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.

Pregnancy and Fertility

Crohn's Disease is mostly diagnosed between the age of 15 and 25 which is the peak of a woman's fertility.  Women of childbearing age who live with Crohn's disease, their fluctuating condition and their treatments that manage their condition may make them believe pregnancy is not a viable option.

Well the good new is that within the same age band, women living with Crohn's Disease are just as likely to fall pregnant as women without Crohn's.  There maybe factors that can hold back fertility such as, scarring from pelvic surgery e.g. a total colectomy (removal of the large intestine).

It is best to try to conceive during a period where your symptoms are stable and under control (in remission).  However, it is best to consult with your gastroenterologist and/or a obstetrician about the pros and cons of continuing your medication throughout pregnancy and breastfeeding (if you wish to do so).


Fertility and Crohn's Disease

Having Crohn's Disease should not make it any more difficult in falling pregnant than to a woman who does not suffer from it.  However, some women with active Crohn's Disease may have problems particularly if you are underweight and eating poorly.  Severe inflammation in the small intestine can sometimes affect the normal functioning of the ovaries.  Inflammation caused by IBD can also cause adhesions that affect the fallopian tubes.  Other complications such as abscesses and fistulas may make you less likely to conceive due to the lack of interest in sex.  Severe fatigue, abdominal pain, diarrhoea and body image worries can have a similar effect.  Being in remission when you conceive may make it more likely that your Crohn's symptoms remains in remission and that you have a healthy and uncomplicated pregnancy.

It is unknown of the exact fertility problems men have with Crohn's Disease. However, there are a few studies suggesting that the sperm quality may be affected by Crohn's Disease but they are unsure whether it is the effect of poor nourishment.


Diet

It is advised during pregnancy to support your body and the unborn baby by consuming a nutritious, vitamin rich diet with extra folic acid. The extra folic acid can be found in a variety of fruits and vegetables such as, beans; broccoli; citrus fruits and peanuts.  However not everyone with Crohn's Disease can eat these fruits and vegetables as it causes problems to their digestive tract.  Most women with Crohn's Disease is given a Folic Acid tablet from the doctors to ensure they are absorbing enough for the unborn baby and prevent anaemia.

Crohn's Treatment and Pregnancy

When you fall pregnant there is usually a trio of specialists, your gastroenterologist; obstetrician and general practitioner.  Due to the nature of Crohn's it can increase your chances of complications such as, miscarriage and preterm delivery.  Due to such as complications your team usually follows your progress as a high-risk obstetrics patient.

With the special drug regimens to treat Crohn's Disease many warrant special attention when trying to conceive.  Obstetricians may recommend stopping all Crohn's medications for the health of the foetus.  However, a change of the drug regimen may affect the mother's symptoms and cause a flare up.  Gastroenterologists may advise staying on the drug regimen to prevent flare ups and stay in remission during the pregnancy.

Before conception takes place it is encouraged to put a plan into place to manage your symptoms throughout the pregnancy as you have your health as well as the baby's health to look after.  Some medications used to treat Crohn's Disease are responsible for causing birth defects.  However the majority have been proven to be a low risk and safe for pregnant women to use.  There are some medications such as Sulfasalazine, which is used to control inflammation stemming from Crohn's Disease, can affect the absorption of Folic Acid.  It is best to consult with your healthcare team about the proper dosage required during pregnancy with your Crohn's Disease.  Folate deficiency can lead to a low birth weight; slow growth and premature babies.  It can also cause Neural tube defects that can lead to malformation and can cause Spinal Bifida (spinal disorder) and Anencephaly (brain disorder).  Methotrexate should not be taken by either partner when trying to conceive or during pregnancy as it can affect the sperm production and quality but also cause severe birth defects in the unborn baby.

 Labour and Delivery

Women with Crohn's Disease are encouraged to deliver normally like every other pregnant woman.  However, if you are experiencing active Perianal Disease symptoms it is recommended to have a Caesarean Section.  C-Sections are also recommended as the best delivery option for Crohn's patients with an ileal-pouch anal anastomosis (J Pouch) which is also known as a bowel resection.  This is because they can avert future incontinence issues and protect the sphincter functionality.

