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(by Pauline)
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since May 2004

Life with a chronic condition can have its funny side.

Andrew was born late Thursday night. As Gary visited me on Saturday evening, he confessed he didn't feel too good and could I have a look at his stoma. Sister ushered us into a side room and sure enough, he had all the signs of another blockage. I asked Sister to confirm this. "Oh," she said, "I don't examine many men on this ward!"
She agreed that it looked as if he had a blockage and added
"I'll phone downstairs and you can go into casualty."

I left Andrew in the care of the midwives, and went down to casualty with Gary. We had first to explain to puzzled staff how it was that a man had been examined in Maternity.
The doctor examined Gary, removing his bag in the process. Yes, he did indeed have a blockage but in view of his medical history it would be better for him to return to the hospital where they'd first operated on him. Could he drive there? Yes, Gary thought he could.
Then the hospital (which was a small, cottage hospital) realised they had no ileostomy bags to replace the ones removed. What could they do? Remembering the large Maternity ward upstairs they decided to borrow - a disposable nappy (diaper)!
They left me to tape this around his ileostomy - no easy task.
Gary arrived at the other hospital where several of the nurses knew him due to his prolonged visits there. They were very confused as to why he was wearing a disposable nappy instead of a conventional bag, and Gary had a lot of explaining to do!

The following day the Sister on my ward rang the Sister on his ward to see how he was doing. I told them I was leaving - so much for my ten day stay in Maternity. I actually stayed until Monday, because of the difficulty of being discharged and travelling on a Sunday.
I came home, left Andrew with Gary's mother, and went to visit Gary. He was doing well.
He came home the following day and for two months had no health problems whatsoever.
When Andrew was 5 weeks old we had him Christened. Our vicar had arranged it so that the surgeon who saved Gary's life, and was also a lay preacher, actually conducted the ceremony.

I was still nursing Gary, as his ileostomy was impossible to manage unaided. We developed a routine whereby I would change his bag and dressings first and then attend to Andrew.
I returned to work when Andrew was 10 weeks old. Gary's illness had resulted in many extra expenses and we'd had to give up a part time job which we'd shared between us. My maternity leave was with some income, but not a full wage. Money was very tight indeed.
Gary meanwhile was beginning to have stomach pains which were growing in severity. Two weeks after I returned to work he was forced to take sick leave. The pain grew and grew and he was put onto morphine. This didn't totally kill the pain, however.
Andrew, who thankfully slept through the night from being 5 weeks old, decided to start teething at this stage. His wimpering during the night would wake Gary, who wasn't sleeping well with the pain. I often took Andrew downstairs and we spent the night there - they were better being separated.
Gary was admitted to hospital several times for tests, to work out what was causing the pain.
At this stage I had three roles, none of which I felt to be doing very well. As a mother I was spending the minimum time with Andrew. In a morning I rushed around getting us both ready. I discovered that he could hold his bottle himself which saved me valuable time but is frowned on as a potential choking hazard. I reasoned that as long as I didn't leave him he was safe but I still felt guilty. At night he was often left with baby sitters as I went hospital visiting. I was also spending minimum time as a wife - rushing hospital visits or leaving Gary alone at home as I went to work. My job as a teacher was also suffering as I had little time to prepare or mark work.
It was a very difficult time for us all.
Meanwhile Gary had been admitted to hospital yet again and placed on a liquid diet. The specialist had said he didn't think it was a Crohn's flare - but was going to treat him as if it was. We were not happy. Gary started to lose weight and look ill. At this stage I took action and demanded a second opinion. The specialist suddenly decided that the diet wasn't working and that Gary required surgery.
Neither the specialist not the surgeon wanted Gary to undergo surgery, but they had little choice with the pain he was in. I was nervous about him having an operation, after his last experience, but I also knew he could not continue as he was. He had no quality of life whatsoever. The surgeon did not want to remove his rectum yet. This is a major operation and he didn't want to subject Gary to it. he also wasn't sure what he was going to find when he operated.

It was now just under two years since he had had his ileostomy. He went down to theatre and I waited anxiously.
This time there was no phone call.
This time everything went smoothly.
The surgeon found and removed adhesions and repaired a small hole in the bowel. Adhesions often occur after bowel operations and can be extremely painful, depending on their location.

Gary recovered quickly. He said the post operation pain was less than the pain he'd been experiencing and he was soon back at work.
I resigned from my job and found part-time employment. With no childminding fees to pay, I was still bringing in the same amount as I was when teaching. It allowed me to be home more with Andrew and more freedom to be with Gary if he was unwell.

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