My Story

This was written on 14/4/02

Mark Dodson and I met through work. Our personalities just seemed to click into place and after 6 months, we started to go out together. We got on fantastically and everything was wonderful.

On Christmas Day 2000 Mark proposed. It was a real surprise and he was so romantic. We decided on May 2002 for the wedding - it gave us plenty of time to make all of the arrangements.

Everything was going fine and we'd booked the church and reception for May 25th 2002. At the beginning of April 2001, there was a horrendous bout of flu going around. We both caught it and although Mark seemed to recover quickly, I was bed-bound for 2 weeks. I was very weak and developed a chest infection and was prescribed antibiotics. After the worst was over, I started to get very bad diahorrea, bleeding, stomach aches and a dramatic loss of weight. In 1 week I lost a stone. At the start, I was eating normally, but no nutrients seemed to be being absorbed. I gradually lost my appetite and couldn't keep any food down. The doctors didn't seem to know what was going on and so I was referred to a consultant after about 1 month. At this stage, my weight had dropped from about 11 stone down to 8. I was very pale and it was a real effort to climb the 4 steps of the hospital to see the consultant. I felt like an old lady and everything I did seemed to make me weaker and breathless. The consultant took one look at me and admitted me straight away into hospital. He said that he suspected I had Ulcerative Colitis (inflammation of the gut which causes loss of weight, bleeding and a lot of pain).

I stayed in hospital for a week whilst they put me on a drip, gave me steroids and did some tests. The consultant visited me and said that I would have to take some drugs. He said that we would have to try these drugs first and if they didn't work, we would try stronger ones.

I took the drugs and found that although the symptoms had eased for a short period of time whilst I was on the steroids, once I came off the steroids the symptoms came back. The consultant put me back on the steroids (to ease the symptoms again) and we tried a different drug. When I came off the steroids again, the new drugs seemed to work better, but my hair started to fall out and the symptoms still didn't go away completely. The consultant advised that I had two options left - to try experimental drug treatment or surgery. We decided on the surgery.

The surgery would be 2 operations: the first operation, (termed an Illeostomy and pouch formation) would remove my ulcerated and damaged colon, fold some of my small intestine to form a pouch (to eventually replace the colon) and push a section of my small intestine outside my body (termed a Stoma), cut a small hole and a bag would collect the waste. This prevents any waste going near the newly formed pouch and allows the pouch to heal. The second operation would push the stoma back inside my body and sew it up, allowing the newly formed pouch to take over.

Time was moving on closer and closer to the wedding and I was still getting weaker. We decided to schedule the first operation for 3rd December 2001. I was very frightened about the operation. It was quite major surgery and I had never had an operation before.

The operation lasted 5 hours and I awoke afterward feeling very groggy and uncomfortable. I had a morphine epidural for the pain and several tubes sticking out of me. I also had a very large wound running downward for about 6 inches from my tummy button. I had a bag stuck to me over a small red lump - my stoma. Over the next few days, I felt very helpless and was asleep most of the time. Gradually the tubes were taken away and I was able to move around. However, the wound got infected and the pain was tremendous. I had to have morphine injections to try and control it. After 10 days in hospital, I was allowed to go home, where I had to get used to changing my illeostomy bag (a bad stuck over the stoma to collect the waste). I still felt very weak and the District Nurse came to visit me to dress my wound.

We celebrated Christmas 2001 at home, just the 2 of us. It was very subdued and I wish we could have postponed it until later in the year. We visited both sets of parents on Boxing Day and I was absolutely exhausted. I felt like a zombie, sat in a chair whilst people enjoyed themselves around me. My birthday was on the 4th January and we went out for a meal, although I felt very tired and couldn't really enjoy the food.

My condition started to improve and I was able to move around and start thinking about getting back to work. However, another setback was just around the corner. I woke up one morning to find my left leg had swollen up to about twice its normal size and was a purple colour. It was very painful to walk on and all of the veins were standing out. Mark and I were both very worried about this, and so we decided to call the doctor out. He took one look at my leg and rang the hospital. Mark took me into Accident and Emergency. They tried to take my blood pressure and it was so low they couldn't get a reading. I was severely dehydrated and further tests showed that I had blood clots in my leg and a high probability of clots in my lungs. I was in hospital for about a week, during which I started taking Warfarin, a blood thinning drug.

I slowly recuperated at home and my leg slowly recovered. My second operation was delayed by three weeks and I had the surgery on the 11th March 2002. The operation was a success and I was only in hospital for 5 days. However, I had to come off of the Warfarin so that I could have the operation. Soon after leaving hospital I developed another blood clot, but that is now going down. I'm feeling alot better and have started going back to work. I am enjoying life, and although my stomach is still sensetive to what foods I eat, I'm feeling I'm getting back to normal.

I'm looking forward to the wedding, and I had my wedding dress fitting recently and I still fit the dress - I chose the dress when before the first operation and so there was always the uncertainty that it wouldn't fit when it came close to the wedding. I'm looking forward to the wedding on 25th May and I hope that it will be a special day.

As we didn't know how ill I would be for the wedding, we chose not to go to America for our honeymoon, but chose Switzerland instead. We have the choice of chilling out or climbing mountains!! The long flight to America would have caused us concern because of the blood clots I had.

Not very much is known about Ulcerative Colitis, but the number of cases is increasing, particularly among people in their late teens to early thirties. Before I contracted the disease, I had never heard of Ulcerative Colitis and I feel that more people should be made aware so that the treatment can catch it as early as possible. Throughout all of this trauma, frustration and pain, Mark has stood by me. He has had about as much stress and worry as I have, and he has still managed to be supportive and loving. I don't know what I would have done if I wasn't with him and I feel that this experience has drawn us closer together. I would like to thank Mark for being so wonderful and I look forward to our life together.