Getting An Inflammatory Bowel Disease Diagnosis


The Law Of… Avoiding Long Term Complications

Inflammatory Bowel Disease (IBD), not to be mistaken for Irritable Bowel Syndrome (IBS), affects more than 300,000 people in the UK. It is a largely hidden disease and can often cause fear and isolation in those that suffer from it.

Medical Negligence specialist, Alison Hills is actually a Crohn's disease sufferer herself and provides some insight into this largely misunderstood condition and explores the difficulties sufferers face when getting a diagnosis. 

Getting an Inflammatory Bowel Disease diagnosis

What Is Inflammatory Bowel Disease?

IBD comes in two main forms: Crohn's Disease and Ulcerative Colitis. Both are life-long conditions and whilst those affected can have periods of good health, also known as remission, they can also have regular flare ups.

Crohn's Disease

Crohn's Disease is a condition which causes inflammation of the digestive system. It can affect any part of the digestive system from the mouth to the rectum. The most common area to be affected is the end of the ileum which is the last part of the small intestine.

Ulcerative Colitis

Ulcerative Colitis (UC) causes inflammation and ulceration of the inner lining of the rectum and colon. Tiny ulcers can develop on the surface of the lining and these may bleed and produce pus. If UC only affects the rectum, it is known as proctitis, while if it affects the whole colon it may be called total colitis or pancolitis.

What Are The Symptoms Of Inflammatory Bowel Disease?

There are a number of general symptoms of IBD and for some complications with the disease can cause other more serious issues.

General symptoms of Inflammatory Bowel Disease include:

  • Diarrhoea – which is sometimes mixed with blood, mucus and pus
  • Cramping in the abdomen – these cramps can be particularly painful and often happen after passing a stool
  • Extreme tiredness (fatigue) – this can be from the illness itself, anaemia or as a side effect of the drugs used for IBD
  • Loss of appetite and loss of weight – this is usually due to the body not absorbing nutrients from the food you eat
  • Anaemia – the likelihood of developing anaemia is greatly increased if you are losing a lot of blood and not eating much

Some of the more serious complications associated with IBD include:

  • Strictures – when on-going inflammation occurs, healing in the bowel may cause scar tissue to form
  • Fistulas – is an abnormal channel connecting one organ to another or to the outside surface of the body
  • Inflammation of the eyes
  • Thinner/weaker bones
  • Blood clots
  • Inflammation in joints (arthritis)

How Is Inflammatory Bowel Disease Diagnosed?

Getting a diagnosis can often be a very time-consuming exercise involving a number of different tests and scans.

Getting an Inflammatory Bowel Disease diagnosis can involve:

  • Blood and stool tests to check for signs of inflammation
  • Endoscopies where a doctor looks inside the digestive system with a long, flexible tube with a camera at the tip
  • Capsule endoscopies where the patient swallows a tiny camera the size of a pill which takes photographs of the digestive system as it passes through
  • X Rays and/or CT Scans
  • Ultrasounds which help to detect collections of fluid and thickened parts of the bowel wall
  • MRI Scans which are particularly helpful in detecting fistulas and abscesses and distinguishing between inflammation and scar tissue

You may not need all of the above tests, but Inflammatory Bowel Disease is an on-going condition and so some tests may need to be repeated even after diagnosis.

What Is The Treatment For Inflammatory Bowel Disease?

There is no cure for IBD, but there are a number of medications that can help to manage the symptoms.

Medications for Inflammatory Bowel Disease include:

  • Adalimumab
  • Azathioprine and Mercaptopurine
  • Biologic Drugs
  • Infliximab
  • Methotrexate
  • Steroids
  • Vedolizumab

Sometimes surgery is also necessary in more severe cases where the inflammation spreads or strictures form. It can also be necessary where there has been a poor response to drug or nutritional treatment. Surgery can involve  where the inflamed part of the bowel is removed and both healthy ends are sewn back together.

In more extreme cases, it may be necessary to remove most or the entire colon and create an ileostomy which is where the surgeon brings the end of the small intestine out through an opening in the wall of the abdomen and a bag is fitted onto the opening to collect waste.

Can A Misdiagnosis Of Inflammatory Bowel Disease Happen?

Despite the number of tests available, it can be quite difficult to diagnose IBD. Often IBD is misdiagnosed as Irritable Bowel Syndrome (IBS) and whilst some of the symptoms are the same, IBS is generally more manageable and less severe.

However, complications can occur as a result of misdiagnosis or delayed diagnosis as the inflammation can spread through the digestive tract, causing strictures or fistulas. This can lead to the need for surgery which may not have otherwise been required had the condition have been diagnosed and treated at an earlier stage.

What Are The Risks Involved With Inflammatory Bowel Disease Treatments?

Many of the medications prescribed for IBD are strong and come with risks of side effects.

Side effects of medications for Inflammatory Bowel Disease include:

  • Skin rashes
  • Nausea
  • Anaemia
  • Liver Inflammation
  • Pancreatitis
  • Hypersensitivity

Because of the seriousness of these side effects, it is important that the doctor prescribing the medication fully informs the patients of the risks and benefits beforehand so that the patient can make an informed decision.

Problems with surgery can also occur such as perforations, abdominal bleeding, bowel obstruction, incisional hernias and sepsis, which can be life-threatening. Untreated conditions also carry a small increased risk of developing bowel cancer.

How Can Simpson Millar Help With A Misdiagnosis?

A successful claim for a misdiagnosis or an uninformed decision about medication can increase awareness of any problems or medical errors which led to the complaint. It can also provide the claimant with a financial settlement that could help them to acquire the treatment, care and support for a brighter future.

As with all personal injury claims, there is a 3 year limit for anyone wishing to make a claim for medical negligence. In cases of Inflammatory Bowel Disease, the 3 year time limit begins from the date of diagnosis.

If the claim is for a surgical error, the 3 year period will begin from the date of the negligent surgery and for children, the time limit starts from their 18th birthday.

Alison comments:

“I know from first-hand experience just how debilitating this condition can be. Quite recently, I was also hospitalised with a rare form of meningitis which was caused by an adverse reaction to the medication that I was prescribed. Luckily, my condition is currently stable, after making some quite drastic changes to my diet and exercise regime. "

"Having spoken to a number of patients with this condition, treatment and diet do appear to be “trial and error” as what works for one patient may not work for another."

"For me personally, it took about 10 years from first onset of symptoms until I was formally diagnosed. It then took another year to find a regime that works for me, after many episodes of hospitalisation and flare ups."

"The importance of early diagnosis cannot be emphasised enough, to avoid longer term complications, and to gain some relief from symptoms."

If you have suffered as a result of medical negligence regarding a diagnosis of Inflammatory Bowel Disease, contact our Medical Negligence team today for a free phone consultation.

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