What is Crohn's Disease?

Crohn’s disease is a chronic illness which causes severe inflammation of the digestive tract.  It is known for abdominal pain, diarrhoea and affecting the persons quality of life.  It is characterised by alternating between flare ups and remissions.  It was named after the person who first described the disease back in 1932, Dr Burrill B Crohn.

Crohn’s disease is included within a larger group of illnesses known as inflammatory bowel diseases (IBD).  It can appear anywhere along the gastrointestinal tract from the lips to the anus.  However, it is mainly found in the distal small bowel and colon.  Due to it developing anywhere within the intestinal tract it can make diagnose and treatment slightly difficult.

Over time, ulcerations can develop and extend through the layers of the intestinal tract. This can cause severe complications such as:

·         Strictures (intestinal narrowing)

·         Fistulas (abnormal tunnelling)

·         Anal fissures (painful tears in the skin around the anal area)

·         Ulcers of the gastrointestinal tract

·         Malabsorption

What Causes Crohn’s Disease?

The cause of Crohn’s disease is unknown. It’s an autoimmune disorder. That means that a combination of genetics and environment cause your immune system to attack your own intestinal cells.  At the moment there is research into the different fungus and bacteria which live within our bodies in our digestive track to see if there are any differences in how they work within our body to a person who has not got Crohn’s disease.

• What about age?
Crohn’s disease most affects people between the ages of 15 and 35.  But with all the new technologies within the hospitals there are children as young as 6months old being diagnosed with Crohn’s disease and Ulcerative Colitis.

• Family History?
Those with a family history of Crohn’s disease unfortunately are at a higher risk of having the illness.  Unlike myself I happened to be the first of many generations who had been diagnosed with Crohn’s Disease.  With me having it, there is a chance of 10-15% of my children having but if they are not diagnosed with it they can be a carrier just like all the other genetic illnesses out there.

• History of Autoimmune Disorders?
If other autoimmune disorders are present within the family or within yourself (such as rheumatoid arthritis and fibromyalgia) you have a higher risk for developing Crohn’s disease.

• Race/Ethnicity?
Although people of all races have the disease, Crohn’s is found more often among people from Eastern Europe and American Jews of European descent.

Symptoms

What Are the Symptoms of Crohn’s Disease?

Symptoms of Crohn’s vary depending on the severity of the disease and the location of the inflammation. The most common symptoms, however, are severe abdominal pain, bloating and cramping during a severe episode. Other symptoms can include weight loss, diarrhoea that may or may not contain blood or mucus, fever, and fatigue.

Because it involves the immune system, symptoms of Crohn’s disease can also be found outside of the gastrointestinal tract. The disease can also include arthritis, skin rashes such as; erythema nodosum, sores inside of the mouth such as; mouth ulcers or canker sores, osteoporosis, and kidney or gallstones.

How Is Crohn’s Disease Diagnosed?

Crohn’s disease is difficult to diagnose because the symptoms can mimic many other diseases, such as a parasitic infection, diverticulitis, a common disease found in the large intestine, Coeliac disease and colon cancer. Another reason that Crohn’s is difficult to diagnose is that there is no specific blood test to identify the disease.

A doctor will consider a variety of factors in diagnosing Crohn’s disease. These include:

· History and Physical Exam

Your doctor will begin with a detailed history of your symptoms and any ask about a family history of autoimmune disorders.

· Abdominal X-ray

This is done to check for any intestinal narrowing or obstruction, which can be a medical emergency.

· Ultrasound

An ultrasound will rule out diseases of other abdominal organs such as the liver, gall bladder, or pancreas.

· CT Scan or MRI

These imaging methods are used to determine any complications of the disease such as fistulas or abscesses.

· Colonoscopy

This is the gold standard for diagnosis of Crohn’s disease. A colonoscopy enables a doctor to see the inside of the intestinal wall and remove a tissue sample for further examination.

How Is Crohn’s Disease Treated?

Due to no known cure as yet for Crohn’s disease doctors can only try to prevent complications and control inflammation. Since the disease alternates between periods of remission and flare-ups, treatment focuses on helping you avoid any flare ups. Treatment varies based on the site and severity of disease as well.

