A productive battle with Crohn’s disease

Emer Mander-O’Beirne weighed only six stone nine months after she and Paul were married and, so bad was her Crohn’s disease, that three times she nearly died. Her husband Paul, describes her illness, her recovery and how they are putting the knowledge they gained to wider use.

Emer and I fell in love in May 1998 and married in 2003 but we had only been married for nine months when Emer was diagnosed with Crohn’s disease. Her condition deteriorated rapidly in May 2004 and she was admitted to hospital as an emergency.

Emer’s weight had dropped to six stone and food had became associated with excruciating pain. She could not eat, and had to have a ‘Hickman line’ so that she could be given liquid nutrition through a tube into her heart via a vein.

She was hospitalised for five months and, to my horror, almost died on three occasions. Her condition took a turn for the worse when the inflammation in her intestine resulted in fistulas on her bladder and spine which became infected, resulting in spinal osteomyelitis. The abscess also blocked her ureter, causing kidney damage. Emer had to undergo surgery to drain the abscess, to resect her bowel and to create a temporary ileostomy. She was so nutritionally run down that her condition was further weakened and she developed pneumonia and pleurisy.

‘In sickness and in health...’
Emer had been very careful to make sure that the ‘in sickness and in health’ bit was in our marriage vows only nine months before! Needless to say, saying a vow and living a vow are quite different things and I certainly did not think we would be facing this type of test after only nine months of marriage. Strangely though, this experience seemed bring us even closer together.

Emer was absolutely amazing throughout her time in hospital. She was strong and positive and even managed to keep her sense of humour.

She had completed an NLP course (neuro-linguistic programming) and we found ourselves looking for the ‘positive intention in every action’ – even every set back! It all became a bit of a joke as, when you are as sick as Emer, there would be one step back for every two steps forward. It may sound a little strange but it was incredibly liberating and allowed us to remain positive throughout.

The road to recovery
When Emer went into hospital, her overall condition was so poor that I changed my job so that I could work more regular hours and become her carer. At this time improvements were measured in her ability to turn over in the bed or walk across a room with a Zimmer frame. Emer had no desire to eat so I had to find ways to coax back her appetite, as well as make sure that she ate the right foods. It was clear to me that the trial and error approach to finding a way to live with Crohn’s was not going to work.

Action...
One of the main things we learnt throughout this period was that you have to take ownership of your own health.
We had to learn how to manage doctors and how to question the decisions made by medical professionals in an appropriate way so that you are treated as a person rather than as a ‘patient’. This challenging may have bruised the doctors’ egos but it ensured that they considered the full picture and did not make any assumptions in the decisions they made on Emer’s treatment plan. This approach has paid dividends for us on countless occasions and protected all of us from hasty medical decisions.

As I love Emer, I wanted to make sure that she never experienced anything like this again. So I began researching what would be the most appropriate food to give to her. At that time, we had no idea that certain foods may have been aggravating her condition or that other foods could give her nutrients that would actively benefit her.
As a non-medical professional I had trouble getting hold of information, and when I did it was difficult to understand. The British Library and various medical databases were at least reliable but not readily accessible, while the information I found online was often questionable.

This new, more informed approach to Emer's diet –
combined with her medical treatment – led to progress in her condition. In 2005 her weight increased to eight stone/50.80 kilograms and the ileostomy was reversed. We felt that we could think about having a child.

Pregnancy – ups and downs!
Emer continued to make so much progress that in 2006 she became pregnant. Luckily, she enjoyed an incredibly healthy and happy pregnancy – and stayed in remission throughout her pregnancy! It was like a gift after all we had been through. However, we were faced with a complication at 34 weeks when Emer was diagnosed with placenta previa (the placenta covering or partially covering the cervix) which meant that she would need a C-section.

We were disappointed as we had hoped to have a ‘natural’ birth after such a good pregnancy but, ‘searching for the positive intention’ we realised that the condition had only been discovered because Emer (due to her complicated medical history) had been so regularly scanned. Both the baby’s and Emer’s health could have been put in jeopardy if she had gone into labour naturally.

Our consultant scheduled Emer in for surgery at 39 weeks. Once again, best laid plans went awry! Emer and I were asleep at 00.30hrs on the day the C-section was due to take place when her waters broke!
The machines in the maternity ward confirmed that Emer was in labour although she was hardly feeling anything. So Emer had a ‘planned emergency’ C-section that was, in the end, a positive experience. We were able to choose to have a José Gonzales CD playing in the background and I was able to keep my back to the ‘business end’ of the procedure and talk to Emer about all the happy memories we had shared.

In no time at all Merric was in our arms and we were all staring at each other adoringly. We had chosen Merric as his name as it is a Celtic name meaning ‘ruler of the seas’ and we both love the ocean. Forty minutes later Emer was all patched up and we were able to enjoy that wonderful sense of achievement and bewilderment that comes from having a baby.

Being a ‘mam’
As Emer had already had plenty of abdominal surgery, we knew the routine for managing the recovery process. We made sure that the right pain medication (some medications had detrimental effects on her Crohn’s) was administered on time and at regular intervals and that she kept mobile whilst avoiding any lifting.
Emer has been a natural ‘Mam’ (Irish version!) from the start. We decided that breastfeeding was the right choice for us as a family and we were fortunate that this worked well. My support came in the practical way of making sure she had plenty of fluids and nutritious snacks throughout the day.

Looking after the health of the mother is a key component in looking after the health of the baby, irrespective of whether or not they have a long-term condition and do or do not breastfeed. Emer managed to keep healthy and was able to breastfeed Merric until he was 14 months old.

More articles on Crohn's disease

First Published in 2009

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