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

Mercaptopruine

Mercaptopurine is also known as 6-mercaptopurine, 6-MP or Purinethol (brand name). It is an immunosuppressive medication used with other drugs to treat certain types of cancer such as; acute lymphocytic leukaemia and lymphoblastic lymphoma; as well as Inflammatory Bowel Diseases such as; Crohn's disease and Ulcerative Colitis. It is used to help suppress over activity in the immune system which helps slow down the growth of cancer cells if used in the treatment of cancer.

 

Mercaptopurine comes in tablet and liquid form.  Just like the Azathioprine the liquid form is rarely given out to patients. It is advised to drink a full glass of water with or without food when taking the medication.  This is because there is a risk of kidney stones by using Mercaptopurine.

 

Mercaptopurine tablets

 

The dosage given to the patients is similar to Azathioprine as it is based on the patient's body weight, medical condition and their response to the treatment.  The drug might be absorbed through the skin and lungs so any woman who is pregnant or is trying to get pregnant should not handle this medication or breathe in the dust from the tablets.

Mercaptopurine tablet bottle

 

Due to Mercaptopruine effecting the immune system people who take it are more prone to picking up every bug going.  Signs of infection include fevers and chills and feeling generally unwell.  Whilst taking Mercaptopurine it is important to use a sunscreen with a protection factor of SPF 15 or higher due to the skin becoming more sensitive to sunlight.

 

Side Effects

• nausea or vomiting.
• diarrhoea
• loss of appetite
• hair loss
• bruising and/or bleeding
• dizziness and/or fainting
• joint pain/swelling
• tongue/mouth sores or pain
• unusual tiredness
• symptoms of liver disease such as; persistent nausea/vomiting, stomach/abdominal pain, dark urine and yellowing of eyes/skin
• symptoms of possible lymphoma such as; swollen/painful abdomen, persistent fever, night sweats and unexplained weight loss
• change in amount of urine with pain in the lower back and/or side

 

Precautions

• avoid people who have recently received the oral polio vaccine and the nasal flu vaccine
• limit any alcoholic beverages as it can increase the risk of stomach/oesophageal irritation or liver damage
• there is a mixed view on whether you should take this medication during pregnancy and breastfeeding as there is not enough research as to what can happen to the unborn child/baby

 

Interactions

• this medication should not be take within 2weeks of receiving a live vaccine e.g. measles, mumps, polio
• it should not be used with Febuxostat as it can have a very serious interaction

For myself I had picked up the majority of the bugs going around from colds and chest infections especially off my nephew and baby girl :( At the start I had felt really sick taking it but my body had got used to it after a few weeks. Also the first 2months my hair had thinned out really bad that it looked like I was going bald especially above my ears but I had started to use different products to thicken it out again but not to the full thickness it was at the beginning of taking all these medications for my Crohn's disease (like a lions mane).

Humira

Humira also known as Adalimumab is an immunosuppressive medicine. It helps to suppress over activity of the immune system in rheumatoid arthritis, ankylosing spondylitis, axial spondyloarthritis, psoriatic arthritis, plaque psoriasis, severe Crohn's disease and ulcerative colitis. It can help to reduce pain and swelling by limiting inflammation.

Most humira pen packs look similar to below depending on where you are from.

Humira also comes in a pen or syringe. Most people on humira choose the syringe when available as they have full control over it. I chose the pen as I hate the sight of needles.

The injectable areas for humira are shown below

When first prescribed it you are usually given a nurse who comes out to your home to show you how to store the humira in your fridge and also do your first set dosage which is usually two or four injections. 

Due to its effects on the immune system, people who have humira are more prone to getting infections. This includes serious infections such as tuberculosis and sepsis. It is for this reason that people who have Humira are monitored for infections.

Humira stays in the body for several months so the effects of this medicine will persist for some time after you have your last dose.
 
When I had my injection night I used Elma Cream which I had bought from the pharmacy for about £5.  I used it to numb the area as I found that the pen hurt me mainly because of my Crohn's and joint pains.

Elma Cream

Tips for using the Humira Pen:

• Do not use Humira if frozen, even if it has been thawed.
• The Humira Pen contains glass. Do not drop or crush the Pen because the glass inside may break.
• Do not remove the gray cap or the plum-coloured cap until right before your injection.
• When the plum-coloured button on the Humira Pen is pressed to give your dose of Humira, you will hear a loud "click" sound.
• The loud click sound means the start of the injection. Do not remove from your body or the injection will go over you and the surrounding areas and not into you.
• You will know that the injection has finished when the yellow marker appears fully in the window view and stops moving.
• Do not use and do call your supplier if:
  • you drop or crush your Humira Pen.
  • the seals on the top or bottom of the carton are broken or missing.
  • the expiration date on the carton, dose tray, and Pen has passed.
  • the Humira Pen has been frozen or left in direct sunlight.
  •Humira has been kept at room temperature for longer than 14 days or it has been stored above 77°F (25°C).
• If the Pen does not have the full amount of liquid, do not use that Pen.
• Check the solution through the windows on the side of the Pen to make sure the liquid is clear and colorless. Do not use your HUMIRA Pen if the liquid is cloudy, discolored, or if it has flakes or particles in it. Call your supplier. It is normal to see one or more bubbles in the window.
• Do not inject HUMIRA into skin that is:
  • sore (tender)
  • bruised
  • red
  • hard
  • scarred or where you have stretch marks
• If you have psoriasis, do not inject directly into any raised, thick, red or scaly skin patches or lesions on your skin.
• Do not inject through your clothes.
• Do not rub the injection site. You may have slight bleeding. This is normal.

 

Side effects of Humira can include:

• abnormal blood test results
• blood and bone marrow problems
• headaches
• high levels of lipids in the blood
• infections
• inflammation of the nose and throat
• injection site problems such as redness, inflammation, bleeding, itching, swelling or pain
• muscle, bone or joint pain
• nausea
• pneumonia
• sinusitis
• skin rash or rashes
• stomach pains
• asthma
• Vomiting
• bleeding problems
• blood in the urine
• breathing difficulties
• changes in blood clotting time
• chest pain
• dehydration
• depression
• dermatitis
• difficulty sleeping
• eczema
• eye or eyesight problems
• faster heart rate
• Anxiety problems
• fever
• hair loss
• healing problems
• Allergic reactions
• increased blood sugar levels
• indigestion
• inflammation of the eyelid
• flu like symptoms
• migraines
• muscle spasms
• psoriasis or psoriasis-like rash
• raised blood pressure
• urinary tractinfections (UTIs)
• vertigo
• circulation problems
• lupus or lupus-like problem
• lymphoma
• erythema multiforma
• gastrointestinal problems

I was on Humira from August 2013 to March 2014. I started developing really sore joint pains around that Christmas time and it got worse as time went on especially around injection day (fortnightly for me). Then when I was seeing my IBD nurse in the hospital at the end of February I had mentioned high temperatures and migraines so, she told me to phone or email her if it kept happening and it did. She told me not to inject until the high temperature settled but it was still spiking every few days. To this day 2months later there is still no answer to my spiking and dipping temperature. But I feel better in myself now including my joints :) hopefully that stays like that as I am in less pain now than what I was a few months ago. However, not all drugs have the same side effects on everyone so what does not work for me might work perfectly for someone else with Crohn's disease.