Some treatment options include:

Medications

Many different medications are used to manage Crohn’s disease. They may be used alone, or in combinations.

· Corticosteroids can be used to control inflammation and quiet the immune system. Because of the side effects of chronic use, steroids are often prescribed for a short-term during a flare-up.

· Aminosalicylates are anti-inflammatory drugs that treat mild to moderate symptoms and help keep you in remission.

· Immunosuppressive agents are prescribed to help you maintain remission by calming an over-active immune system.

· Antibiotics are prescribed to prevent and treat infection or decrease the overgrowth of bacteria in the gastrointestinal tract.

· Biologic agents are similar to drugs used in chemotherapy and are given for more severe cases. These medications may be given orally, intravenously, or by self-injection.

Surgery

Depending on the location and severity of the condition, it may be necessary to remove a diseased portion of the intestine. Unfortunately, this doesn’t cure the disease. Crohn’s is a chronic illness that often will reoccur later in life. There are also times when it is necessary to remove an ulceration or blockage in the digestive tract.

Surgery is done cautiously and every attempt is made to preserve as much intestine length as possible to avoid further complications.

Nutrition

People with Crohn’s disease are often underweight because intestinal inflammation interferes with the absorption of food. Nutritional counselling and dietary supplements may be used to try and prevent malabsorption.

Stress Management

Stress can increase the frequency and severity of flare-ups. Stress management and emotional support are important to a successful treatment plan.

Can a Crohn’s Flare-up Be Prevented?

Crohn’s flare-ups cannot be prevented. Certain lifestyle changes, however, can decrease the severity of a flare-up:

· Dietary Changes

A low fibre diet can decrease bowel frequency and help reduce diarrhoea. Many Crohn’s patients find that diarrhoea and flatulence improves by limiting gas-producing foods such as beans, cabbage, broccoli, raw fruits, and juices. Limiting dairy has also been helpful in managing the condition. A dietitian may also recommend six small, frequent meals per day instead of three large ones.

· Stress

Limiting stress and learning to manage it with exercise and relaxation techniques can help decrease symptoms.

· Smoking

Recent studies have shown that even light or occasional smoking can increase the intensity of flare-ups.

· Compliance

Patients who have Crohn’s must take their medications exactly as prescribed and follow their treatment plan in order to prevent complications and hospitalisations.

Crohn’s disease can be a lifelong challenge. Following your doctor’s advice and sticking with your diet and treatment plan can greatly improve your quality of life.

Colonoscopy Preparation

Preparing for a colonoscopy can be extremely difficult especially when friends and family eat in front of you and you just want a bite of their food.  Depending on your preparation choice (Picolax or MoviPrep) it influences when you have to start your preparation for the colonoscopy.  MoviPrep is the day before the procedure whilst Picolax is 3 days before the procedure.  For both preparations you can take your usual medications but avoid all iron medication and any other constipating drugs for one week before the procedure.

BOTH preparations cause diarrhoea!  And both may cause stomach cramps and vomiting.  These preparations are to clean the bowel out for the colonoscopy.  If you cannot handle the pain and cramps drink the preparations more slowly over 30mins to ease the side effects and if it still persists seek medical advice from the endoscopy unit or GP (if open).

To reduce irritation from wiping use soft or moist tissue paper and apply petroleum jelly (Vaseline) to your bum before and after each visit.

With Picolax you have to start a low residue diet Day 1 (3 days before the procedure).  So if your procedure is on the Monday you start your diet on the Friday.  See the below for the list of foods and drinks you are allowed and the ones you have to avoid when following a low residue diet.

Day 2 (2 days before the procedure) you must follow a clear liquid diet.  See below for the list of drinks allowed when following a clear liquid diet.

Day 3 (day before the procedure) you have to continue the clear fluids to prevent you from becoming dehydrated.  At 8am dissolve the powder containing one sachet of Picolax with 150ml of cold water and drink.  At 4pm dissolve the powder of the second sachet of Picolax and drink.