During labour all drugs and alternative therapies are open to all pregnant patients with Crohn's Disease. The only reason you would be denied a drug is that it reacts you your pain relief you use for your Crohn's symptoms (if your obstetrician and gastroenterologist has allowed stronger pain relief than paracetamol).

Breastfeeding on Medications

It is recommended that you breastfeed your baby after delivery even with an Inflammatory Bowel Disease (IBD).  However, most new mothers worry about breastfeeding whilst on your medication for your symptoms.  Whether it is advisable to breastfeed while on your medication all depends on which drugs you are taking to keep your symptoms under control, and whether it passes through to the breast milk and in particular what is known about the possible side effects to the new born baby.  Most drugs used to treat Crohn's have not been shown to harm a baby who is breastfeeding.  It is best to consult with a member of your IBD team about possible problems from your medications with your baby.

My Experience

When I found out I was pregnant in August 2014 with my baby girl, my gastroenterologist had told me a few weeks prior to finding out I was pregnant my blood tests had shown a raised inflammation count and he was wanting my to start Infliximab.  When I had told my IBD nurse I was pregnant she had told me it is advisable not to start further treatment for my Crohn's to prevent a miscarriage.  They had talked together and suggested that I stayed on the Mercaptopurine at 50mg and use Prednisolone if I flared up during my pregnancy.

During my pregnancy I had a mini flare up at 28 weeks and ended up on an 8 week course of prednisolone.  Due to the steriods I had two extra growth scans to make sure my baby girl was not growing too big as a side effect. Around 36 weeks I had reduced feeling of movements and during the second growth scan they had noticed that the fluid had increased. The obstetrician had said it would be best to induce me just to be on the safe side for both myself and baby.

My baby girl and I after delivery

At 38+2 weeks on the 15th April 2015 at 5pm, my baby girl was delivered at a healthy 7lbs 3oz.  Today she is still healthy and showing no side effects of my medication or any symptoms of Crohn's Disease.

Coping in University/College with an IBD

Going to university or college can be exciting and daunting for everyone.  However, people who have an IBD are more likely to face additional challenges and possibly more concerns than anyone else.  Most people are scared to ask for help from anyone once they go to university as they want to be independent as much as possible.  It is better to have the support network in place just to be on the safe side just in case you ever need to use them.  Most of the support available is able to be found from the university’s or college’s disability services.

What support is on offer?

Some students say they do not see themselves as having a disability.  However, you may have needs that other students do not and you might benefit from the support which is on offer.  You may have extreme fatigue which could result in falling asleep during a lecture so, you may be entitled to a personal note-taker or a recorder to record the lecture.  Or if you are not feeling well and you wish to go to your lecture and it starts at 9am but you are stuck in the bathroom and running late, the lecturer will allow you to walk in late and not get marked absent.

Voice recorder

Depending on the university or college some offers flexible studying options including modular or distance learning.  With such a tight course structure it might be possible to take a break from studying if you have a flare up or you could work from home for all or part of your course.  All you need to do is speak to your Course Director or Admissions Team for more information on the course you wish to choose and what they can offer.

Disability support can help you apply for support during university or college or when you apply for student finance you can do it yourself.  It is up to yourself on what you decide to choose.

Do I have to tell anyone that I have an IBD?

It is completely up to yourself if you decide to tell anyone about your illness.  However, if you decide not to tell anyone in your university or college about it you could miss out on the support available.  Quite a few universities and colleges encourage students to talk with them so they can arrange extra support where needed.  You might decide to wait until you have your induction day at your chosen university or college before you talk to someone in disability support about your IBD.  The first initial talk you can request to have an informal talk so you can discuss your options without making any commitments.

When do you find out what support you are entitled to?

You might be asked to attend an assessment interview unless the disability support officer starts the process during the initial meeting with your agreement.  You will need to take a supporting letter from your GP or your Gastroenterologist covering the symptoms of your condition and how the flare ups might affect you.  The advisor may then work with you to come to an agreement (which is called a Study Needs Agreement or a Personal Learning Plan) which will outline the support you have requested.

