Symptoms of IBD That Go Beyond the Gut

Hello all!

I hope you’re keeping well and safe. This month marks 5 years since my stoma surgery so, I’d like to use this post to highlight how symptoms of IBD can affect far more than just your gastrointestinal tract. These symptoms can sometimes be pretty impactful but, often forgotten.

I’ve suffered from symptoms of IBD for as long as I can recall. Starting off with skin issues, eye irritation, allergic appearing reactions, tiredness, mouth ulcers and reoccurring infections. These odd symptoms were disregarded for years soon developing into more noticeable symptoms such as low immunity, extreme fatigue, joint issues, hair loss, anaemia and weight loss (not to mention the more commonly known symptoms of visiting the toilet 20+ times a day). I was eventually diagnosed with Ulcerative Colitis, aged 13.

Although IBD is commonly linked to pooing/abnormal bowel habits – it can impact the body in many more ways than visiting the toilet. In fact, I actually know some people with IBD that haven’t ever experienced unusual bowel habits but have experienced many other symptoms in extreme.

*Now, it’s important to stress that each individual’s circumstances, experiences and symptoms are so extremely different. No two people with IBD have the same experiences – these are just some of the other symptoms that I’ve personally experienced. It’s important to always seek individualised medical advice from a healthcare professional with regards to your own body/experiences.

Symptoms I experienced;

My first, what I can now call symptom, of IBD were random rashes all over my skin. As a family, we started making simple changes such as changing washing powder and shower gel to try and put a finger on what was causing them. However, they continued. We then tried avoiding visiting certain places or going on certain walks with little success. I began seeing a paediatrician who tested and treated me for allergies for years… needless to say, with little success.

‘up to 15% of people with IBD will experience skin problems’

I also suffered (and continue to from time to time when I’m run down) with random bruising all over my body. I remember getting taken aside from my parents time after time when visiting the Dr’s to question this bruising and if anybody at home was inflicting it. Of course, these safety measures are necessary but, there wasn’t anything anyone could find to help it. It made me pretty conscious at times and I’d avoid having them on show in school whenever possible.

A couple of times a month, some of my fingers would get swollen and sore and I’d get pussy welks on my finger beds that often I’d have to go to the doctors to have drained and treated with antibiotics. Not only were these extremely painful to the point that they’d keep me up at night throbbing but, something again that I found extremely embarrassing and difficult to hide.

My eyes would get bloodshot, dry, sore and itchy to the point that I’d have to lie with them shut and put cold flannels over them. Again, Dr’s, thought this symptom tied in with the allergy theory.

I used to get inflammation up my nose which would get very sore and bleed. I was treated with various creams that I’d have to put on a cotton bud and spread up my nostrils for a long time.

Mouth ulcers were a big one for me! Although these are sometimes more commonly linked to IBD – nobody picked up on them in my case. If you suffer with them too, you’ll know the underrated, frustrating and crippling pain they cause when they grace your mouth in mass. Even now, when I get one or two crop up I my mouth, I know it’s a sign to slow down or take a day off before I exhaust myself.

Fatigue has been a pretty prominent symptom for me over the years. I was always pretty studious and wasn’t one to misbehave in school but, I started becoming so physically tired that I couldn’t stay awake as much as I tried to fight it. I began falling asleep in lessons and even fell asleep in one of my exams! This was a super difficult one for me to explain (describing the difference between tiredness and fatigue is pretty difficult anyway but, I didn’t know at the time that it was fatigue that was affecting me) – this one really made me doubt myself and begin believing that maybe I was just ‘lazy’ or lacking enthusiasm/concertation.

‘Fatigue can be described as an overwhelming sense of continuing tiredness, lack of energy, or feeling of exhaustion that is not relieved after rest or sleep. It is far more than the ordinary or usual tiredness that ‘normal’ people may feel after being busy or lacking sleep.’

My Advice;

– Try not to ignore subtle symptoms
– Try to see a Dr while the symptoms are bad or, take photographs of them to take with you to show at an appointment
– Don’t do anything irrational like following someones advice online or Dr.Google to try and treat symptoms, always follow reputable medical advice
– Try to learn and accept that with some of them, it is, unfortunately, the case of sitting them out

I hope this helps in some way whether that’s by teaching you a little or, perhaps helping you feel a little less alone in your experiences.

Amber x

*I’d like to stress again, that these are just a few of my own symptoms / experiences and that each individuals are so so different. If you are concerned, you should always seek your own individualised, reputable medical advice.

*All citations are taken from reputable sources such as Crohn’s & Colitis UK

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