What people with IBD should know

I am often asked, “What would you tell someone recently diagnosed with IBD?” So, this is what I think you should know! Look out for clickable links in this blog, leading to more detailed information! For many, a definitive diagnosis is a massive relief after a long period of being unwell. This does not mean that acceptance is easy, after all, you have just been diagnosed with a chronic disease which has no cure. Do NOT panic, we’ve got this, life is not over! It is worth pointing out that no two IBD patients’ lives are the same. The disease does not always manifest in the same way, and the fact that a treatment works for one person does not mean it will work for another. This makes IBD notoriously difficult to treat. That said, some IBD patients may have one flare, find the right medication straight away and never have another, and that is fantastic! For the rest of us, being diagnosed with Crohn’s Disease or Ulcerative Colitis may mean some lifestyle changes and som

Do you know how many of your health issues are actually IBD related?

The list of extraintestinal manifestations of Inflammatory Bowel Disease is extensive. Those newly diagnosed in particular, could easily not realise which of their other conditions are actually related to their IBD.

I have been guilty multiple times of linking things to IBD when I have been unwell, which have turned out to be completely unrelated, and I should in fact have sought help for sooner. Equally, I have not linked things to IBD (or the medications I am taking to treat it) and been completely off the mark there too!
I like a list, and I feel this is the perfect time for numerous lists, for simplicity and clarity. Please remember I am not a doctor and this is by no means a complete list. I have no doubt some of you will spot something I have missed.

Primary symptoms of Inflammatory Bowel Disease:
Stomach cramps / spasms
Fever
Diarrhoea and / or constipation
Bloody stool
Decrease in appetite / Weight loss
Increased wind (which is actually a sign of the intestine being inflamed)
Tenesmus

Secondary symptoms and other autoimmune conditions related to Inflammatory Bowel Disease:
Fatigue
Strictures
Nutritional deficiencies
Fistulas
Anaemia
Skin tags
Anal fissures
Malabsorption / Malnutrition
Blood clots (including DVT)
Thinning / weakened bones
Depression
Anxiety
Joints (pain, swelling and inflammation)
·         Arthralgia
·         Peripheral Arthritis
·         Axial Arthritis / Spondylitis
·         Ankylosing Spondylitis
Oral
·         Aphthous ulcers
·         Canker sores
·         Herpetiform ulcers
·         Dental cavities
·         Periodontitis
Eyes
·         Episcleritis
·         Scleritis
·         Uveitis / iritis
·         Keratopathy
Skin
·         Erhthema nodosum
·         Psoriasis
·         Pyoderma gangrenosum
·         Rosacea
·         Acrodermatitis enteropathica
·         Pyoderma vegetans
·         Vasculitis
·         Vitiligo
·         Clubbing
·         Sweet’s syndrome
·         Eczema
·         Epidermolysis bullosa acquisita
Kidneys
·         Kidney stones
·         Enterovesical fistulas
·         Ureteral obstruction
·         Uric acid stones
·         Hydronephrosis
Liver
·         Hepatic Steatosis / Fatty Liver Disease
·         Cholelithiasis
·         Primary Sclerosing Cholangitis
·         Pericholangitis
·         Cryptogenic Cirrhosis
·         Autoimmune hepatitis
·         Gallstones
Rheumatoid arthritis
Fibromyalgia

Side effects of medications include but are not limited to:
Acne
Joint pain
Thinning of the skin
Increases susceptibility to infection
Fatigue
Hair loss
Insomnia
Thinning / weakened bones
Nausea
Increased risk of lymphoma and skin cancer

It’s always worth seeking advice from a GP if a new health issue occurs as even if these are IBD related, they can be treated with different medications.

I hope I made my point here that Inflammatory Bowel Disease is MUCH MORE than a disease only affecting the intestines..