This will be passed on to your student finance company who will have to agree on it before it gets put into place for financial reasons.  After your student finance company agrees to it all the disability support advisor will pass it on to the staff within your department depending on the support needs you have requested. 

Am I able to get financial help?

When you apply for disability support you can ask the advisor about help you may need with financial.  For example, additional costs for an en suite accommodation in Student Halls; help with travel costs if you are staying at home or help with buying good quality computing equipment.  It all depends on what support needs you can be entitled to.

How do I get suitable accommodation?

The majority of students choose to stay at home with parents, others decide to live independently as they think it is an important part of the university experience.  During the first year you might be offered a place in student hall of residence (if you apply for it) for the first year and this is a good way of meeting new people.  Alternatively you might decide to look for a private rental accommodation, which is usually a shared flat or house with other students.

You might ask the university or college disability advisor to help find you a suitable place for you needs.  If you do not have a Study Needs Agreement in place it might be best to have the supporting letter from your GP or Gastroenterologist when discussing your accommodation requirements as you might be able to get an en suite bedroom.  If you decide to look for your accommodation yourself it might be best to think about the following points when looking for accommodation:

• Has the accommodation an en suite bathroom?
• Do they have its own laundry facilities or a launderette nearby?
• How far is the accommodation from the campus?
• How easy will it be to travel to lectures and other student facilities?
• Is it catered or self-catered accommodation?
• Is there access to a fridge? (Just in case you have medication which needs to be stored at a certain temperature).

What about getting medical help?

If you are studying away from home it is best to register with the University Health Service or a local GP.  This means you will have to change your doctor.  You can register as a temporary patient during vacations at your old GP when you go back home.  When your register with your new doctor all of your existing medical records so they will be aware of your condition.  Before your move speak with your IBD team at the hospital as they might be able to point you in the right direction to a good specialist service.  Also make sure you have a good supply of your medications with you when you leave home and changing your doctors and register as soon as you can with a new one so you can get a new prescription before you run out.

Should I speak personally with my academic staff?

If you have a Study Needs Agreement or something similar, this will cover who may be given information about your needs including the academic staff you will be working with.  However, it may be helpful to talk to the Course Director or the Head of the Department or your Personal Tutor (if you are assigned one) about your IBD and how it affects you.  It may feel embarrassing about talking to them about your IBD but once they have established and understanding you will feel less stressed about the idea when asking for support.  The best thing you can do is be as honest as possible when speaking to any member of staff.  The more information the more likely they will understand what you are going through and might be more flexible around your studies.

What should I say or do?

Students with IBD have found the following extremely useful:

• Toilet needs during lecturers or seminars – you might wish to sit closer to the exit or at the end of a row so you can leave extremely quickly if necessary.
• Lateness – you may arrive late because of urgent toilet needs or because of extreme fatigue or painful joints have made it difficult to walk quickly.
• Medication and/or nutritional needs – you might need to take medication or a high energy snack during lecturers or seminars.
• Feeling unwell – there may be times when you are more exhausted than normal or in more pain and need to take a quick nap or return home.
• Missing classes – due to hospital appointments or being unwell at home or in hospital.
• Field trips – you may be concerned about toilet facilities on the journey and at the field trip designation.
• Privacy – you might wish to keep your illness kept private or you may wish to tell your fellow classmates.

What about coursework deadlines?

The most important concern for many IBD students is coursework deadlines and getting them handed in on time especially if you are having a flare up or if you have been admitted to hospital.  Some universities and colleges will cover an extension request in your Study Needs Agreement.

Others may ask that you apply for mitigating or extenuating circumstances form when you can if you know you will not meet the deadline.  This might mean that the penalty for late submission is waived and/or you are given the opportunity to do the piece of coursework again.

Every university and college has different rules so it is best to check in advance what the policy is just in case you have any problems with meeting deadlines.

Is there any help with coping with exam stress?

With the intense pressure of exams and revising in a very short period of time can affect most people.  The effects can be worse if you find that extreme stress can trigger a flare up.  The best thing to do is pace your studying out and find ways to help you to relax such as, taking regular exercise, deep breathing techniques or yoga.

