Success Story: Removal of gastrostomy tube, independence and education are some of the goals achieved by Adult Cystic Fibrosis patient with Flo’s tips and support – 2016

Alison Marshall is an Adult Cystic Fibrosis (CF) Specialist Dietitian working within the Tayside Adult CF service.  The team is based at Ninewells Hospital, Dundee, and they are committed to providing specialist care for young people and adults with CF, as well as supporting families of young people with the condition.  The team is made up of specialist multidisciplinary clinicians, including consultants, nurses and physiotherapists to promote all aspects of physical and mental health and well-being.

As a specialist dietitian, Alison regularly reviews patients and offers advice and support around all aspects of nutritional care, such as weight control, supplementary feeding and helping her patients to manage their gastrointestinal symptoms.

In addition to this, Alison is keen to tailor the care that she provides based on her individual patient; Alison also offers cookery or shopping sessions, which can be based in the patient’s own home if appropriate.

One of Alison’s patients is Adam; they were introduced just as Adam turned 16.  Adam lives with cystic fibrosis and like most cystic fibrosis patients, has to work hard to keep up his calorie intake to ensure that he is getting the correct nutrients and that he maintains a healthy weight. 

Alison and Adam have worked closely together to improve his nutrition, with the aim of increasing his weight up to the point where he would no longer need to rely on his gastrostomy feeding tube.

Alison, “ The ideal place for Adam health wise was to have a BMI (Body Mass Index) of 23, but a cystic fibrosis patient won’t always find it easy to eat as much as they need to, so the gastrostomy tube can make a big difference in terms of their nutrition .” 

However, Adam was still at school and naturally wanted to be able to take part in different activities, such as swimming, which would be more difficult for him with a feeding tube in-situ. 

Adam wanted to do the same as everyone else his own age, but still knew the importance of maintaining his weight.  Adam was very conscientious about his health and as time went on, even with a full-time job he would make sure he was home early enough in the evening to allow the gastrostomy tube to do its work.

With the aim of no longer being dependant on the gastrostomy tube, both Adam and Alison worked together to increase his oral nutrition and supplements whilst simultaneously decreasing Adam’s use of the gastrostomy tube, and within a space of six months made good progress.  It was around this time that Alison asked Adam if he’d like to try Flo to help him with this.  

Adam, “I didn’t really have a system for managing my diet.  I would just eat whatever I wanted to and tried to remember to eat snacks in between meals. I would also just try to remember tips from my dietitian such as adding cream to my milkshakes in the morning.  I also never weighed myself at home.”

Flo helped Adam to embed the strategies that he discussed with Alison into his daily life by sending regular friendly messages and asking Adam to record his weight periodically too.

“My dietitian asked me if I wanted to try Flo and I said yes, because there’s no harm in trying something that might help.  I’ve been using Flo to give me tips on how to put on weight, remind me to eat snacks, and also to monitor how much weight I’m putting on and I have found her fairly helpful – I now remember much better to eat my snacks and also have a broad range of tips for putting on extra weight.” 

In addition to the educational messages that Flo sends him, Adam also used Flo’s ideas and methods to set up extra prompts and reminders of his own to help him even more.

Adam now happily says; “I have managed to achieve a significant weight increase which led to the removal of my gastrostomy in my stomach which I was wanting desperately.” 

Adam is now extremely busy completing an internship with a national utilities company, while Alison is still able to send Adam a message via Flo now and then to make sure he is still on track, helping to maintain their relationship whilst Adam maximises his independence.

Flo still maintains her ‘Bossie Flossie’ image however as Adam says “Sometimes the texts could get a bit annoying and if you didn’t send in your weight she would send it a couple of times.” 

However, this didn’t put Adam off at all as he says “Other than that, Flo was a great help!”, Flo has made a huge difference to Adam, and with Flo’s help he has reached his personal goals, and has a very exciting future ahead.

Cystic Fibrosis
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Cystic Fibrosis

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