Chronic Illness Spotlight is a series in which different illnesses are highlighted and a Chronic Illness Warrior that lives with the illness is featured. In the last article, we discussed Systemic Lupus. Today’s post will spotlight a Chronic Illness called Crohn’s Disease.
What is Crohn’s Disease?
Crohn’s disease is an Inflammatory Bowel Disease that causes inflammation of the digestive tract and can cause abdominal pain, severe diarrhea, fatigue and malnutrition. This inflammation often spread deep into the tissues of the digestive tract and it can be debilitating and sometimes life threatening.
Symptoms of Crohn’s Disease
The symptoms typically will develop gradually and can vary in degrees of intensity. A person with Crohn’s Disease may experience times with no symptoms and will be considered in remission. The most common symptoms are:
- Abdominal pain and cramping
- Blood in your stool
- Mouth sores
- Reduced appetite and weight loss
- Pain or drainage near or around the anus due to inflammation from a tunnel into the skin (fistula)
To find out more about Crohn’s Disease, visit the Crohn’s and Colitis Foundation. They are a great resource for treatment options and support.
Kelly has been blogging about Chronic Illness since 2016. She is a contributor to The Mighty, an international Chronic Illness publication.
In addition to Crohn’s Disease, Kelly also has had a Brain Stem Tumor removed, has Osteoporosis, Neurofibromatosis 1 and Endometriosis.
Thank you for sharing your story with us!
Briefly explain your illnesses
Crohn’s caused me severe abdominal pain, body aches, swollen joints, eyes, and skin. Osteoporosis was a result of malnutrition and medication for Crohn’s.
Neurofibromatosis 1 is genetic and I have had it since birth. I also had a craniotomy in 1999 to remove a Neurofibromatosis 1 related tumor from my trigeminal nerve.
How has your illness impacted your life?
At first I powered through. I had to learn how to walk again after the brain surgery and handled it like a champ. Crohn’s showed up 3 years after the brain surgery and once I had it under control, all seemed well. I kinda felt like a fairly normal person.
In 2008 I suffered a flare of Crohn’s and it took a toll. I had to quit my job. While I’ve been in remission since 2009, I have never been the same. I consider myself a professional patient.
How long did it take to get diagnosed?
Crohn’s Disease took two years although I think I may have had it for many many years. Neurofibromatosis 1 took a while, I was 29 when it was suspected and did not receive a positive diagnosis until I was 40.
Why do you think it took that long to get a diagnosis?
Primary care medicine doctors are the gatekeepers of medical care. At the time I was dealing with mysterious abdominal pain and all the inflammation, my doctor would not refer me to a specialist. It took relentless begging on my part to finally get a referral.
The Neurofibromatosis 1 diagnosis criteria is extremely specific. I lived in limbo until genetic testing became more reliable.
How is your life different now compared to a few years ago?
I go through ups and downs. Right now I feel good! We bought a house a few years ago and I have enjoyed working on the inside and outside to make it a home.
What do you do on you bad days to make them better?
Depends on how much energy I have. Maybe a walk, read, write, cook, or clean. Sometimes staying in bed is the best I can do so I just go with it.
How do you handle the isolation you may experience because of your chronic illness?
I have a nice group of cyber friends to chat with when I’m hold up at home. I also make myself go out and engage in random chit-chat with strangers like when I’m standing in line at a shop.
What advice would you give someone that is trying to get diagnosed or is has a new diagnosis?
Don’t give up. If you know something isn’t right, speak up. Don’t downplay your pain or symptoms. And at the same time, don’t be a Google scholar. You will ultimately need healthcare pros on your side so while it’s great to be informed, don’t be jerk about it. I almost lost my GI doctor because I wouldn’t shut up about kelp supplements for my thyroid. He advised against them but I took them anyway and totally screwed up my liver panel lab work. Lesson learned!
I want to thank Kelly for sharing her story with us. After reading several of her blog posts, I think that we approach our illnesses in much the same way. She definitely has a great sense of humor and is using her story to educate and help others.
Where you can Find Kelly!
Blog: Write Down the Middle
Read more Chronic Illness Spotlight Articles:
- Chronic Illness Spotlight: Familial Mediterranean Fever
- Chronic Illness Spotlight: Rare Bone Disease & More
- Chronic Illness Spotlight: Ehlers Danlos Syndrome
- Chronic Illness Spotlight: Myalgic Encephalomyelitis & Fibromyalgia
- Chronic Illness Spotlight: Atypical Bilateral Trigeminal Neuralgia