What are the lifestyle changes with permanent G-Tube?

Hi Phil,
Sorry to hear about your pending decision and swallowing challenges. I have been on a g-tube since my botched operation over a year ago.
I have silent aspiration when i eat and cannot drink any thing now after radiation without coughing. I hate to say permanent as I am hopeful. I still eat some to keep the muscles at their best. And am very careful about a clean mouth before eating so if I aspirate it does not turn into pneumonia. Get a tongue scrapper to make sure.
Life with a peg removes the stress around trying to get enough calories in and reduces risk of pneumonia since you are eating. It is tough to watch others eat and not participate. .. times like Thanksgiving and Christmas can be depressing. Maybe some type of combination would work for you.
Peg tube cleanliness is important as they tend to leak a little. This isn't too bad but should be watched to avoid infection. My first one had the tube extender attached and got pulled on clothing when I jogged and after a restless night in bed. There will also probably be extra tissues that grows around the peg as your body tries to heal the incision around the peg which can bleed. I exchanged my original one for a miki (spelling). These need to be changed out periodically...no big deal. 2 minutes process. I have heard that tubes may cause damage to the stomach lining but low risk and I had no choice. Be sure to ask you doctor. Major downside...no submerging in water...no baths or swimming due to risk of infection. Showering is ok.
Hope this helps,
Donna

I'm writing this early Saturday morning while getting my "breakfast" through my G-Tube. I've had the tube since July of 2024 and without it I'd probably be dead. Mainly because trying to find nutritious foods that I could actually swallow without aspirating was extremely difficult. I was starving myself, becoming more frail and my immune system was extremely compromised. My life has changed because there are very few social activities that are not accompanied without food. Needless to say our restaurant bill is next to nothing. I'm lucky that I do like to cook and bake so I make most of my husband's dinners and he helps me with the tube. I am able to keep up with my hobbies of playing and collecting Mah Jongg sets, knitting, quilting, reading and baking. I've had a few problems with the tube but they were fixed. I am on my third tube, they last anywhere between 6 - 8 months and are easily replaced. Travel is confined but that might be my choice not the choice of others with tubes. More restrictions on my life style are because of my immune system rather than the tube. It took me about a year before I realized I'd be better off with the tube. I wish I had done it before I became so weak. My worry then was the G-tube would shorten my life and make it difficult - the actual opposite has happened, it has added time to my life and for the most part ease. Someone else has added about the necessity of cleanliness with the tube - a must. Also, I have purchase Waterproof PD Dialysis Catheter Wound Cover Shields so I can shower or bathe normally. My surgeon said I could go swimming but I'm not going to chance it. I'll have to get more than one opinion. I hope this helps. Good luck on your journey.

Hi Phil,
I have been relying on a PEG tube for nutrition and hydration for the past 14 months. Every 6 months the tube is replaced with a new one. In the first couple of months I was eating foods such as mashed potatoes, pumpkin pie, guacamole with crackers and a few other foods that I thought I was managing OK. However, I ended up in the ER a couple of times with aspiration pneumonia. I had a swallowing test and found that I was actually aspirating all consistencies of foods that I thought were safe. I have been 100% on the PEG tube for the past 12 months with the exception of trying to swallow a very small amount of carbonated water each day to freshen my mouth and loosen phlegm from radiation. I will need to use the tube for the rest of my days. It is depressing at times in social settings where food is often the center of attention. Meals tend to be more of a necessary chore rather than a source of enjoyment and can limit social engagements, travel and may result in isolation if not careful.
I have been using a syringe for injecting my formula and it takes 10-15 minutes for a meal and hydration. On the good side, your meals require no cooking, planning or shopping. I order my formula monthly and it is delivered to my door by UPS. My insurance covers the cost of formula and apparatus for administration of the formula. The PEG tube also provides an easy way for administering medications via the tube as swallowing pills is out of the question. Some tablets can be crushed and dissolved in water and others can be found in liquid alternatives.
In the first 6 months, a small amount of granulation tissue would appear around the stoma but now it appears to be well healed. I change the gauze IV sponge every day after showering and I no longer see any bleeding or weeping of fluids from around the PEG. My weight is stable and the whole process is routine now and although I initially resisted getting the PEG tube, I have to admit that it probably saved my life as aspiration pneumonia was a real threat. If you have not had a dynamic swallowing test, it might be something to consider and could reveal useful information regarding your aspiration of a variety of food consistencies. All good wishes,
Gary

