no cure for UC other than surgical removal of the bowel and most sufferers have to take medication for the rest of their lives to control the disease. Some of these drugs, such as corticosteroids (which are used to get acute inflammatory flare-ups under control), have bad side effects. Adverse effects include loss of bone mineral density leading to osteoporosis, loss of lean muscle, increase in fat tissue, ‘moon’ face, acne, facial hair, agitation and mood swings, increased blood glucose leading to blurred vision, ‘foggy’ brain, immune suppression so you become vulnerable to catching colds and infections. When you’re taking corticosteroids, your body stops making its own cortisol, so you have to wean off the drug slowly or you can go into shock - just another little man/woman trap for the unwary.
Basically, corticosteroids suck. But they work. Most of the time.
Because I exercise and have a diet rich in calcium and Vitamin D, my bone density has remained within the normal range, but I have experienced all the other side effects and it’s not fun. My specialist says most of his clients are ‘overweight and falling to bits’ on corticosteroids.
I’m an exception because, on top of my medications, I prescribe myself exercise as medicine; I follow a healthy, nutritious diet; I keep smiling and refuse to become an invalid.
Today was a bad day but tomorrow will be better. I’m sharing this because it might just help someone knowing that they are not the only one.
If you suffer from UC or Crohn’s feel free to share or ask me anything. Please re-blog if you know someone who could use the support.