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since May 2004

The first few weeks seemed to be an endless round of changing dressings and his ileostomy bag. The mucous fistula and the wound drained constantly and produced copious fluid. I experimented with dressings and bags - neither was satisfactory. The fluid seeped onto his clothes which meant he often had to change his shirt and trousers several times a day. His record was three complete changes of clothes and dressings in 30 minutes.

During the night we were up at least once, often twice, sometimes more, changing the bedding as well as everything else. The hospital had kindly lent us some half sheets and we had pads underneath, so at least I didn't have to change the entire bed.

It took us two and a half hours in the morning to get Gary up, showered, changed and dressed.

Despite this, we managed to take trips out of the house. Gary had been cooped up for so long, he wanted to get out. We would take a change of absolutely everything and drive over to the coast or to one of our nearby towns. When he needed to empty his bag, or a dressing needed changing we would find a disabled toilet and go in together.

Five weeks after he first came home we went on holiday for a week to Scotland, after promising the surgeon that we'd come straight home should any complication arise. This was a wonderful week, despite the fact that it poured with rain every single day. We stayed in a caravan site that had entertainment on each evening. Gary was still very weak and tired easily so during the day we would dodge the rain and visit the local town and in the evening we went to the entertainment. For the first time we began to feel we were returning to normal.

After this holiday I returned to work for the first time since Gary had his operation. Gary needed less attention. His wound was beginning to heal and his mucous fistula was slowing down, although it would continue to drain for another three years. He could cope until I came home.

We now discovered what had been wrong with Gary. The surgeon had sent his bowel for a biopsy and the results showed he had Crohn's Disease. Neither of us had ever heard of this. We discovered that it was an inflammatory condition of the bowel and could flare again. The specialist said he had a 75% chance of remaining in remission with the large bowel removed.
A month afterwards Gary himself returned to work. He managed remarkably well.

It was at this stage that I announced to Gary that we were going to try for a baby. While he was in ICU the nurses had explained that he faced another operation in 12 months time to remove his rectum. This can result in impotence and so I was advised to have a baby before then, if we wanted a family.

I was pregnant in less than four months.
As I experienced the delights of morning-afternoon-and-night sickness, Gary started to develop severe stomach pains. His stoma stopped working and swelled dramatically. I rushed him into hospital to discover he had developed a blockage. This meant that the food could not pass through him. A blockage is extremely painful and potentially serious if not dealt with fairly quickly. For the next four months Gary averaged one blockage per month, always at night. We developed a routine - I'd drive into the hospital grounds, park in the ambulance bay, drop him off at the door to casualty and then go and park the car. Gary would drag himself into the hospital where he was rushed into a cubical and I'd arrive ten minutes later, feeling very sick.
As soon as my sickness wore off the blockages stopped!

During this time Gary also had vitamin B injections as his body had been depleted while he was so ill. He also spent a week as an inpatient to have his optic nerve examined. As soon as one health problem was resolved, another seemed to take its place. I spent my pregnancy convinced that Gary would not live to see his child born.

In my final month of pregnancy, Gary had no problems. No hospital trips, no scares, no blockages. I went into hospital and gave birth to our son, Andrew, who came into the world weighing 7lbs 12oz and healthy. Gary was with me throughout. We were a normal couple having a normal baby.

It was a turning point in our lives.


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