Patient stories - Dietitians Week

Rebecca received support from a dietitian to tackle malnutrition after battling severe digestive disease.

My name is Rebecca and I spent months in ICU and in hospital with severe acute pancreatitis. Before my attack, I didn’t have a clue what dietitians did. I assumed they might help people get healthier or lose weight. I’d never have thought they might help people with digestive diseases.

I am now back home and on the road to recovery, but not too long ago, I didn’t know what my pancreatitis diagnosis meant short and long term. I didn’t know what I could and couldn’t eat. After my attack, I had lost a lot of weight and was malnourished. I was also diagnosed with Type 3c diabetes (a type of diabetes associated with pancreatic disease).

There was so much conflicting information. I felt really overwhelmed.

I first saw a dietitian as part of the NHS team looking after me in hospital. My dietitian spoke to me about the importance of increasing certain food groups temporarily to return to better health. My dietitian explained that they needed to move me from being malnourished to healthy again. I was given great advice on what I should eat short-term to do just that, including which meals were best to order off the hospital menu. They discussed so many food options, so I didn’t feel like I was eating foods I didn’t enjoy. We also tried a variety of shakes, to work out which I enjoyed.

I was extremely malnourished and struggling to eat. My dietitian explained the need to put me on a feeding tube at one point. I really didn’t want to do this, but looking back – it was the best decision that was made. In short, my dietitian essentially saved my life.

I finally had someone I could ask questions, whenever I felt confused. I explained that I was confused between managing the diabetes/sugar intake, versus consuming enough calories and protein after losing so much weight during my hospital stay. My dietitian explained that the priority is getting me back to better health, and then we can discuss the diabetes. This was such a relief. I had answers, a support system.

If you’ve been diagnosed with a digestive disease and you’re confused by the conflicting (and often dangerous) information online, I’d encourage you to see a registered dietitian. They can really help and personalise what you need.

Our thanks to our colleagues at Guts UK for putting us in touch with Rebecca. 

Michael was receiving treatment for cancer of the tongue and had several serious further complications, battling through against the odds. He worked with dietitian Jennifer Van-Zant on his recovery, with the added challenge of the pandemic.

“Due to having cancer on the tongue and subsequently having dysphagia, I got to the stage where I could not eat or drink. I became undernourished and dehydrated as a result. I was in hospital for approximately three months due to cancer treatment and complications, and during that time, I had a Nasogastric Tube (NG) inserted, for about seven months.

“After contracting sepsis during my hospital stay, I was rushed into Critical Care, when I was put on a ventilator as my body started shutting down. My organs were failing and my bowel was disintegrating, and my wife and daughter were told that I wouldn't survive. However, I recovered after a week in CCU, and was transferred back to a ward and then carried on with my cancer treatment.

“When I was finally able to go home, I then had to attempt to drink and eat after a few months. Jennifer became my dietitian, where she advised myself and my wife on how to proceed and what to drink and eat. Because it was during the pandemic, our contact was via telephone and email, but Jennifer was amazing; so helpful. She talked us through the process, gave us advice, and suggested different drinks and soft foods to try. She regularly emailed or phoned to see how I was doing, to check on my weight, on my general wellbeing, and emailed my wife samples of different foods, milkshake drinks, sample meals for me to try.

“Jennifer also arranged with our GP the supply of sip feeds for me to drink, to build myself up. There were several errors made in the beginning with the prescription, between our GP surgery and the chemist, however, Jennifer sorted these out by sending letters to the GP and breaking down the dosages/bottle sizes.

“After a while of me using the drinks, it became apparent that I was unable to consume enough calories, so Jennifer suggested alternatives. She also sent us samples for me to try. When we had face to face appointments with Jennifer at the hospital, she always sent follow up emails with more suggestions, with more meal plans to help with my recovery.

“Jennifer regularly gave us advice and ideas on how to proceed with my attempts at drinking and eating, and offered continuous encouragement. We were able to contact her via telephone or email, any time we needed her help or advice. When we spoke to or met Jennifer face to face for appointments, she came across so lovely, so helpful and encouraging.”

