Overcoming Obstacles and Adjusting to Tube Feeding: Jack's Story

Claire Kariya RD, CNSC
May 2
7 min read

Jack is a 75 year old man who has been reliant on tube feeding for a decade. He connected with me in 2020 and offered to tell his story on my blog. At that time, he had overcome two separate significant health challenges- a stroke in 2012 and later oral cancer. When he required a feeding tube, Jack made the choice to use homemade blended food for his nutrition. Below is Jack's original blog contribution from 2020. At the end of the post you will find an update Jack kindly contributed recently.

Jack continues to dedicate countless hours volunteering in patient centered initiatives at the University Health Network in Toronto and is advocating for peer coaching to help other patients navigate the healthcare system and adjust to tube feeding. With his positive attitude and tube feeding insights, I don't think there could be a better person for that role. Thank you so much, Jack, for everything you do for the tube feeding community.

~ Claire

Tube fed adult G-tube. Walking in a field.

Jack's Tube Feeding Story

(2020)

I am tube fed as a result of late effects from throat cancer treatments four years ago. Everything goes straight into my lungs should I swallow food, liquid and my own saliva. Once my cancer treatment was finished, I was transitioned from the Princess Margaret Cancer Centre (Toronto) back into the community as an outpatient. There was a limited patient oriented discharge strategy. It became apparent that we, my family and I, were on our own for tube feeding.

The good news is that throughout treatment we were given a number of brochures and attended classes to learn now to manage treatment side effects and lifestyle changes. I also went to two “Get Back On Track” classes 12 weeks post treatments, to assist in the transition. The class was great for camaraderie with other people who had been through cancer treatment and there was a lot of good information disseminated about late effects, services to support us outside the Health network such as Wellspring, a support network of cancer survivors, exercise programs, meditation classes etc…. There was a psychologist's presentation as well as a dietitian's presentation. All good information except for those of us on feeding tubes.

Blended Food vs Tube Feeding Formula

The dietician's perspective and directive was that only formulae such as Boost and Ensure should be used for tube feeding. I was the outlier in this group because I had purchased a book, Complete Tube Feeding, Everything you need to know about tubefeeding, tube nutrition and blended diets, authored by Eric Aadhaar O'Gormon. So, I knew that blended food was also an option. At that point I had a G tube with a “pigtail” connection to my stomach. Inconvenient and prone to blockages.

I must say that of those of us on feeding tubes, 99% would transition back to eating orally. Post treatment, I had an speech-language pathologist appointment to assess my swallowing ability. This is when it was determined that I was unable to swallow without all the liquid draining into my lungs, causing violent aspiration. It was determined that my epiglottis was destroyed. I spent about twenty minutes digesting this information. It took me days to absorb and process this through the 4 A’s: Awareness, Anxiety/Anger, Acceptance and Action. I must say I spent some time in Anxiety to the point I went to the cancer psychologist at Princess Margaret Cancer Centre.

My Feeding Tube

In the "Action" phase we began researching alternatives to the G tube pigtail connection. We found a medical device manufacturer in Ohio that advertised low profile feeding tubes. Unfortunately they do not have a licence to sell in Canada. Through further research I found a manufacturer, Halyard (now Avanos), that distributes the MIC-KEY button low profile feeding tube. Further inquiry and lobbying for a MIC-KEY resulted in me getting my first "low profile" MIC-KEY, a 14 French diameter size.

Over the past two and a half years and six replacement procedures, I now have a very comfortable low profile G tube that is 20 French in diameter. It's a fire hose compared to my first G tube. I now change my own MIC-KEY tube every six months. I am able to do this myself after reading the manual and conversing with a nurse practitioner at Toronto General Hospital.

a feeding tube, extension set and blender for blenderized tube feeding — A 14 French low profile MIC-KEY feeding tube.

Adjusting to Life with a Feeding Tube

It took me three years to begin to feel "normal" and to be at ease with my new normal. I have set up a workstation at home and keep a daily journal where I make notes of my food, medication and exercise. I keep sleep, exercise and volunteer schedules. I am the chief cook in my family because I always loved to cook. We eat more healthy than we have in years, mostly organic with a minimum of red meat preferring fish chicken, vegetables and fruit. I also add turmeric, ground pepper and ginger root to all my blended foods. Once a day I add collagen to one blended meal.

At this point I have to interject that I had a stroke in 2012. It was the best and worst event I had experienced in my life. I say this because I found my humanity. I was a runner, paddler, cyclist, swimmer and all around athlete with unbridled energy and an ego as big as the all outdoors. This had been my lifestyle from as early as I could remember. My job fed this attitude, always competitive, always on. I had been a trader on two stock exchanges and finished my work career as a corporate sales manager.