On the day of the procedure if you are only having a colonoscopy, keep drinking clear liquids up until your appointment time to satisfy your thirst.  After your procedure you can start eating and drinking as normal again.

With the MoviPrep the preparation starts the day before the procedure.  You have to have a low residue breakfast BEFORE 8am.  After 8am follow a clear fluid diet.  To prepare the MoviPrep take one of sachet A and one of sachet B and dissolve both in one litre of luke-warm water.  Start drinking at 1pm and finish at 2pm, drink one glass every 15mins.  And do the same with the second set of sachets and drink between 6pm and 7pm.  Drink each glass as quickly as possible instead of sipping it slowly.

A low residue diet can include any of the following:

• Boiled potatoes
• Cheese
• Chicken – grilled, roasted, boiled (not fried)
• Chocolate with NO fruit/nuts
• Clear strained soups – chicken, beef, vegetable (ensuring there are not bits left)
• Cornflakes
• Couscous
• Crisps
• Custard
• Eggs
• Fish – grilled or poached (not fried)
• Frosted flakes
• Ice cream
• Jelly
• Milk
• Peeled, well-cooked, soft/mashed vegetables
• Plain biscuits e.g. rich tea
• Potatoes (no skins)
• Rice Krispies
• Rice pudding
• Seedless jam
• Semolina
• Smooth yoghurts
• Soft/ripe, peeled fruit without pips or seeds e.g. tinned fruit, melon, ripe bananas, apples, pears
• Spices/pepper
• Sponge cakes with NO fruit/nuts
• Squash/fizzy juice
• Stock cubes
• Tea/coffee
• White bread/flour
• White pasta
• White rice

AVOID

• All cereals containing dried fruits/nuts
• All dried fruits
• All seeds, pips, tough skins
• All whole wheat cereals e.g. shreddies, Weetabix, etc.
• Avoid all nuts including coconut and almonds
• Baked beans
• Berries e.g. strawberries, raspberries
• Brown rice
• Celery
• Chocolate, toffee, fudge with dried fruits/nuts
• Citrus fruits
• Digestive biscuits
• Horseradish
• Lentils
• Marmalade with peel and jam with seeds
• Marzipan
• Pearl barley
• Peas
• Pickles/chutneys
• Pies/egg dishes containing vegetables as listed below
• Popcorn
• Porridge and muesli
• Potato skins
• Prunes
• Puddings/cakes/biscuits made with wholemeal flour, dried fruit or nuts e.g. mince pies, fruit crumbles etc.
• Quinoa
• Raw vegetables/salads
• Relish
• Skin and bones of fish
• Smoothies and fruit juices with bits
• Split peas/lentils
• Sweetcorn
• Tough, gristly meats
• Vegetable soups
• Wholemeal pasta
• Wholemeal/granary bread/flour
• Yoghurts and cheeses containing fruit/nuts

A clear liquid diet includes:

• 100% cranberry juice (not from concentrate or ones with dyes)
• Clear strained soups
• Flavoured waters
• Fruit cordial/squash ( not dark red or purple coloured)
• Fruit juices (strained if containing not bits) [also avoid cloudy apple juice]
• Jelly (not dark red or purple colours)
• Lucozade and fizzy drinks
• Oxo, Bovril, marmite drinks
• Sports energy drinks
• Tea and coffee with NO milk

Emotions and diagnosis of Crohn's Disease

Being diagnosed with Crohn’s disease may have come to you as a surprise if it does not run within your family.  Usually when you get diagnosed with a chronic illness it becomes the centre of your world.  Every day you have to plan everything around your condition.  When your Crohn’s is in an active flare your independency may become compromised, possibly your mobility and creating a variety of issues with family, friends and co-workers.

It is not uncommon to experience a period of grief after being diagnosed.  There are five stages of grief which can be applied to emotional trauma like being diagnosed with a chronic illness.

