My husband is almost 6 weeks post treatment. I thought it might be helpful for someone in the future to know where we are at this point with regaining the ability to eat and move toward getting the PEG tube out. The struggle to eat any significant calories is real. He is perfectly able to swallow but finds most foods and many liquids repulsive. He is slowly starting to expand the things he is drinking. At then end of treatment he was totally PEG dependent for all liquids and nutrition except for swallowing meds.
Right now he can drink Boost/Ensure but not enough to meet his calorie requirements. He also drinks green tea and peach tea, hot and cold. He also now drinks Almond milk, water, Lactaid, Sprite, and Ginger Ale. He no longer can tolerate shakes of any kind but I'm hoping maybe soon. No eggs. He got sick on those during treatment and says he is afraid he may be off them for life. He will eat Lipton Noodle Soup, not the one with chicken pieces, only noodles and only the Lipton brand. No other soups are things he can even consider right now. He can barely tolerate mashed potatoes but will eat them. He finds baked potatoes and sweet potatoes as tasty as spackle or cotton, so those are a no go. (Maybe in a few weeks he will be able to eat these.) So far nothing with pasta of any kind has worked for him. He's tried cantaloupe, peaches and watermelon and did not gag.
Starting this week we sit down for one meal together. I prepare small amounts of 2 or 3 things for him to try. Sometimes it is something he has found acceptable before and then something he hasn't tried recently. I just feel like it is important to start seeing the rituals, smells and textures of eating as part of his life again. This part of the recovery has been so much harder than we expected. Since he can swallow we just assumed the desire to eat and the taste of foods would begin to return around now. He simply has zero appetite or interest in food. He looks at food and wants to eat it. Sometimes he says it even smells good but then when he tries to eat it he finds he has an aversion to it that makes him feel completely repulsed. It is still early in the recovery process but since this has been hard I thought sharing his fight with food might be helpful to someone else. He verbalizes that he fears never being able to eat enough to get the PEG out. I totally feel like he will but it is hard for him to see through his confusion about why he does not have more interest in food to feel certain for himself. I'll post about his progress again in a few weeks.
I've searched this site and read everything I can find. I found many helpful hints and it has helped me to know what worked for others. Everyone is different but the posts have been helpful in giving us ideas.
