My IBD diagnosis

By Dingaz82

2 min read

I've been doing a lot of reading about IBD since being diagnosed last month and it really is disturbing the amount of people who have been told there's nothing wrong with them, misdiagnosed, turned away from the ED and told to go home and rest. Doctors telling people it's all in their heads. Even GI's not wanting to have a bar of it.

I must have been one of the lucky ones

I work 1 1/2hr flight from the nearest city, or a 7hr car ride over WA outback roads to the closest regional hospital, so getting to an ED quickly is not an option. I fly to work on a Thursday and there's no more plane's until Monday.

When I first thought something was wrong was on one of those fly in Thursdays. I felt constipated and extremely tired, I went to the site medic who gave me some laxatives and sent me back to my site accommodation to rest. I ended up staying in my room feeling worse and worse till Monday morning when I could back on a plane. When I arrived home, I went straight to the ED and after waiting a lengthy amount of time I was sent home and told to take lactulose. I asked the doctor if we could do a scan to see if constipation was the problem, she was reluctant but agreed to an x-ray. The x-ray showed I was backed up three ways to Thursday which affirmed to the dr I was constipated. 2 trips to my GP later and he put the constipation down to hemorrhoids.

I've never been so sick in my life

I was crook. I had gone from being reasonably active to couch bound. I hadn't been well enough to go back to work for a month so my partner "politely" suggested a trip back to the ED. Being a pig headed stubborn "bloke" I said nah I'll be ok. The next day I was in the car and off to the hospital, I couldn't take it anymore.

Anyway, long story short, I was admitted that night, CT scan (found major inflammation in my bowel) and bloods done. The next day I had flexible sigmoidoscopy done by the resident GI and was diagnosed with IBD by 3pm. I started on IV steroids and antibiotics straight away. I feel really sorry for those who struggle through for months/years, just trying to survive without a diagnosis.

Like I said, I'm one of the lucky ones.

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stacihash Member
Yep, I struggled for 10 years. GP told me I had IBS and just needed to add fiber to my diet, then went through infertility and early menopause. I was checked for RA & lupus because of my constant joint pain (negative). Then I was diagnosed with osteopenia. When my abdominal pain got worse, my GP thought it was inflammation in my rib cartilage (from exercise). Then this last year they thought it was my gallbladder but every test showed that I was fine. Over the holidays, I was bed bound for two weeks and ended up driving myself to the ER where I was told the beds were for patients who had life threatening illness, they gave me a bag of fluids and sent me on my way. I finally talked my GP into referring me to a GI specialist. He walked in, listened to my symptoms, pushed on my abdomin and less than 10 minutes later diagnosed me with Crohn’s. A colonoscopy verified this and I was placed on immediate Prednisone treatment and will start Humira injections soon. So frustrated that it took so long but glad that I finally got an answer!
1. thedancingcrohnie Moderator & Contributor
 Oh gosh, 10 years is a long time to not have a proper diagnosis. Sorry it took so long but glad you finally have answers. I hope when you start Humira you begin to heal and improve. Best of luck to you always, Elizabeth (team member)
2. Sahara Fleetwood-Beresford Moderator & Contributor
 <inline-mention username="stacihash" user-id="4581610"/> I am glad you've got there in the end! ~ Sahara (Team member)
thedancingcrohnie Moderator & Contributor
Thank you for sharing your story with the community. I'm sorry you were diagnosed but if there is a silver lining, like you mentioned, at least it was quick and you can now focus on proper treatment. Are you on any new meds? Also, I found for me at least, change in diet is very helpful. Sending hugs your way, Elizabeth (team member)
Sahara Fleetwood-Beresford Moderator & Contributor
Thanks for sharing your diagnosis story <inline-mention username="Dingaz82" user-id="4562650"/>! You're right. It's awful that it happens so often. For women, "hormones" are often blamed. Suggestions such as depression, stress, and eating disorders are pretty common too! I even know quite a few people who were diagnosed with Appendicitis. I have always said I feel like I was lucky too, because my diagnosis was quick. That said, it progressed so quickly that I went from first symptoms to surgery in under 3 weeks, which is obviously not so lucky! Then, at many other points after that, I've felt in a very similar situation, where I am telling my team that something is wrong and they're not taking it seriously. It's bad that this is a situation that many of us are familiar with! ~ Sahara (team member)