What is Crohn's Disease?
Crohn's Disease is an Autoimmune Disease and type of Inflammatory Bowel Disease (IBD). Having IBD means your body starts to attack itself, causing swelling, inflammation and ulcers in the GI Tract.
Unlike Ulcerative Colitis, which only affects the large colon, Crohn's Disease can affect any area throughout the GI Tract (from mouth to anus), but mainly affects the small bowel (ileum). Inflammation can develop deep in the bowel wall, causing scarring, strictures and narrowing of the bowel. This can cause extreme abdominal pain and diarrhoea resulting in weight loss, malnutrition and extreme fatigue.
There is no known cure for Crohn's Disease, meaning this condition is managed with Medication, Diet and Lifestyle Changes and in many cases, Surgery. Up to 75% of Crohn's Disease Patients will require surgery at some point throughout their life. Depending on severity of the disease, these surgeries may result in having an ostomy (stoma).
Not to be confused with Irritable Bowel Syndrome (IBS) which does not cause muscle damage, Crohn's Disease can cause severe damage to the GI Tract.
Diagnosing Crohn's Disease
Crohn's Disease can go undiagnosed for many years. This could be as a result of a misdiagnosis from a Health Professional, or a patient delaying having their symptoms checked by their GP. As of 2022 Crohn's & Colitis UK, the UK's Leading Crohn's & Colitis Charity and Support Network, suggests that over half a million people in the UK have IBD (Crohn's Disease or Ulcerative Colitis). This is around 1 in every 123 people in the UK. Health Professionals are becoming more aware of the signs and symptoms of IBD and are able to make diagnosis easier.
After visiting your GP, you will be referred to a Gastroenterologist who specialises in IBD. There is no simple test which can confirm the diagnosis of Crohn's Disease, but combination of a range of different tests.
These Diagnostic tests include:
Colonoscopies (endoscoptoic examination of the colon) - A small camera is inserted in to the rectum and allows the gastroenterolgist to have a clear view of the bowel and it's lining. A Bowel Prep such as MoviPrep will need to be taken before this procedure to ensure the bowel is clear. Small samples of tissues (biopsies) can be taken for laboratory analysis which can help with diagnosis.
MRIs -This involves pictures being taken of the digestive tract at different intervals. A Contrast Medium Drink is taken before this procedure which will highlight the bowels and indicate any areas of concern in the bowels.
Blood Tests - They will test the C-Reactive Protein (CRP) which identifies inflammation in the body. Crohn's Disease can not be detected purely with a Blood Test. However, once Diagnosis is confirmed, your Gastroenterolgist can use this blood test to manage track the CRP Markers for disease activity. Iron Levels, Vitamin B12, Vitamin D and other Vitamins will be tested within these blood tests.
Calprotectin Stool Tests detect inflammation and infection in the bowel. These are commonly used to monitor activity of infection in exisiting Crohn's patients.
What are the symptoms of Crohn's Disease?
The Symptoms of Crohn's Disease can vary from patient to patient. This is due to how many different areas of the GI Tract which can be affected and how the disease affects everyone.
However, most Crohn's Patients report these Main
Diarrhoea - Frequently visiting the bathroom with loose
Severe Abdominal Pain - Can be very sudden and result in an urgent need to visit the bathroom
Loss of Appetite & Weight Loss
Fatigue - Extreme Tiredness and Exhaustion
Blood in Stools - Please contact a doctor if you discover blood in your stools
Swelling of the eyes
Nausea and Vomiting
Constipation Anaemia -Inflammation in the GI Tract can cause Bleeding resulting in an Iron Deficiency (Anaemia)
Vitamin B12 Deficiency - B12 is absorbed through the ileum,
due to the ileum being scarred and inflamed in Crohn's Patients, this can prevent the vitamin being absorbed through the bowel wall
Vitamin D Deficiency - As with the B12 Vitamin, Vitamin D is absorbed through the bowel which can be impaired in Crohn's.