There five stages of grief are:

1. Denial – unless Crohn’s disease runs in your family, the diagnosis may be a surprise, which may lead to you rejecting it especially if you have been living a healthy, active life.
2. Anger – having to restrict your way of life to accommodate the current reality based on the chronic illness can have powerful, negative feelings.  You may be angry without yourself, your loved ones or others who do not have the same condition.
3. Bargaining – the transition from your old way of life to living with Crohn’s is a challenging process and you could be tempted to make compromises that will not serve your new health requirements; such as continuing to eat foods that cause flare-ups.
4. Depression – there are a lot of facets of Crohn’s disease that can cause complications such as, the inability to control your bowels; frequent absences from work or school; depending on other people and many more.  With these as well as unexpected flare ups, can make you uncertain about your future and can lead to isolation and a loss in confidence which can lead to depression.
5. Acceptance – arriving at this stage is necessary for anyone adjusting to living with Crohn’s as it signals the detachments from negative emotions.  You have learned that you do not have to let your condition define you.

Researchers have found no direct relationship between emotions and Crohn’s disease; however patients who have negative emotional reactions to their diagnosis may take longer to find effective treatment to control their Crohn’s.

Teenagers are at a particular risk of encountering difficulty in adapting to their illness.  This is due to their inexperience at dealing with ups and downs within everyday life as they have not developed that coping skill yet.

Every patient has different coping mechanisms.  Patients with an optimistic attitude find it easier as they know that there are many effective treatments available.  Some patients respond to their symptoms with acceptance, while others become so upset to the point of worsening their flare ups due to stress.

Patients who see themselves as a burden on their friends and family may irrationally blame themselves for attracting the disease.  Patients with Crohn’s disease can thrive if they accept their condition and find practical ways to adjust to their reality and take everything in stride.  There are ways to take charge and below is just a few:

1. Always be prepared
Always carry a survival kit containing prescription medications, over the counter antidiarrheal medication, toilet paper, baby wipes, an extra pair of underwear and a change of clothes.  If you are going away from home or your workplace do research into the location of public bathrooms beforehand.

2. Get support
Support can be from family members or a trusted friend to help with support and offer reality checks if needed.  Always maintain regular contact with your doctor and consider talking to a specialist such as a therapist or counsellor.  There is also support available online in Crohn’s and Colitis forums and groups on social media.

Even check your national Crohn’s and Colitis websites to see if there are any forums or support groups.

UK – www.crohnsandcolitis.org.uk

USA – www.ccfa.org

3. Empower yourself

There are a few ways to do this.  Reading up on your illness can help you be able to grasp how the disease affects your body and mind and the better equipped you are the better you can handle it.  Even if your Crohn’s is in remission do not be shy to read up on what measures to take if and when it worsens e.g. surgery.  Knowing what you may have to face at some point in the future (not everyone faces surgery but it could be a change in medication) can dispel fearful thinking and help you feel in control of your ongoing symptoms and your reactions to them.

Take note of which foods trigger your flare ups as everyone is completely different and has different triggers and also know what you can do to soothe the symptoms if you eat a trigger food.  This can help reassure yourself about how much control you have over your condition.

Exercise is powerful and can help improve your symptoms.  If you are feeling down exercise can help by elevating your mood.  Also if your emotions continue to overwhelm you do not be afraid to consult with a doctor about other measures such as, anti-anxiety or anti-depressant medications.

When I was first diagnosed I refused to accept my condition until I had the support of my family and my boyfriend at the time.  Without their support it would have taken me longer to accept my condition and help myself by taking my medication.  Do not be afraid to accept your condition as there is plenty of support out there for you no matter where you live.  Nowadays I get the majority of mine from Facebook groups as they are all very understanding and know what I am going through so they can be of better help than my family and friends at most times.  I also take my daughter out on a walk to help with my mood which helps me a lot and then I have a bit more energy as well to do things before the fatigue kicks in again.

The Diagnosis....

Just before March 2013 all I could stomach was soups, liquids and Super Noodles. Just before I went home for a week I had went to the doctors as I was not feeling well, this time it was a Urinary Tract Infection (UTI) but they thought it was so bad that it was near my kidneys. So I was put on a course of antibiotics. When I went home to see my family and friends during the first week of March all I got was are you eating properly or are you taking laxatives. The answer was no to both.

