Day 2 - Are you connected mum?
I’m Helen and I’m 36 years old. For the six months from February 2019, I was nil by mouth; now I am on Home Parenteral Nutrition (HPN) five nights a week and I can tolerate a limited intake of liquid and liquidised/soft food.
I agreed to write my story, but when it came to putting pen to paper, I kept stalling. I realised that since being on HPN I haven’t reflected properly on the changes in my life, I have just ‘got on with it’. Upon reflection, I feel quite angry and upset. There was my life before HPN and then my life after. It is such a strange feeling to resent HPN but at the same time be forever grateful to it for giving me life. I am fortunate that I have fantastic supportive friends and a very loving and caring family – especially my husband and five-year-old son.
I have had Crohn’s disease since I was nine years old and I have been in and out of hospital all my life. I also have Addison’s disease (meaning I must take daily steroid replacement), liver disease, high blood pressure, tachycardia and a permanent ileostomy. Unfortunately, I have also had multiple surgeries, including removal of my large bowel and a burst gall bladder. It was a routine (but emergency) hernia operation which resulted in me requiring HPN. I had the hernia operation, came home and within the week, faeces and bile started coming out of my stomach staples. It was concluded that I had a fistula (when unravelling my intestines, it was discovered that a hole had developed in my bowel). I was in hospital for five long solid months.
The hospital put me on Total Parental Nutrition (TPN) 24 hours a day, glucose and lipid bags. I was completely nil-by-mouth. Before long I was having trouble with my eyesight, I had developed severe diabetes. So, I was transferred to just lipid (fat) bags. As a result, I have ongoing cholesterol problems. I am now on a combination of vitamin and mineral bags. On my ‘days off’ I really notice that I have not had the feed - fatigue is one of the main problems I encounter on HPN.
When I was first home, in July 2019, I was fed via HPN seven days a week, 13 hours a day (I couldn’t shorten the feeding time as I needed potassium and that has to be infused slowly). I could only drink a limited amount of clear fluid daily – 500ml. I used to have nurses come every day to my house to connect and disconnect me but now my husband and I are trained to do this. This means that I don’t have to be available at certain times for the nurses, and connection times can be of my choosing, giving me greater control.
I have much more freedom now and my quality of sleep has improved. Currently, 2,000 millilitres are infused, which means that I wake up every few hours in the night to go to the toilet. I feed five nights a week.
My son often calls out: ‘Mum, are you connected or off-connected?’ – meaning: Am I feeding or not? In other words, as he knows I carry the feed in a backpack when I am connected, I am a lot slower at moving. Therefore, he realises that he has longer time to do something that he isn’t meant to be doing!
My recovery has been slow, and although I have improved, I still sleep 12 hours a night and I am unable to return to work at present. I am a qualified social worker, and I do still have my job, and hopefully once I have had four more corrective surgeries (which the pandemic has put on hold), I hope a bit more normality will resume. There is no guarantee I will be able to come off HPN and eat ‘normally’. I am already limited in what I can eat because of the ileostomy and the narrowing of my bowel. I cannot digest fatty food (no gall bladder), and I’m lactose-intolerant, but I do love food and drink and want to enjoy it.
During the lockdown, in terms of restaurants and eating out, holidays, etc., I did not feel like I was missing out. However, this is becoming harder as everyone begins to socialise again as I cannot eat much, and I must be back home to connect to my feed.
This year’s pandemic in some ways has been positive: it has gifted me close time with my family – important time which was sorely lost when I was in hospital last year. My relationship with HPN is like a ‘double edged sword’. It is restrictive, time consuming and mentally challenging. At the same time, it maintains my adequate nutritional needs and permits me to be at home with my family. Viewing life with HPN through this idiom provides me with realistic perspective; despite the negatives of HPN, the positives outweigh the negatives. HPN allows life, with my family, and family is my life.