My name is Rosemary Martin. I am 70 years old and have been on Home Parenteral Nutrition (HPN) for over 33 years.
43 years ago I became ill. My symptoms were sickness, diarrhoae, cramps, aching joints, dry skin, hair loss and always feeling cold. I was anaemic, generally depressed and could not lead a ‘normal’ life. The fear of having a personal accident meant that social activities and holidays were out of the question, so I soon became a prisoner in my own home. I was put on various drugs and treated for Irritable Bowel Syndrome (IBS). Eventually after a second opinion at a different hospital, Crohn’s disease was diagnosed. There followed frequent admissions to hospital for nutritional disturbances requiring Iron infusions, until it was decided I would have an irreversible ileostomy.
After this, things looked up for a while. Then the Crohn’s flared up again. At my request, I was transferred to Hope Hospital, now known as Salford Royal, to be treated by an eminent surgeon in a special unit called the Intestinal Failure Unit. A laparoscopy was performed first and an abscess drained. At only 5 stone, I was put on HPN to build me up for further surgery. Following surgery, I was left with only 20 inches of small bowel – which was not enough to sustain me and that is why I was put on HPN. I’ve been on it for 7 nights a week for over 33 years now. I know that without the treatment and the care from the doctors and nurses on the unit, I would not be here.
I have tried to lead as near ‘normal’ life as I can. I have been determined to rule my own life and not let the condition or treatment rule it. My family and I have been on many holidays both in the UK and abroad. I have continued to visit the gym, swim, cycle, walk, do my gardening and help to bring up two grandchildren. Most importantly I also returned to work.
Over the years I have been only too willing to help other patients by talking to them. They have had various worries, the most frequent ones are understandable. They worry about what they are putting the family through; they find many activities are no longer appealing to them, so the family don’t continue to enjoy them either. As a patient, you need family and friends the most to support you emotionally, particularly to help with the transition from hospital life to home life again. After a long stay in hospital, people can become institutionalised because the safety that they felt from the doctors and nurses is suddenly taken away. They can feel isolated and alone and many patients want to know what is ahead of them, some don’t. Some want to take one day at a time and take what comes. Others want to try and plan their future.
Young people worry about forming relationships, dating and being able to have a family. Are they going to be able to cope with looking after a family, especially if they become ill and have to be admitted to hospital? Are they every going to meet a partner? Might they grow old on their own? They fear friendships will collapse because sometimes they can’t or don’t want to go out to dinner or partake in certain social activities. If they do have a family, are they going to pass on any illnesses, are they hereditary?
My advice is, remember that you are not along with your problems and you need to talk and share them. One way is to join PINNT, a support group for Patients on Intravenous and Nasogastric Nutritional Therapy. This group was formed over 25 years ago and a magazine is sent to you three to four times a year, where you will find similar problems to your own and how they are dealt with. In addition, there are some really interesting articles and current research in there too.
There is no blueprint for coping with life at the best of times, even with good health on your side. But you need people to understand that you are still reliable, responsible, hardworking, caring individuals and that you are capable of giving and receiving love.
By Rosemary Martin