If you have a Study Needs Agreement or you have to talk to your tutor about your IBD and able to provide a medical certificate from your doctor you may be able to ask for special arrangements in exams.  This might include sitting close to the exit nearest the toilets, taking the exam in a separate room or extra time.  If you are completely unable to sit an exam due to being extremely unwell you might be able to defer sitting the exam until you are better without a cap on your grade.

What about telling my fellow classmates?

Meeting new people is daunting as you do not know how they will deal with the information you tell them.  It depends on yourself if you prefer to tell people from the start or after a short period of time.  If they cannot deal with it then they are not likely to become good friends.  If you become unwell during the semester then you can choose to limit the information you give them or tell them you had a stomach bug.

As you make new friends you will know which approach to take with them and who is the most likely to be understanding and trustworthy to talk to about your IBD.  Most people choose to only tell their close friends and use them as the main support and try to keep the environment as close to it as it was like at home.

Most people are cautious of what they eat and drink especially when they go to university or college.  Quite a few people avoid alcohol during ‘freshers’ week when there tends to be a lot of different activities to help you settle in and get to know what the university or college has to offer you.  If alcohol triggers a flare up you can always think of a reason for not drinking before so you are prepared to respond to any comments.

While it can be extremely tempting to throw yourself into your new life at university or college and enjoy all the new experiences on offer, but it might be beneficial not to go beyond your limits to fit in.  Pushing yourself can make you feel ill for a longer period of time.  This will mean you would miss out more in the long run.  It can also be hard living without your parents to remind you to take your medications at the right times.  It might be worthwhile downloading an app to remind you on your phone or putting a big note on the back of the door so you get reminded before going out the door.

When you have good days it is best to stay on top of your coursework and readings and being sociable as well.  This will help you on your bad days which can leave you restricted on what you can do.

What other support is available?

The majority of students experience anxiety at some point when starting university or college.  Sometimes the pressure of exams, coursework, being away from home for longer periods of time and feeling isolated when ill.  Some or all of there may become too much to deal with on your own and this is where the support of friends and family come in.  If you find that you are anxious, stressed or even depressed you can use the counselling services available at the university or college in complete confidence.

Some universities and colleges offer both face to face counselling services and phone based helplines which you can use.  The counselling services can help with a large number of issues including health related or dealing with dilemmas or decision making or identity issues.  There are also other methods available such as, online forums and social media sites such as Facebook.

My experience

I was diagnosed with severe Crohn’s disease in the middle of my placement year (3^rd year) of university.  I had a few things already in place from the middle of my first year through disability support for my asthma and low mood.  As soon as I got home from my placement with my hospital discharge form I had sat down with my disability support advisor and put in place everything I needed.  I was able to get a laptop, printer, voice recorder and printer credits from the financial side.  Due to me living at home so my family could support me as I was still learning about my condition and symptoms I was given extra time to come in if I had lectures or seminars at 9am.

With my extreme fatigue and falling asleep in clases, I was eventually assigned a personal note taker who sat at the back of the room and took notes and typed them up after class and emailed them to me.  I also had a support worker who helped me manage my time and other weaknesses which made me panic and then caused a mini flare up.  For exams and class tests I was given an extra ten minutes for each hour for the exam or test.  Also for exams I was in a separate room from everyone else and there were no more than eight students in the exam room at any time.

My graduation photo

On most of my good days I had stayed on top of all my assignments and revision which made it a lot easier for my bad days as I was able to recover quicker.  Most of my fellow classmates had been told about my condition and some of them were ignorant and said I could do everything I wanted and my condition did not prevent me from doing anything but I never listened to them.  The people who listened to me give me the best support possible and even researched it and made it easier for me to finish my final year even when I kept saying I was going to give up.  This support helped me through the last year and I had graduated with a 2:1.  The support from my family also helped as well the most support I got was from my dad as he took me to all my hospital appointments and even rearranged most of his to have his on the same day as mine.  This was to do with company while we had to wait even though we were in two different clinics.

If anyone has any further questions please feel free to leave a comment or email me privately using smurfasaurus92@gmail.com