Charlie received support from a dietitian to help with recovery from an eating disorder.

“I have received support from a dietitian for an eating disorder and found it very beneficial in my recovery. I received a meal plan that catered for my needs and I was given a range of choices which gave me more of an incentive to comply.

“The best thing about working with my dietitian was being heard and my voice being respected. They helped me understand the facts and realities of foods, and the benefits that food has on the body. It was helpful to have a dietitian that was firm enough to make sure I was getting the right nutrients but listened enough to let me have a choice and say in what my preferences were and didn’t force me into things we knew would not help.

“I feel that what helped me recover the most, with the support of a dietitian, is the good communication and sense of trust. If felt comfortable with them, enough to know when you need more or less support.”

Regina received support from a freelance dietitian, Fareeha Jay, about improving her diet and lifestyle.

“I received healthy eating and lifestyle advice from Fareeha, and her guidance has been life changing for me. I had multiple health conditions and was on insulin, metformin, gliclazide for 25 years. I was also on high blood pressure and cholesterol medication.

“After working with Fareeha and following her advice for over 18 months, I have not only come down from 122kg to 85 kg but I have also been taken off all my medications. I’m still overweight but my sugar levels are normal. Having no medications after 25 years of my life is a huge achievement for me and for her!

“The best thing about working with Fareeha was that not only was I getting advice about healthy eating from a dietitian, but her advice was tailored according to the foods I eat.

"Her recommendations were made with consideration for my culture, and there was no language barrier. The best thing working with her was that for the first time in many years, I was able to fast during Ramadan. She has changed my life and I am a new person!”

Following a cancer diagnosis, Rebecca suffered further serious complications that caused her to lose lots of weight and require significant rehab.

“I was diagnosed with stage 3 bowel cancer at the age of 30, which resulted in the need for surgery to remove my entire colon, including four tumours. Pre-op I was about 50 kg, and fairly fit considering the symptoms of colitis that I had experienced for eleven years. The surgery left me with a permanent ileostomy, and I was warned that I may never run safely again due to the extent of the surgery and scar. Hearing these words was the end of my world, and I was determined to try before I accepted defeat. 

“The surgery took its toll on my body and my initial recovery was a lot slower than expected, leading to the need for TPN feeding after several days of being nil-by-mouth with an NG tube. After 19 days in hospital, I was discharged home to “rest and put on some weight” before the chemotherapy that I would be starting six weeks later. My weight had dropped to 43 kg and I had to eat little and often to try and regain as much weight as possible.

“I managed to get 47 kg and went into chemotherapy as positively as I could, with six months of unknown hell ahead of me. Unfortunately, I experienced a reaction to the anti-emetics given with the chemo, and was admitted to Intensive Care two days later, after two medicine-induced seizures, and a series of four cardiac arrests. While sedated I had an NJ tube, but all of my hard work of trying to regain weight post-op was being undone, as my weight dropped down to 42 kg. After a week in ICU and the High Dependency Unit I became aware of the weight loss and the struggle to regain the weight I had lost began all over again.  

“An oncology specialist dietitian began working with me, helping me find high calorie foods that my new stoma could tolerate easily. The combination of a new ileostomy, chemotherapy and CPR chest compressions meant that my body was incredibly fragile, and I suffered nausea and vomiting for several months. My dietitian found me high-calorie prescription drinks, that I liked the taste of, to have three a day alongside six small meals, to help my body cope and regain strength. The prospect of an NJ tube (as an out-patient) pushed me to keep going with what felt like a never-ending battle! I kept visiting my dietitian after ICU until I could show that I had put on sufficient weight for her to discharge me. I reached the all-important 50 kg target five months later. 

“Sport, particularly running and swimming has played a huge role in my recovery, helping to give me a sense of purpose and enjoyment. I continue to use the high-calorie prescription drinks and will be forever grateful for the amazing work of my dietitian!” 

You can watch more about Rebecca’s amazing recovery and her return to running, including a half marathon after little over a year, in this piece for ITV. Our thanks to our friends at ICU Steps for putting us in touch with Rebecca.