Thereare a range of different tablet-based treatments including
Aminosalicylates (5-ASAs) - Used only in Crohn's Patients if disease is mild
Steroids - These medications can not treat Crohn's long term and are used to bring disease under control
Immunosuppressants - Used to treat Crohn's Disease long term and reduce the need for steroid based medication
If no visible improvement is seen your specialist may move you on to Biological Treatments.
Infliximab - Administered by an intravenous infusion (IV Drip) in hospital outpatients department. These vary from every 6-8 weeks depending on individual response.
Adalimumab - Self Injection at home every 1-2 weeks.
Ustekinumab - Initial dose is administered by an intravenous infusion (IV Drip) in a hospital
outpatients department. After which, self-injection at home is permitted. Treatment is generally required every 8-12 weeks.
Vedolizumab - Administered by IV Drip in hospital outpatients every 4-8 weeks.
Surgery & Crohn's Disease
Surgery can also be suggested to remove badly affected areas or to give the bowel a break and allow medications to begin working.
Recent studies suggests that 1 in every 5 patients will require major surgery of removal of sections of the bowel, within the first 5 years of diagnosis.
As with all Medications, Treatments and Surgeries, there are risks. Please discuss any concerns with your Gastroenterologist or Surgeon.
All major surgeries are performed whilst the under General Anaesthesia.
Strictureplasty Scarring in the bowel can lead to areas being narrowed. These strictures can affect food passing through the intestines and cause blockages.
This surgery is only suggested if other dilation methods, such as colonoscopy balloon dilation, have failed. This procedure avoids having to remove any
sections of the intestines. The bowel is opened, reshaped and widened and sewn back together.
Bowel Resections (Colectomy) This involves removing badly diseased sections of the bowel and re-attaching the ends together. This surgery can be laparoscopy (Keyhole) or through open surgery.
Ostomy Surgeries (Ileostomy, Colostomy)
This surgery involves bringing the end of the bowel to an opening in the abdominal wall. This is then connected to a pouch on the outside of the body, known as a Stoma.
If the bowel only needs time to heal, a temporary ostomy can be offered and reversed once medication has healed the affected area. If damage is too severe to heal, and reversal is not a viable option, a permanent ostomy will be put in place.
An Ostomy can be a temporary or permanent procedure, and both will be discussed with you.
Most minor surgeries are performed whilst the under General Anaesthesia
Fistulotomy is when a surgeon cuts along the length of the fistula tunnel and is laid open to allow healing. This procedure is not advised with all fistulas, especially those near or through the sphincter muscles.
If a fistula is situation near or over the sphincter muscle, to avoid the risk on incontinence, your surgeon may suggest inserting a Seton.
A Seton is a thin surgical thread, which is fed up the canal and looped through the anus and then loosely tied. This allows the fistula to drain and avoid abscesses forming.
Other options include:
Endoscopic ablation, a small camera placed in the fistula track and has an electrode passed through to seal.
LIFT Procedure, when the sphincter muscle are moved in order to lay open the fistula tract.
Your surgeon will explain more, and which will be the best option for you.
Complications in Crohn's Disease
Crohn's Disease can be very unpredictable, and symptoms can present themselves very suddenly. Crohn'sdoes not only affect the digestion tract and can affect other others of the body.
Crohn's Disease can be very unpredictable, and symptoms can present themselves very suddenly. Crohn's does not only affect the digestion tract and can affect other others of the body.
Due to Crohn's being an autoimmune disease, this can lead to other complications: Strictures Scarring in the bowel can lead to areas being narrowed. These strictures can affect food passing through the intestines and cause blockages.
Fistulas are very common in patients with Crohn's Disease, with 1 in 3 developing these during their lifetime. Small canals form from one organ to another. Perianal fistulas are located around the rectum and form tunnels to the outside of the skin or other organs. Abscesses can develop and proper drainage is required. This is achieved by having surgery.
Anal Fissures are small tears in the opening anus and are very common in Crohn's patients. These generally heal on their own, but surgery may be required if it does not heal.
Inflammation does not contain itself to the GI Tract and can affect other areas. Arthritis is inflammation in the joints and is a common complication in Crohn's patients. Painful and swollen joints can inhibit movement. Many biologic treatments used in the treatment of Crohn's Disease are also used in patients with Rheumatoid Arthritis and could be beneficial to both ailments.
