My name is Rosemary Martin, I am 70 years old and have been on HPN for over 33 years.
43 years ago I became ill, sickness, diarrhoea, cramps, aching joints, dry skin, hair loss, always feeling cold, I was anaemic and generally depressed because of all this. I certainly could not lead a normal life. Because of the fear of having a personal accident, social activities and holidays were out of the question. I soon became a prisoner in my own home. I was put on various drugs and treated for IBS, eventually after a second opinion at a different hospital, Crohns 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 Crohns 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 was performed first and an abscess drained. As I was only 5 stone, I was put on HPN to build me up for further surgery. Following further 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. I know that without the treatment and the care from the Drs and Nurses on the unit, I would not be here.
I have tried to lead as near normal life as I can and have been determined to rule my own life, not let the treatment rule it. We have been on many holidays both here and abroad, I have continued to visit the gym and swim, cycled and walked, gardened and helped to bring up two grandchildren, I do what I can to help them. Most importantly I returned to work (I am retired from paid! work now).
Over the years I have been only two willing to talk to other patients if they wanted that. 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. The patient needs family and friends the most, to support them emotionally, particularly to help with the transition from hospital life to home life again. After a long stay in hospital, they become institutionalised, the safety they felt from the Drs and Nurses suddenly taken away from them. They can feel isolated and alone. 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 life.
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 ever 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 eat or take part in the activities of their friends. If they do have a family, are they going to pass on any illnesses, are they hereditary?
My advice, remember that you are not alone 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, a magazine is sent to you three to four times a year, you will find similar problems to your own and how they are dealt with. It also includes interesting articles and many stories plus keeps you up to date with items of interest to us.
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 you are still reliable, responsible, hardworking, caring individuals and that you are capable of giving and receiving love.