GUEST POST- Why a PEG isn't just for nil by mouth

Hello to all readers and hope that your SLT careers are off to a strong start. Lauren, the creator of this fabulous blog, has asked me to write a guest post on my experience with feeding tubes and dietary strategies.

A little background: I have atypical Cystic Fibrosis (CF) – a condition which causes severe chest infections and pancreatic insufficiency amongst other things. Of all the things I would have imagined resorting to, a feeding tube was not one of them. I should explain that I am, and generally always have been, a big eater with a huge interest in cooking and foodie activities. I was 14 when I began to experience mild digestive problems as a result of certain foods (notably greasy things and meat). So I went vegetarian. When I was 16, my problems would flare up after any amount of fatty food. So I went vegan. I’d eat nuts to try and prevent nutritional deficiency as at this time I was a keen runner, clocking 40 or so miles per week and competing at County and intercounty level… but these didn’t agree with me at all.

A carb heavy diet was no bad thing for a long distance runner with a good metabolism but I was constantly starving hungry and seemed to eat my body weight each day. My chest had always been a conundrum, with random chest infections requiring hefty courses of antibiotics and steroids to clear up, yet I was so fit that it would have been a bit OTT to keep getting referred to respiratory specialists who could find nothing wrong with me apart from being a bit “productive”. My lung function was outstanding and I and my parents decided to accept that I was prone to chest infections and asthma.

All changed when I started University to do my Biomedical sciences degree. I did well academically, met the best friends anyone could ask for, and running was going incredibly well. I did catch all the fresher’s germs though, and began a downward slope of continued chest infections which I couldn’t seem to clear. I seemed to lose a little bit of my “puff” with each month and never felt fully clear in between bouts of illness. My running performance began to plummet and I was befuddled, to say the least. My diet hadn’t changed (still cramming carbohydrates and not much fat or protein, which was now normal for me), I was sleeping enough, I putting the same, if not more, effort in to training. I was admitted to hospital several times with difficulty breathing, low oxygen levels and chest infections/pneumonia. It was highly unusual for an athlete, I was told, unless I was smoking or forgetting my asthma inhalers.. which I wasn’t!

My 5th emergency admission with a dodgy chest raised concerns and I was referred for a sweat test and CT scan. In the time it took for those to come back, my Mum arranged for me to be transferred to the London Chest hospital in the hope that they would finally take me seriously and sort something out. I was told that I had an unusual, mild form of CF and that was that, really. I was introduced to Pancreatic enzymes which I took with my meals – and could finally eat fat and protein foods in abundance again. As you can imagine, I was thrilled to be able to eat chips and meat again and partake in normal food behaviors with my friends, not always being the picky one. I naively imagined that this would be it now, that I’d be in decent health on new medications and physio routines.

Unfortunately I continued to suffer bad chest infections and my lung function has dropped a fair bit over the years after a couple of pretty terrible pneumonias and operations to remove a segment of lung and some dodgy lymph nodes. It was stressful, to say the least. Understandably in that time, my weight fluctuated and I was introduced to NG feeding overnight to try and gain/maintain weight a bit more easily. My appetite was shot for quite a while and I was dependant on supplements and junk foods as well as NG feeds to keep my strength up. I learned to pass the NG tubes myself which wasn’t too difficult, so that I could pass a new one each night and avoid stares during the day. It might be forgivable after the stresses of illness and the constant focus on my weight, that I developed an eating disorder.

My digestive problems flared up, probably as a result of not taking enough creon and I had a longstanding partial blockage. The sickness it was causing me last year was unbearable and something in me just snapped. I blamed everything on myself and was convinced that my problems were diet related. So I went back to strict veganism and health food addiction, and refused anything with any fat. I wouldn’t even touch foods I thought would contaminate my system. I was convinced that dairy and fat were causing my chest to be worse and that I could control my stomach pain by eating only starchy vegetables, some rice, oats cooked in water and lots of fruit and vegetables. Except, not too much fruit because obviously this was the cause of my early diabetes. And not too much starch because that would worsen my headaches. And not too much soy milk because this would worsen my amenorrhea. And so on, and so forth.

Not surprisingly, my weight plummeted to 36kg and I was admitted to hospital with a cold in the Summer of 2012. My sickness was investigated and I was commenced on heavy doses of laxatives to clear out the accumulated gunk which was blocking everything. I was in denial that I was essentially anorexic. I didn’t want to lose weight and knew I was a bit thinner, but I couldn’t see just how skeletal I’d become. I was fussy to the point of frustrating everyone around me. My blood sugars were impossible to keep up due to the lack of any fat reserves and state of starvation, and I was reliant on a glucose drip to stop me from passing out with severe hypoglycaemia. Something had to change. I was sick of fluctuating and could no longer tolerate my NG tube as I have nasal polyps.

I was sick of looking at food and talking about it. I no longer trusted myself to make sensible food choices and was upset that I had worsened my problems. I began to reintroduce foods with a better profile, take more responsibility with my Creon (enzymes), and counsel myself through mealtimes and “fear foods”. It was brilliant, but not enough to gain much weight (as CF calorie requirements are high anyway).

I opted to have a PEG inserted to take the stress off of me as my issues had partly been because of the constant struggle to eat enough and have a perfect diet. Once I’d recovered and was feeding 5-6 nights per week on 1500 calories of formula, I felt better. I had the energy to put in to my life again and the sensibility to make normal (read: not perfect/healthy) food choices. I realised that it’s ok to eat things that are just enjoyable. That this will do you good in ways that can’t be measured with blood tests and scales.

It’s ok to eat things that other people don’t like, just because you enjoy them. It’s ok to skip meals sometimes and make up for it later with a big meal. Similarly it’s ok to eat when you aren’t hungry, simply because everyone else is and it’s fun. I gained an enormous amount of weight – I’m now a very healthy 50kg at 5ft1 and you can really see the difference. I’m not fat or thin, just healthy looking. I’ve very recently weaned myself off the tube and I’m trialling maintaining weight by a high calorie diet with lots of variety, not too much planning, and use of oral supplements when I’m not feeling well enough to eat proper meals. It’s going very well indeed. I can honestly say, if it weren’t for having the Gastrostomy, I’d never have got over that bad patch last year. I was in too deep to do it all myself and having that safety net was very valuable. It allowed me to nourish myself well before my head and my stomach were fully up to the challenge. I was struggling to accept the necessary variety in flavours and textures when I’d been eating so little and was so confused by it all. It allowed me to stop thinking of food as a decision, and more of a medicine.

Obviously food can be many things… and fun is one of them, but sometimes people with longstanding illnesses and nutritional problems need to be able to restore nutritional stability before anything else improves. Having 3000-4000 calories of actual food to decide on, stare at, chew, taste, decipher and digest is sometimes insurmountable and the use of tube feeding while asleep can help overcome this. Admittedly I did have to psychologically work on a lot of things but physically, the tube gave me the strength to do so. I like the tube as a safety net but I do feel that once it’s removed, it wouldn’t be a big deal if I do ever need one again… although I remain confident that my “everything, and plenty of it” regime will suffice for a long time to come.

by Michelle