Inflammation of the bowel, extended steroid use, removal of the small bowel or low levels vitamins such as Calcium or Vitamin D can lead to bone loss in Crohn's patients.
Damaged bowel reduces the amount of nutrients absorbed through the intestinal wall. This can lead to Crohn's patients being malnourished. Similarly, symptoms of Crohn's, such as pain, nausea and bloating, may reduce your nappetite. The lack of food intake can lead to malnutrition. If persistent pain is experience with eating, Elemental Diets are available. These include Supplement Drinks, such as Ensure or fed by enteral nutrition (fed via a tube).
Speak with your IBD Team /Dietitian if you have any concerns regarding malnutrition.
What is IBD?
Inflammatory Bowel Disease is an incurable autoimmune disease that causes inflammation of the Gastrointestinal (GI) Tract. There are two types of IBD, Ulcerative Colitis which affects the large colon and Crohn's Disease which can affect any area of the GI Tract (from mouth to anus).
How did I get Crohn's Disease?
There is no exact known cause of Crohn's disease. The immune system is weakened reacts different to the bacteria and viruses. Causes are thought to be linked to Genetics, Diet and Environmental factors.
Smoking increases your chances of developing Crohn's Disease and can make symptoms worse.
What age will I develop Crohn's Disease?
Crohn’s Disease can develop at any stage during the life. Generally, diagnosis is normally between the ages of 15-35 years old.
What Triggers Crohn's Disease Flare Up's
There are many factors which can trigger a Crohn’s flare up, and these all depend on the individual. The general causes are diet – eating something which doesn’t agree with you, certain medications, for example, antibiotics & NSAIDs (Non-Steroidal anti-imflammatories), such as Ibuprofen, and environmental factors. Stress can be a major trigger a flare in some Crohn’s patients.
It is common for women with Crohn’s to have enhanced symptoms when their period is due and continue throughout.
Research shows that Crohn's Disease patients who smoke, are at more risk of making their symptoms worse.
Will I Require Surgery?
Around 75% of Crohn's patients will require some sort of surgery throughout their lives. 1 in every 5 patients will have surgery within the first fives of being diagnosed.
Does Remission mean No Symptoms?
Clinical Remission means that no active disease is detected on medical tests. This however does not mean that you will stop having symptoms. Patients with little to no scarring of the digestive tract may experience no symptoms such are diarrhoea, cramps or fatigue. The same may not apply to those with significant scarring or damage of the bowel. Symptoms can still present themselves even though Crohn’s can be clinically defined are being in remission.
Is Crohn's Disease (IBD) the same as IBS?
Short answer, No. Although they both share very similar symptoms, Irritable Bowel Syndrome (IBS) does not cause inflammation, ulcers or any permanent damage to the intestines and does not require surgery. IBD is categorised as a disease, whereas IBS is a considered a syndrome (a set of symptoms). IBD can be clearly seen on medical imaging while IBS cannot. Crohn’s patients have an increased risk of complications including fistulas, arthritis, colon cancer and anaemia, but these risks are not common in IBS patients.
There are a wide range of Support Groups, both online and in person for those suffering with Crohn's Disease
Crohn's & Colitis UK are the UK's leading IBD Charity and have a large network of support groups around the UK. www.CrohnsandColitis.org.uk.
Crohns and Colitis UK
Crohn's & Colitis UK (CCUK) are the leading UK Charity for Inflammatory Bowel Disease. They are a wealth of information and support for IBD suffers, their family and friends. The CCUK website have support pages on all areas of IBD, from diagnosis and medication support, to financial and travelling advice. Their dedicated support line allows those worried about IBD to call and speak to someone confidentially.
Raising vital funds for research, this is achieved by fundraising, events and memberships. CCUK provide a 'Can't Wait Card' to all members which can be used to gain access to toilet facilities if they are urgently required.
They also pioneered the ‘Not Every Disability is Visible’ Campaign, which saw most disabled restrooms labelled with new sign work showing that someone who looks healthy on the outside, can still have a disability.