Sunday 19 May 2024 is world IBD day,
To mark this important day I thought I would talk about IBD, the main types, symptoms, diagnosis and treatments.
IBD stands for Inflammatory Bowel Disease, it is a group of conditions that cause inflammation and damage to the digestive system. There are a few different types of IBD with the main two being Crohn’s disease and Ulcerative Colitis . The exact cause of Crohn’s disease is unknown, but it is thought that there is an auto-immune or auto-inflammatory component. One train of thought is that the immune system reacts to something in the gut – possibly bacteria- and starts to attack it, causing damage, research into the causes and mechanisms of IBD is currently on going and new theories are coming out all the time.
Crohns disease
Crohn’s disease can impact anywhere in the digestive tract from the mouth to the anus, it causes inflammation, ulceration, scarring and damage to all layers of the bowel, and it can cause complications such as fistulas which are abnormal tracts between one part of the body and another, such as between the bowel wall and the abdominal wall. In Crohn’s disease the damage can be sporadic, there can be patches of inflammation and patches of healthy tissue, which means that if you looked at only a small section of tissue, you might miss the disease and think it is not present.
Ulcerative colitis
Ulcerative Colitis (UC) impacts the large intestine (known as the Colon) and the rectum. Small ulcers develop on the lining of the colon which can bleed and produce pus. In ulcerative colitis the inflammation is continuous, and it only affects the inner most lining of the colon.
Indeterminate colitis
In about 10% of people with IBD, features of both UC and Crohn’s are present, making it impossible to distinguish between the two types of IBD, in these patients a diagnosis of inderminate colitis is made.
Symptoms
Symptoms vary from person to person and even between different flare ups in the same person. The most well known and more common symptoms include
- Stomach pain
- Nausea
- Vomiting
- Weight loss or weight gain
- Bloating
- Diarrhoea
- Nutrient deficiencies
- Bleeding from the gastrointestinal tract
While these symptoms may seem obvious for a digestive disease, there are other symptoms that may seem less obvious and these include
- Joint pain
- Fatigue
- Eye inflammation
- Mouth ulcers
- Osteoporosis
- Skin issues
Diagnosis
Because the symptoms mimic so many other conditions IBD can be hard to diagnose, unfortunately it often takes people a few years to get a proper diagnosis . Getting a diagnosis usually starts with speaking to a GP and getting some basic blood tests and a stool sample should be taken to look for blood, inflammation and signs of infection, there may also be a physical examination of your stomach to check for any other signs of issues,
After this, if the GP deems it appropriate, they will refer you to a gastroenterologist which is a specialist in the digestive system who may order further testing including an MRI and/or a colonoscopy or endoscopy. The best way to get a firm diagnosis is to get a biopsy of the intestine which can be done during a colonoscopy. The biopsy can help determine if you have Crohn’s or UC or if there is something else going on. Sometimes these tests will come back clear despite continuing symptoms. If this is the case, you can ask for other testing such as a barium meal follow through or a white cell scan which is a specialist scan where the white blood cells are tagged with radiation and a special scanner is used to follow them. If the white cells are seen to be concentrating in a specific area it can indicate inflammation which can be used to help with diagnosis.
Whatever tests you have, don’t give up if you are still having symptoms and feeling unwell, it’s important to stand up for yourself and not to let anyone put you off, getting a diagnosis is important for any illness, and its not ok for anyone to be left suffering.
Treatments
There is no cure for IBD, so treatment aims to control the disease and help to improve quality of life by getting symptoms under control.
Steroids
Corticosteroids like prednisolone or budesonide are used during the acute “flare” phase of the illness. A flare up is when the disease is active and causing more symptoms than the day to day baseline and steroids control these flare ups by reducing the inflammation in the digestive tract. Although they are usually very helpful and can get symptoms under control very quickly, steroids are not a long term option as they come with some quite significant risks including bone thinning, mood disturbances and the possibility of steroid dependancy.
Liquid diets
Liquid diets can be used at any age but they are most commonly used in children to give the gut a chance to rest and heal, they can also be used to try to help someone gain weight and nutrition if they have become malnourished as a result of their illness. Liquid diets use a very special form of formula food, which can be partly or fully predigested and may be highly calorific. They are tough to deal with, but they are a very low risk way of treating the inflammation and pain associated with IBD.
5 ASAs ( aminosalicylates)
These drugs have an anti-inflammatory component and they are chemically similar to aspirin, they dampen down the inflammatory process and allow the damaged tissue to heal. They are generally very safe drugs and they are often used as a first line treatment, especially in cases of IBD that aren’t very advanced or severe. The downside is they have limited effectiveness, so they aren’t appropriate for people with advanced or severe disease.
Immune suppressants
Immune suppressants work by calming down the immune system in the hope of stopping the damage to the digestive tract. The downside to immune suppressants is that they leave you more prone to infection and can have some serious side effects including liver problems, it’s important to have regular blood tests before and during treatment.
Biologics
Biologics are medications that work on the immune system and modulate it. Different Biologics work on different parts of the immune system, infliximab and adalimumab for example are both anti-tnf medications. Biologics block the part of the immune system that they are targeted at, with the aim of stopping any further inflammation from occurring. Like immune suppressants, Biologics come with a higher risk of catching infections and difficulty fighting them, they can also come with a higher risk of some types of cancer and they can lead to issues with organs such as the liver. Most Biologics are delivered by infusions or injections, the injections are usually self administered at home by the patient.
Surgery
Sometimes medication isn’t enough to stop the IBD from spreading or causing complications like abscesses and surgery can become necessary. There are a few types of surgeries that may be performed with IBD including bowel resections where a part of the bowel is removed and the healthy ends are joined together, stoma surgery where a part of the bowel is removed and the end is pulled through an opening in the abdomen, abscess lancing and removal and fistula repair surgery.
Worst case scenario
Although thankfully quite rare, people can die or be left with serious life long impacts from IBD and its complications . People with Crohn’s disease may experience a perforated bowel, which is a medical emergency or there may be complications related to surgery done to treat the IBD. People with IBD are more at risk of cancer, and some of the treatments also increase the risk of some cancers such as skin cancers, many of the treatments also reduce the function of the immune system which means patients are more susceptible to infections and may have more difficulty fighting off viruses like Covid and the flu.
This is why we need research for a cure and kinder more reliable treatments. Current treatments are much better than we had even 10 -20 years ago, but they don’t help everyone and they do have the potential to fail, and they all have potentially serious side effects. If you would like to help, just sharing information about IBD can be really helpful, the more people who know about IBD and its signs and symptoms, the better chance we have of getting people diagnosed early and stopping the worst of the damage. Increasing awareness will also increase funding as people will be more aware of the need to fundraise, and doctors becoming more aware will mean people are treated earlier and more efficiently.
Chronic musician 