My Crohn’s Disease Diagnosis – Definition and My Experience

Crohn’s disease is an auto immune disease and a type of inflammatory bowel disease. I was diagnosed with Crohn’s in June, 2023 after suffering excruciating symptoms. So what exactly is Crohn’s, and what was my experience? Read on while I describe my Crohn’s disease diagnosis..

What is Crohn’s disease?

Crohn’s disease is an auto-immune disease and a type of inflammatory bowel disease (IBD) that causes inflammation of the digestive tract. The inflammation can quite often lead to moderate to severe abdominal pain, severe diarrhoea, malnutrition, weight loss, and fatigue.

Crohn’s can affect any part of the digestive system, from the mouth, through to the colon but it most commonly affects the end of the small intestine (the ileum) and the beginning of the large intestine (the colon).

kids first aid

Crohn’s disease can occur at any age, but it’s more commonly diagnosed in teenagers and young adults. Both men and women can develop Crohn’s, and it affects people of all ethnic groups.

sore tummy, crohn's disease diagnosis
Crohn’s disease is an auto immune disease and can cause symptoms such as diarrhoea, stomach cramping, fever and weight loss.

How do you diagnose Crohn’s disease?

How is Crohn’s disease diagnosed?

Crohn’s disease can be challenging to diagnose because its symptoms are similar to other intestinal disorders such as Ulcerative Colitis or Irritable Bowel Syndrome.

Doctors typically use a combination of physical exams, lab tests such as stool tests, blood tests and tissue samples, endoscopic procedures (like a colonoscopy), and imaging studies (like CT or MRI) to confirm the diagnosis.

What is an auto immune disease?

An autoimmune disease is when the body’s immune system mistakenly attacks and damages its own tissues. Normally, the immune system can differentiate between foreign cells and the body’s own cells.

However, in autoimmune diseases, the immune system erroneously identifies certain parts of the body as foreign, leading to a targeted immune response against those tissues.

There are more than 80 different types of autoimmune diseases. Some of the more common ones include:

  • Rheumatoid arthritis: Affects the joints.
  • Systemic lupus erythematosus (SLE or lupus)
  • Multiple sclerosis: Targets the protective covering of nerve cells.
  • Type 1 diabetes: Affects the pancreas’ insulin-producing cells.
  • Hashimoto’s thyroiditis: Targets the thyroid gland.
  • Grave’s disease: Also targets the thyroid gland but causes overproduction of thyroid hormone.
  • Inflammatory bowel diseases (e.g., Crohn disease, ulcerative colitis): Affects the gastrointestinal tract.

What causes Crohn’s disease?

The exact cause of Crohn’s disease is actually not known. It’s believed to result from an interplay of several factors:

  1. Immune system dysfunction: Some theories suggest that a virus or bacterium might trigger Crohn’s disease. Instead of attacking the foreign substances, the immune system starts attacking the cells in the digestive tract.
  2. Hereditary: Crohn’s is more common in people who have family members with the disease. Therefore, genes can play a role in making individuals more susceptible.
  3. Environmental factors: Some factors, such as a high-fat diet or smoking, may increase the risk of developing Crohn’s disease or exacerbate its symptoms, but it is NOT said to be a cause, as such.
crohn's, toilet paper
There are many treatments available for Crohn’s disease – I’m currently trying to find the right medication that will work for me.

Is there a cure for Crohn’s disease?

There are no known cures for Crohn’s disease. However, there are many treatments these days that can reduce difficult symptoms and even result in long-term remission for sufferers. Treatment typically involves drug therapy or, in certain cases, surgery.

There is a lot of research going into finding a cure for Crohn’s disease and the Crohn’s and Colitis foundation take donations as they continue working to cure Crohn’s disease.

What are the common symptoms of Crohn’s disease?

Symptoms of Crohn’s disease can vary quite widely from mild to severe and may include some or all the following:

  • Severe diarrhea, and frequent bowel motions
  • Abdominal pain and cramping
  • Blood in your stool
  • Ulcers (can occur anywhere from the mouth to the anus)
  • Reduced appetite and weight loss
  • Fatigue
  • Fever
  • In severe Crohn’s disease cases, complications can occur, such as fistulas (abnormal connections between the bowel and other structures), abscesses, bowel obstructions, and malnutrition.

Do people with Crohn’s disease need to change their diet?

My gastroenterologist has been very specific in saying that massive changes to the diet and exclusions of any particular food groups is NOT necessary.

He explained that Crohn’s and UC (Ulcerative Colitis) are not really caused by eating any certain types of food and that ideally, I need to be consuming a wide variety of healthy foods from all different food groups, but that I should probably be avoiding any foods that are highly processed, that can sometimes exacerbate symptoms of Crohn’s and UC, rather than causing the symptoms.

