Crohn�s: overcoming digestive disorder (LONDON, Health-news.co.uk)

Wednesday, June 25, 2003

Crohn�s disease is a debilitating disorder of the digestive system and typically strikes in early adulthood. Tracy Verbitsky from Northamptonshire, who was diagnosed at 21, tells us how she�s refusing to let the condition beat her.

Crohn's disease affects up to 40,000 people in the UK

Tracy, now 33, was in the army and had just got married when she developed Crohn�s. Previously, she�d been in good health and never visited the doctor. �If I was worried or stressed I�d have a bit of diarrhoea, but never thought it to be cause for concern,� she says.

So when Tracy suddenly developed diarrhoea, she wasn�t worried. �There were a few people off work with it so just thought I had a bug.� Then she started losing weight, and people asked if she was dieting.

Her husband Ski had been away on a course and on his return told Tracy she looked terrible. �By this stage I�d had diarrhoea for four weeks.� There was also blood in her stools and, as she calls it, she had �an accident� at work. She decided to see the doctor.

Symptom confusion

Crohn�s is an inflammatory bowel disease that affects sufferers anywhere between the mouth and the rectum but most commonly the small intestine. It causes inflammation, deep ulcers and scarring to the wall of the intestine, and often occurs in patches with healthy tissue in between.

Like many patients, Tracy found it hard to get diagnosed because the symptoms � pain, diarrhoea, tiredness and weight loss � can be easily confused with a range of digestive problems. Doctors suggested Tracy had everything from gastroenteritis to anorexia.

And all the while, Tracy�s weight was dropping � from 10 stone to six-and-a-half. She was surviving on three spoons of mashed potato with chicken soup a day. If she drank water, she either vomited or it went straight through her. Her hair was falling out in patches and her tummy became so sore she was walking stooped over. �I looked like a walking skeleton,� she says.

Despite this rapid and dramatic change in her health, the best doctors were able to offer was the chance to join a six-month NHS waiting list for a barium meal to check whether she had stomach cancer.

Things came to a head when, a few days later, she was so weak she needed Ski to lift her out of the bath. She hadn�t eaten for two weeks by this stage, was barely conscious and severely dehydrated.

She was taken to casualty where doctors discovered Tracy had developed septicaemia � blood poisoning. As a result of the constant diarrhoea, she had developed anal abscesses. These had �popped� and entered the blood stream � she had nearly died.

She was taken straight to theatre. �I remember waking up,� says Tracy, �and it was the weirdest feeling, of feeling better, like 100 per cent totally better.�

Before this, she says the pain felt like �somebody�s punched you but has carried on punching you; it feels like someone is pushing their hand through your stomach and ripping out your insides�.

The right result

Tracy was kept in for two weeks and saw a specialist. He suggested she might have Crohn�s � she was the right age, it typically strikes between 15 and 25, and perianal abscesses are a symptom. However a blood test � one way to indicate the disease but not always the best indicator � showed up negative.

�I went home, everything was fantastic and then about two weeks later everything started up again. But at least we knew what it was this time.� She went straight to casualty, was treated again, and �felt great�.

Despite the results of the blood test, the specialist was convinced Tracy had Crohn�s, and put her on medication. After one more bout of abscesses, her condition was managed successfully for two years.

A rocky ride

But then the problems started again and were aggravated when a new doctor she registered with refused to check her, saying she probably had a stomach ulcer.

The result was another emergency trip to casualty. Tracy was now 5 stone 10lb and had ulcers between her knees. This time she was in hospital for nearly a year and had to undergo extensive surgery, including having her bowel re-sectioned twice and the insertion of a bag.

Although not thrilled at the thought of a bag, Tracy found it made a big difference to her quality of life. She was well the whole time she had it and it didn�t bother Ski.

Still, after a year, she requested it be taken out � a decision she regrets. �I made a stupid mistake,� says Tracy. But she was only 23 and as far as she was concerned, it only reminded her she was ill. �To me, that was a symbol that I was really sick and I thought, �I�m not on tablets now, I must be better � just get rid of it.��

After the bag was removed, she was well for about six months. �Since then it�s really been up and down,� she says.

In control

After those nightmare years, Tracy says she�s pretty much in control of her condition. She adds that she has just been terribly unlucky; most people she knows with the condition manage it very well � one woman has lived with the condition on medication for 32 years and another works full time.

And despite all she�s been through, Tracy is incredibly optimistic. She puts this down to the support of friends and, most importantly, Ski.

Tracy also refuses to be embarrassed about Crohn�s. �I just told people, because I thought it�s bad enough � imagine trying to cover up that you�ve got a bag. You�ve just got to be honest with people. So if people say, �You�re in the toilet ages,� I explain.�

The disease has obviously had a major impact on her life. One of the main problems is tiredness. Tracey has had some part-time jobs but has now decided to take a total break. She hopes that by having a proper rest she will have more energy.

Positive outlook

Nowadays, the minute Tracy knows she�s �Crohnsy� she takes her steroids, stops eating, and tube feeds at night to keep her weight up and rest her bowels. Ski has learnt to give Tracy her vitamin B12 injections and she has to take calcium supplements because she�s been on steroids for so long. �Apart from a few blips, it works pretty well.�

�Before, we were always at the doctors or the hospital, and now, because we can do so much ourselves, it doesn�t feel like I am so ill,� Tracy adds.

For anyone just diagnosed with the disease Tracy advises getting an advocate, someone to support you through the hospital visits and be a witness when you need to apply for things such as disability living allowance.

Also, keep a diary of events such as when you visit the doctor, when you�re bedridden or have accidents � it helps to show up any patterns. And when your Crohn�s is bad, record what you eat � it might highlight foods that aggravate the condition. For Tracy, cola is a problem.

Otherwise, just look after yourself and focus on the good stuff. �We have a really, really good life,� says Tracy. �We�ve been together 14 years, we�ve got pets, a nice house and we�re well happy.�

 

Further information:
National Association for Colitis & Crohn�s Disease
www.nacc.org.uk