When you’re diagnosed with a chronic illness, you’re suddenly thrown into this crazy world filled with complex words you might never have heard of before. You’ll suddenly become an expert in your own health.
Today I wanted to help you break down some of the terminologies which might be being thrown your way. Hopefully it will help you whilst you’re being diagnosed and through treatments!
A – anaemia
Anaemia means you have a reduced number of red blood cells. Red blood cells carry oxygen around your bloodstream. Symptoms of anaemia can be breathlessness and extreme fatigue.
Anaemia is a common symptom of IBD for many reasons. IBD can cause you to stop absorbing iron as easily plus there’s a chance you’re losing blood if you’re in a flare-up.
Treatment for anaemia can come in many forms. You can have iron tablets, liquid iron (which tastes disgusting but does the job) and then iron transfusions.
Having experienced all three, my personal favourite (if you can have a favourite) is the transfusions as they’re the easiest for me. Treatment does take a little time to work so often it’s a minimum of two weeks before you’ll start to feel better.
I’ve written about my experience with anaemia a few years ago here
B – biological drugs
Biological drugs are a type of treatment for IBD. They’re often used if other treatments aren’t working as they’re strong and intense drugs.
Biologic medicines are produced by biological rather than chemical processes. Living organisms, such as living cells, produce the active substance which is made of proteins.
You can read my experience with biological drugs here.
C – Colostomy
A colostomy is a type of stoma. With a colostomy, there’s an opening from your large bowel where it is brought to the surface of your abdomen and poo is collected into your stoma bag.
Unlike an ileostomy, the output from a colostomy tends to be more solid and often resembles a traditional stool.
Head on over to Colostomy UK’s website for more support and information about colostomies.
D – dehydration
Dehydration is something you really have to be careful of with IBD and life with a stoma.
This can occur if you lose too much liquid from the body through vomiting or diarrhoea, are not drinking enough fluids, or have had your large intestine removed.
It can cause headaches, tiredness and dizziness and leave you feeling pretty rubbish.
It’s really dangerous to leave yourself dehydrated but I have some blog posts here which will hopefully help you.
E – enema’s
Enema’s are a liquid or foam inserted into the large bowel through the anus.
They can be used to locally treat inflammation of your bowel or to clear your bowel before procedures such as colonoscopies and surgery.
They’re not the most pleasant of things but they do the job!
F – faecal calprotectin
Faecal calprotectin is a test which the doctors can do on your poo samples to test for inflammation.
Increased levels of these proteins can be a sign of active inflammation.
It’s a really simple test, you just have to put a poo sample into a test tube.
G – gastroenterologist
Gastroenterologists are your IBD doctors. It can commonly be shortened to gastro or GI
H – haemoglobin
Haemoglobin is in your red blood cells which carry oxygen around the body.
I – ileostomy
There are so many I’s in IBD but for today I thought I’d go with ileostomy as this is something I have!
An ileostomy is where your small bowel is brought to the surface of your abdomen.
Unlike a colostomy, an ileostomy’s output is looser and more frequent as it’s your small bowel rather than your large.
You can read all about life with an ileostomy in these blog posts
J – j-pouch
A j pouch is an artificial pouch made out of your own small intestine which is connected to your rectum. You go to the toilet ‘normally’ but the consistency and frequency would be the same as when you have an ileostomy.
You can read about why I chose not to have a j-pouch here.
K – keyhole surgery
Keyhole surgery is a less invasive surgical procedure where surgeons use a laparoscope.
Instead of having a large scar down your abdomen, you have small incisions around your abdomen.
I had my surgery this way and it is meant to help with healing times!
It’s also referred to as laparoscopy
L – large intestine
Your large intestine, or large bowel is where nutrients are absorbed and faecal matter is formed. It includes the colon, rectum and anal canal.
M – malabsorption
Malabsorption is the failure to fully absorb the nutrients in food through the intestines. If untreated, it can lead to malnutrition.
It can be caused by inflammation, which makes it harder for the body to absorb nutrients, vitamins and iron.
N – NSAIDs (non-steroidal anti-inflammatory drugs)
NSAIDs are a family of painkillers which include ibuprofen and diclofenac.
However, NSAIDs can make IBD worse so it’s important to consult with your doctors before thinking about taking them.
Instead of ibuprofen, opt for paracetamol or asprin.
O – obstruction
Obstructions can be a common issue with IBD patients.
They can be caused for a number of reasons including strictures and adhesions.
Strictures can be caused because of the continual damage to the bowel caused by inflammation. When this happens, certain cells make special proteins that repair the damage. These special proteins are called collagen and fibronectin. With IBD, the repair process happens continually. Over time, the collagen and fibronectin build up, making a section of the digestive tract too narrow.
Adhesions are tissue formed after surgery. After intestinal surgery, an adhesion may form between the intestine and abdominal wall.These can move and then cause an obstruction.
P – proctocolectomy
A proctocolectomy is where you have your whole large bowel and anus removed. Patients commonly refer to it as barbie butt surgery as you effectively have the same bum as barbie because there’s no anus.
You can read my recovery diary from my proctocolectomy here.
Q – quality of life
Finding quality to your life is so important when you have IBD. That’s why I focus so much on wellness with a chronic illness on this blog.
For me, having my bag has been a huge improvement on my quality of life because I can actually go out and live my life!
R – remission
Remission is something we all aim for when we have a chronic life-long disease.
Remission is where you’re free of active disease, with few or no symptoms.
S – sigmoidoscopy
Sigmoidoscopies are similar to a colonoscopy however you only have the rectum and lower part of your colon looked at.
I’m not going to lie, they’re not the most comfortable thing to have especially if you have active disease.
T – topical treatment
Topical treatment is where you have targeted treatment to an area of the digestive system rather than a more general treatment (like steroids).
In IBD this usually refers to the use of suppositories and enemas to treat inflammation in the rectum or the lower section of the colon.
U – uveitis
Uveitis is inflammation of the eye which some IBD patients can have.
It’s not overly common but if you experience it, you must go to an eye doctor or A&E as soon as possible.
V – vitamin D
Vitamin D is another deficiency which IBD patients can experience.
It is essential for bone health and is essential for everyone, especially IBD patients because we are more susceptible to bone conditions such as osteoporosis
W – weight loss
A common symptom of IBD is weight loss. Weight loss can occur because you’re not absorbing essential vitamins and nutrients. It can be really hard to maintain a healthy weight with IBD which can be very frustrating.
I really recommend trying to see a dietitian who can help you attempt to get to a healthy weight.
X – x-ray
X-ray’s are a great, non-invasive way for doctors to get an idea of what’s going on inside.
There isn’t really much to say about x-ray’s, to be honest, but they’re not too bad!
Y – Your Health
At the end of the day, this is your health. So take charge, learn and don’t be afraid to demand things from your medical professionals.
You will quickly become tuned in to your body and know when something’s not right so make sure you keep going back to your doctors!
Z – zzzzz
Z is for zzzz aka SLEEP. IBD is a tiring disease and can leave you feeling wiped out. Medications can also leave you feeling drained. From fatigue to brain fog, it’s tough so don’t be hard on yourself!
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