Highly processed foods can include:

  • White bread, white rice, white sugar
  • Any packaged snacks with high salt and sugar content
  • Biscuits, cakes, muffins, chips or chocolate
  • Foods that are deep fried
  • Ice cream or frozen desserts
  • Sugary drinks

My GI (gastroenterologist) also suggested that it wouldn’t be a bad idea if I go to see a dietician who can help me with some general guidance for a healthy gut diet, but he also mentioned that I didn’t need to make any extreme changes and that he had come across some dieticians that can tend to be a little extreme with their views, opinions and suggestions, which he didn’t agree with.

He encouraged me to keep a food diary to keep track of which foods may be triggering symptoms and also encouraged me to eat a wide variety of foods with different vitamins and nutrients.

Some people with Crohn’s disease or UC may need to take nutritional supplements to avoid vitamin and mineral deficiencies or malnutrition, which can occur due to malabsorption.

eBusiness Institute Banner Generic
sore stomach, crohn's disease
Crohn’s disease doesn’t necessarily mean a huge diet change, but it’s usually a good idea to avoid foods that are highly processed as they can make symptoms worse.

How is it treated?

While there’s no cure for Crohn’s disease, treatments can significantly reduce its symptoms and even bring about long-term remission. Treatment strategies include:

  • Anti-inflammatory drugs like aminosalicylates and corticosteroids.
  • Immune system suppressors that target the immune response causing the inflammation.
  • Antibiotics to address any infections or complications.
  • Biologic therapies, which target specific proteins in the immune system.
  • Surgery, in cases where medication isn’t effective or complications arise.

What was my experience?

I was diagnosed with proctitis several years ago, which is a form of inflammatory bowel disease, and for which I had seen a gastroenterologist and was taking medication. This was kept under control for years without any issues.

In May and June of 2023, I began experiencing more concerning symptoms.

My symptoms began appearing slowly, and became worse very quickly. The first signs and symptoms I experienced were:

sharesight
  • More frequent (loose) bowel motions
  • Blood in stools
  • Severe stomach cramping (very similar to labour contractions)

I went to the GP and was encouraged to stick to a bland diet while some pathology tests were performed, in case it was a reaction or an infection resulting from food poisoning. So, for 3 weeks I ate plain rice, apple sauce, plain crackers, chicken, bananas and pumpkin. And that’s it.

I was not seeing any improvement in symptoms, in fact things were worsening to the point where I could no longer go to work. This frightened me a lot as I currently work as a casual primary school teacher, as well as doing some contract work at home on website management. I had lost earnings, and as a single mum, I had to continue parenting, while ensuring I was close to a toilet at all times, and I had painkillers available. I couldn’t go to do grocery shopping in case I needed to abandon the trolley to run to a toilet, and I found it very difficult to cook meals and run my son around to his appointments and after-school activities. What I will say here though – thank GOODNESS I had a decent Emergency Fund saved, to cover my lost earnings during that time.

All my pathology tests came back negative to infections, but my calprotectin tests came back with extreme readings – (normal range is said to be between 50-200 micrograms per milligram, and my result was 1500). My GI asked me to see him immediately and rushed me in for an urgent colonoscopy the next day.

tummy ache, crohn's disease diagnosis
Crohn’s disease can affect people of any age – but is more commonly diagnosed in teenagers and young adults.

The colonoscopy revealed a lot of inflammation in my bowel and my GI diagnosed me with Crohn’s disease. He instructed me to start on prednisone steroids, which usually act quickly to reduce inflammation, and started me on a new drug – Azathioprine. He said it may take a while to take effect, and so I would need to slowly wean myself off the prednisone.

Once I was off the prednisone entirely, my symptoms started returning again, meaning the Azathioprine was not actually working. I was reluctant to stay on the Azathioprine anyway, as my GI said that drug often leaves patients very vulnerable to skin cancers such as BCCs and SCCs. This was something that concerned me greatly, as I have already had 2 melanomas removed. You can read about my experience with melanomas in my article HERE.

So, currently, I have just been approved for a drug called Stelara, and I am waiting to go to the hospital for my first infusion of Stelara. Following this infusion, I will need to administer this myself through a needle in my stomach every 2 months at home. I have my fingers crossed this drug will actually work, so I can get off the prednisone once again!

Summary

A Crohn’s disease diagnosis was difficult to come to terms with, but I’m finding the more I educate myself about the condition, and take steps to live the healthiest lifestyle I can, the more I can accept this diagnosis and take one day at a time.

It’s easy to become overwhelmed sometimes, particularly when symptoms are not under control, but I’m showing trust and confidence in my GI who assures me we will find the right medication that will work for me.

I have learned a lot about Crohn’s and Ulcerative Colitis so far, but I know there is also a lot more I need to learn.

I would love to hear from anyone else living with this auto immune disease, and let me know what has worked well for you!

Leave a Reply

Your email address will not be published. Required fields are marked *