My food for the majority of 6months before my diagnosis.

I had lost just under 4 stone at the time. When I came back I still had the UTI but was feeling dizzy and faint. Within a space of two weeks I had visited the Accident and Emergency 3 times. The first time I was put on a fluid drip and send home with yet more antibiotics. The second time I was hooked up to an ECG machine and sent home with nothing but told to rest up and take it easy. On the third time it was a student doctor that had said that I was at all not well and should not be sent home like the previous times, as I had hardly any strength to even stand up on my own and I was being sick.

At this stage I had lost just under 4.5 stone and the student doctor said either ulcerative colitis or Crohn's disease. I am glad he was there that day or I would probably have still not been diagnosed or either no longer here as I had been getting heart palpitations and he had said it was a sign my body was either shutting down or could not cope no more with the rapid weight loss. The third time of being in A&E I was transferred up to the Acute Medical short stay ward. In the morning I was moved to the Acute Medical Ward for Gastro and Liver care as there was a bed free for me.

In the Gastro and Liver ward I was poked and prodded for 4 weeks. Within the first two weeks I had lost more weight just bringing it to just under 5 stone in total. My consultant and his junior doctors had helped to gather all the information from me and came to a conclusion it was more like Crohn's disease than ulcerative colitis. The only reason which lead to make their decision was the numerous blood tests they had done and all of them showed different vitamin and mineral deficiencies. I was put on a number of different IV drips to boost my vitamins and minerals which I was deficient in. During my stay in the hospital I had a number of tests done to try and see what was wrong with me such as, ultrasound of my liver, kidneys and stomach, endoscopy, colonoscopy and MRI.

My home for just over 4weeks.

For the Ultrasound I was not allowed to eat anything for 6hours before the scan so, they could get a better picture of what was going on. The endoscopy, colonoscopy and MRI I had to drink a disgusting laxative which had made me sick. But because I could not keep it down they had it changed to another one which went down a bit easier but closer to the test times I was really sick so they had to give me fluid through a drip and a paracetamol drip as I was in so much pain.

When they were carrying out the endoscopy they could only find mouth ulcers and ulcers at the back of my throat which was what was causing it painful to swallow anything. In the colonoscopy they had found a lot of ulceration and inflammation in my large bowel. But the consultant said where I was getting my pain in my stomach would not be caused by where they found the Crohn's disease so he ordered a MRI scan to see if it was in my small bowel. After these procedures he had said it was definitely Crohn's disease but he wanted to see how far it had spread. He had also said something about getting put on a drip when I returned to the ward but I was not paying much attention as I had been heavily sedated and was drifting in and out. I cannot even remember getting back into my bed on the ward but I was told that I was helped back into bed as I was near enough fast asleep. I was woken up to be told my dinner had arrived but I fell back to sleep as the sedation had not worn off by that time. It was near midnight I had woken up again but because I was slightly hungry and extremely weak so, I asked for some toast and butter and Lucozade. One of the nurses actually went to the canteen to get me the Lucozade as I could just about make it to the toilet without any assistance so, they did not want to risk letting me go on my own to the canteen. Once I got some food into me I felt a bit better. The next morning I was put on antibiotic and steroid drips for 4days. On the fourth day the plaster over the cannula made my skin come out in an allergic rash so, the nurse asked the doctor could it be taken out and be put on my course of tablet antibiotics and steroids a day early. Thankfully they said yes cause no matter who puts the cannulas in makes me come out in massive bruises. I had also been started on azathioprine as well at 100mg as the dosage goes by the weight of the patient. Also my consultant was unsure of whether or not to start me on humira but would make the definite decision when he got the results back from the MRI scan.
 
A week after my endoscopy and colonoscopy procedures I got disturbed eating my breakfast which I had stolen off the breakfast cart before they started doing the rounds at 8.15am, I was rushed down to the MRI scan. It was a complete waste of time eating my breakfast as I was given more of the disgusting laxatives which I was to drink within an hour before my slot. A few days later I was told that the Crohn's had not yet spread to the small bowel. This was a good thing as he had decided not to start the humira just yet.