This blog is based on my experience, aiming to edu-kate people who are experiencing similar ongoing gut related issues to be tested for Crohn’s Disease. Early diagnosis may reduce the likelihood of surgery.
April 2015 – New Job, New Town – Crohn’s Not Diagnosed
After a few days moving to Far North Queensland and starting my new job I experienced symptoms:
- Sweats and Fevers
As I was living in the Single Person Village (mining town camp) until my housing was ready, I believed it was just food poisoning from the camp food. I didn’t go to the doctors, I thought it would just pass. It did, after 5 days.
July 2015 – Bramwell Rodeo Camping Trip – Crohn’s Not Diagnosed
During and after a 2 night camping trip to Bramwell Rodeo (in Far North Queensland), I experienced more symptoms:
- Sweats and Fevers
- Severe weightloss (6kg in 9 days).
I went to the doctors and was prescribed with antibiotics as it was thought that I had contracted Giardia. I provided a stool sample to get tested. The symptoms persisted after the first course of antibiotics and the stool sample returned negative. After returning to the doctors I was prescribed with another course of antibiotics. The GP was still convinced it was Giardia as it was going around town. After the second course of antibiotics my symptoms reduced so no further tests were undertaken.
July 2015 – September 2015 – Continual Gut Problems – Crohn’s Not Diagnosed
After my “giardia episode” I continually had cramps (severe enough to disrupt my sleep), my appetite disappeared as it hurt to eat, a number of diarrhoea episodes daily and fatigue. During these months I was training for the Sunshine Coast Half Ironman, in September. I returned to the doctors and it was believed that my body was just recovering from “giardia” and I may experience IBS symptoms for a few months.
With that knowledge I continued to push through and train for my half ironman despite struggling physically. I completed the half ironman (walking most of the run before heading to the medical tent). I was not well.
The next few days I was very sick and I thought it was a result of pushing myself too hard at the event.
October 2015 – Trip to the tip of Queensland, Cape York – Crohn’s Diagnosed
After returning from a trip to the northern most point of Queensland I collapsed in my bathroom after a diarrhoea episode. I immediately went to the doctors where bloods and a stool sample were taken.
My Calprotectin was extremely high (the highest the Weipa Hospital had seen) it should be under 50 – mine was 1250. I was fortunate that a Gastroenterologist was coming to Weipa that week (a Gastro visits Weipa every 3months).
That week I had my first colonoscopy.
- Inflammation in the caecum and at the ileocaecal valve.
- Stricture at the ileocaecal valve (scope could not see my small intestines).
The biopsy confirmed I had Crohn’s Disease. I was prescribed with steroids in hope that it would reduce my inflammation and that it was localised.
However, symptoms persisted even on steroids and I was required to have an MRI so they could see my small intestines.
It was confirmed that the inflammation had been there too long and therefore had scarred (stricture) in my large and small intestines. I required urgent surgery to remove this section.
January 2016 – Right Hemi-Colectomy – Bowel Surgery
I required a Right Colectomy, removing approx. 45cm of my large/small intestine, including the ileocecal valve (along with my appendix).
Stay tuned for my next blog post on detailing my first time surgery and hospital experience.
4 thoughts on “Crohn’s Disease – Diagnosis Journey”
I want to say thank you for sharing your story. I have nothing for empathy for you and remember nights where I was in the hospital crying, as I too have Crohn’s Disease. Have you tried taking all starches and all processed foods out of your diet? One day when I was in the hospital I said enough was enough and looked up natural ways to make myself better…because, as is your case, steroids weren’t helping. In fact, STEROIDS MADE ME MORE SICK. I got to where steroids eventually started making me have pancreatitis and gastritis on top of the Crohn’s without treating anything. The dieting worked for me and I haven’t been on medicine for almost two years. That’s not to say I don’t cheat my diet a lot, but my stress has went down as well. Please feel free to reach out to me any time you want.
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but* empathy…sorry for any other grammatical errors. I typed it up quick on my phone.
Thank you so much for the comment Max. I am so happy to hear that you haven’t been on medicine for two years. That’s fantastic. I am currently going through the Anti-MAP Protocol treatment. So far so good.
I did trial cutting out all starches for 8 weeks, however this proved to not be any more beneficial than consuming the starches. For me it was trial and error for what works for me. I am completely dairy free and do not eat red meat and yes a clean diet (next to none processed foods).
So glad you’ve found a diet that works for you. Look forward to more of your blog posts.
Keep lifting and staying crohn’s free 🙂
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Thank you. You too. I hope all is going well right now.