My saving grace is I am married to my soulmate and she tempers my personality. Paula is the kindest person outside of my mom that I have ever met. When I had my stroke I had to relearn how to use the left side of my body. I also learned that the best positive recovery includes being socially connected with people, as well as committing 100% to therapy and exercise. Two months as an in-patient and six months as an out-patient at Toronto Rehabilitation gave me a great foundation to succeed. My experience with stroke recovery set me up to manage my cancer journey to the best possible outcome.

Advocating for Patients

I am part of the Patient Partnership Program at the University Health Network [UHN] which includes Princess Margaret Cancer Centre, Toronto General, Toronto Western Hospitals, Toronto Rehabilitation Institute and the Michener Education Institute. I cannot stress enough how satisfying it is to volunteer as a patient advocate. I am a repeat customer at UHN and they saved my life twice. I sit on five committees and one short term initiative as well as being active with the Princess Margaret Cancer Centre run/walk to conquer cancer program.

Living Life to the Fullest

My lifestyle is rich.

I swim using a training snorkel with a one way valve which allows me to swim without fear of aspirating water when I turn my face mid-stroke. I can pursue my passion for swimming three to four times per week. I use trek poles to walk 5 to 8 kms 5 days per week. The trek poles were originally to assist me after my stroke, now they're for fitness. I cycle throughout the spring, summer and autumn, practise tai chi 3 times per week and weight train 3 times per week.

Blended Food for Tube Feeding

I manage my daily tube feeding intake based upon my energy needs. One meal will include a two egg omelet with base ingredients, baby spinach, 1/2 avocado, turmeric, ginger, pepper, collagen, fried tomato, homemade toasted corn tortilla and water. Second meal will be a carbohydrate meal: steel cut oats, peanuts, raisins, 90% cocoa chocolate, unsweetened coconut, chia seeds, cinnamon, fruit, plain greek 3% yogurt, water.

I eat five times a day with portions around 650 ml to 750 ml. I have two to three cups of fair trade organic coffee per day. Twice a week I indulge myself with hot chocolate.

I 'eat' everywhere. I am a cheap dinner guest because I bring my own food. When at restaurants I usually order a takeaway meal to blend. I frequent coffee shops across the city while on "field trips" with friends. I stay away from processed sugar aside from the occasional blend of carrot birthday cake with orange juice.

Tube feeding blenderized recipe ingredients — Example of food I blend: broccoli, fried tomato compote with onions and garlic, corn, peas, cashew, ginger, garlic, turmeric bok choy, ginger, onion, garlic roast chicken breast, turmeric, ginger, lemon. I also add avocado, kale, baby spinach, ground pepper, celery leaves, cucumber, olive oil, apple cider vinegar and water. I use a Vitamix blender.

Tube feeding, while devastating news at the time of diagnosis, has been very positive. We have lots of humorous moments with an occasional frustration.

"Tube feeding hasn't slowed me down, it has freed me."

Life is good.

Jack

Update from Jack - 2026

I re-read my earlier submission in 2020. While the information has remained largely current, there have been some interesting changes that challenge me. I suspect these changes are part of my aging process very much like my age cohort minus the side affects from cancer treatments. I am now 75 and ten years cancer free. I remain tube feed dependent. I no longer dream I can eat and swallow "normally".

I change my own MIC-KEY, low profile feeding tube. In 2020 I had increased the tube size to FR20 which was a significant improvement from the FR14 I started. I have increased the tube size to FR 24 (24 mm) which was a game changer. Blends can be thicker with few blockages. I do use oral science liquids for concentrated Protein. I follow a diet that is high in protein to maintain muscle supplementing with creatine after weight bearing workouts. In short I am thriving, living my best life.

I have embarked on an additional volunteer path, Peer Navigator for patients with Head and Neck Cancer from diagnosis, treatments and recovery management. We are a group of head and neck cancer survivors managing patients who choose us from this pool on the website, https://www.peernavigation.ca/. We are based in Toronto, Ontario, Canada in the University Health Network at Princess Margaret Cancer Centre.

We have been live for just under a year and in that time a I have assisted or currently assisting 4 patients navigating their own head and neck cancer journeys. Our value proposition is navigating the journey with our assistance helps patients confidently manage their joiurney with minimal roadblocks. Each patient works with their own navigator of their choosing for three months, longer if there is a perceived need.

We support patients through the lens of the Patient Declaration of Values: 1. Respect and Dignity, 2. Empathy and Compassion, 3. Transparency, 4. Accountability and 5. Equity and Partnership. The PeerNav program is currently in the evaluation phase so it is open to all patients who request this type of peer head and neck cancer navigation service so I invite all to access the website https://www.peernavigation.ca/ to request a peer navigator.

Thank you,

Jack Ireland

Patient Partner

UHN Peer Navigator Head and Neck Cancer PMCC

jackireland5@gmail.com