@hillx001
Hi Gary,
Thank You so much for your response.
I’m 76 yr old. 7 yr out from surgery and treatment. I have had at least 5 swallow studies over that period. All of my cancer related to my cancer was at the Mayo Clinic in Rochester MN.
I have contacted the Mayo and am in the process of scheduling another swallow study and related appointments.
I have not very consistent with doing my swallow exercises as prescribed. I was wondering if you had need doing swallowing exercises as part of your recovery. Also, would you please share how old you are?
Thanks,
I appreciate it a lot.
Live your best life. It’s all we have.
Phil

@omaest
Hello,
Thank you so much for your insight.
I had a G-Tube for 4-5 months after my treatment for tonsil cancer. During my recovery I initially had a hard time maintaining my weight. With the tube and eating it took 3000-4000 calories just to maintain my weight.
Thanks for sharing your experiences about cooking, socializing around food, travel, and that the tube is a life saver.
My life partner, Jeanne has been with me all the way. She is an angel.
Wishing you a good life,
Phil

@praying4miracle
Donna,
Thank you so much. This helps me a lot. I will talk to the Dr about stomach lining damage. I’m setting up appointments now to go to the Mayo Clinic, Rochester MN
Best life,
Phil

@hillx001 Your experience is very similar to mine. Thanks for sharing. Do you take anything by mouth? I still sip a little ice cream laced coffee in the morning and a swallow of 7-up or some other carbonated beverage at other times in the day. Mainly, to clear phlegm. Take care. PS: Are your tube changes regularly scheduled or do wait until the balloon deflates or other problems?

@lummy
Hi Phil,
I am 80 years old and 17 years out of treatment with radiation and chemotherapy for SCC of base of the tongue. All of my cancer treatment was at the University of Minnesota Masonic Cancer Center. My first experience with the PEG tube was before I started treatment and it was recommended that I should get the tube installed while I was feeling good. I resisted at first, but eventually, I saw the wisdom in having the tube placed early. The mouth sores and scar tissue in my esophagus made eating and swallowing almost impossible. I lost 60 pounds and had difficulty maintaining hydration. The PEG tube was what kept me alive. However, I had to relearn how to swallow correctly through therapy. Initially, I was quite compliant with performing swallowing exercises, but less so after my weight stabilized and the tube was removed. I had that initial tube for about 7 months before it was removed.

My swallowing problems continued. My esophagus was very constricted at about 3-4mm in diameter and every year I would have a dilation of my esophagus to improve my ability to swallow. After 8-10 years I stopped the dilations of the esophagus when the last procedure resulted in a paresis of the vocal cords (partial paralysis) which exacerbated my swallowing problems and led to problems with aspiration, especially thin liquids. Over the next several years there was a gradual deterioration of my ability to swallow anything safely until in January of 2025 when it was suggested that I get a PEG tube and use it exclusively for nutrition and hydration.
I hope that answers your questions. All good wishes,
Gary

@omaest
I do not take any solid food by mouth at all. I do take a few sips of carbonated water with some flavoring added each day to freshen my mouth and it helps to remove the phlegm. It usually causes a lot of coughing, so I limit my intake to a few small sips. My tube changes are set up to be at 6 month intervals automatically.
All good wishes,
Gary

I have a question for everybody. I have a Mic-key G-Tube. I had to go to ER 2 months ago when my tube came out. Who do you all use to change your G-Tube out? It is expensive to go to ER and my gastroenterologist only does them in the hospital so they want to schedule for a whole procedure. Any advice?