My Behcet’s Disease Diagnosis – Self Awareness Is Key

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I’m in full support of raising awareness for inflammatory bowel diseases (IBD). Maybe if I had known more about IBD, I could have received treatment quicker.

My diagnosis of ulcerative colitis was indeterminate and only clear after my emergency subtotal colectomy with end ileostomy. I remember it all vividly.

That time was filled with pain, discomfort and consistent upset.

Everything hurt, noise was painful, things echoed through my body from head to toe ringing out in agony. Moving, functioning and the constant trips to the toilet were just the absolute worst thing to deal with, especially when I didn’t actually realise I had a medical condition and thought it was ‘normal’. I was living with pain and discomfort as a normality – no one should have to go through that!

We are of course all different, but when I read other stories of IBD pain it completely resonates.

I can’t even begin to see now how I was so ‘fully functional’ working in my relatively demanding job, travelling with work, driving with work, playing house, keeping up appearances – no wonder it took its toll on me mentally and physically!

I am now on the other side of that auto immune disease, but dealing with another, and you know what? I still find it hard to tell the doctors and nurses when something hurts, has changed or when something’s not quite right. I also find it difficult to rate how I am feeling or to answer, “What’s your pain level today?” or even, “How did you feel about getting up today?” because I’m the kind of person who gets up and gets on with it, and even when I’m a 9 out of 10 I’m still at my desk showing people I can and will be capable!

So in the spirit of sharing and awareness here’s a little about my new experience with disease… I have recently been diagnosed with Behcet’s disease

I’m now getting to grips with understanding what this new diagnosis means for me, my life and all the things that could happen to and are happening to my body. What I can say is that it’s great to be able to attribute why I have particular pains and flares in the places I do, and that they aren’t in my head. It’s because I am a bit different, special you might say… even perhaps a mystery!

A delay in the diagnosis of Behcet’s disease is common. Knowing what to look for is key in taking control, however it has so many similarities to Crohn’s and colitis so it can be hard to pinpoint. It can take an average of four years to correctly diagnose due to its similarities with other autoimmune disorders.

The most common signs and symptoms of Behcet’s disease are:

Eye Inflammation

Occurs in more than 50% of patients and can result in blurry vision, sensitivity to light, pain and redness. It can unfortunately lead to blindness. I don’t get this and I’m grateful, so fingers crossed I’m in the other 50%!

Mouth Sores

One of the most common and earliest signs. They look like canker sores on the lips, tongue, cheek lining and the roof of the mouth. I have always had these, to be honest I don’t remember a time when I didn’t have them. I tend to have around 12-15 of them at one time and the pain can vary. My high pain threshold can be a saviour here, but sometimes when they are really bad I can’t talk, eat, or sleep and they give me debilitating anxiety.

Skin Sores/Lesions

These occur in 60-90% of patients. They can look like red bumps resembling acne. Cropping up anywhere on the skin, or even as red tender nodules on the legs, arm face and neck. Yes, I get these in lots of different formations and they mainly crop up on my arms and legs. I have also found that insect bites can cause lesions too – severe lesions in fact. The last insect bite I had turned out so nasty it became cellulitis. The swelling was so painful and hard, the blister had to be drained, and I was admitted into hospital for IV medication – quite an ordeal!

Joint Pain and Swelling

Arthritis or spondylitis affects 50% of patients. It can affect an individual or multiple joint, causing pain, swelling and stiffness. I find this is one of the worst pains, having never really had joint pain before, it almost feels like I am swollen inside and everything’s sort of throbbing – especially in my back and between my shoulders. I also experience swelling in my ankles, so much so that they become fixed and walking becomes impossible! Thankfully I can work from home on these days!

Genital Sores

Appear in about 75% of patients. They tend to be larger and deeper than oral sores and often leave considerable scarring. Last and by no means least this one is just uncomfortable and well, when they’re bad they’re bad and nothing can make the pain go away, other times they are small and unnoticeable more like little pimples (I prefer dealing with the latter of course!).

If you experience any of these symptoms be sure to speak with your healthcare practitioner. Living with a chronic illness can be life changing – make sure you have all the support you need. 

“Getting a diagnosis of IBD was difficult, getting a diagnosis of Behcet’s disease was unexpected.” – Sam Melling

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We know it can be hard explaining your symptoms to your health care professional team. That’s why we’ve developed this free downloadable Skin Health Tool, to help make these conversations easier in relation to the condition of the skin around your stoma.

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by Sam Melling

Sam Melling

About the author

AKA TheModernBagLady, I enjoy Tapas Tuesdays, Fizz Thursdays and Fun time Fridays. When I'm not my sensible (using the term very loosely) office alter ego, I can be found seeking new adventures, wondering in woodlands, flirting with festivals and lightly laughing my way through the trials and tribulations that any “bag lady” faces.

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