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Jan 11, 2014 08:24 PM

If you could never eat again...

Nope, this isn't a "What would your last meal be?" thread.

This is a more serious discussion; the topic is a likely prospect for my very near future due to medical issues which have progressed slowly over the last several years.

In weighing pros and cons of my bleak medical options, I am faced with the reality that my stomach and intestines simply no longer work. It has been suggested to me by numerous physicians that I simply "give up food."

What is said so nonchalantly by these educated men has driven me into countless temper tantrum-like tizzies in recent weeks.

I have been doing lots of soul searching while cooped up in hospital beds, my own bed, the shower, bathtub, stuck in traffic, etc.

The possibility that I may have to give up food of all kinds FOREVER has me feeling hopeless and sorrowful beyond words. I am unsure if other food-loving folk would feel the same way.

To sum up my many rambling thoughts on this topic, I feel life probably isn't worth living if I can never eat again. I daydream constantly about meatballs on top of spaghetti, of roasted chickens and crisp mixed green salads, of rich chocolate cakes and sweet juicy strawberries. I haven't been able to eat any of these things for several years now so I do know what I am missing.

Your thoughts?

**I know this is a bleak topic, and please be aware I am not suicidal, but rather am considering turning down further medical treatment and interventions. I am currently fed through an IV for the majority of the day and night, but my body is reacting to it, so it is no longer a possibility. Please refrain from medical discussion here, as I've had "second opinions" to the umpteenth degree and am simply out of options. I am just curious about one simple question: How would you deal if you were told you could never eat again???**

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  1. I am so sorry. That is tragic. I bet you are grieving this with more to come, I would be.

    Food is very important, but there are so many other things in life that are far more important. I believe I would spend more time on my many hobbies that sometimes take a back seat to cooking and shopping,etc.

    My brother was a big foodie and due to his medical issues and surgery, he can only eat a half cup of ( very limited ) food per meal. He has refocused on other things and now has adjusted. On the positive side, he no longer spends any time on food or food related issues and he has so much more time to spend on other important things. He has taken up several new interests. Life still goes on!

    1 Reply
    1. re: sedimental

      I'm sorry to hear your brother's medical issues, but it sounds like he's found ways to cope. I have wondered about having my stomach completely removed; it might actually provide me with the possibility to continue to eat, but is considered "experimental" or too risky for my condition.

    2. I am so sorry, nothingswrong. This is awful news and as a fellow food lover who lives to eat I would also be devastated. I have had some experience with this in dealing with my mother who is on a soft food diet. Well, she is supposed to be. And, by soft food diet, the doctors mean nectar thickened liquids and even foods that you consider soft they claim are not OK. She has very severe multiple sclerosis and doesn't have the strength to chew or to coordinate chewing and swallowing so in the past year has been in the ICU three times for aspiration pneumonia. They recommended a feeding tube but as a food lover herself that was quickly rejected and we are trying to help her with this soft food diet that has been prescribed but she is miserable and hates it. She can't eat anything that she loves or even likes. In fact, just last week she called me in anger that she can't eat "any of the fruits that she likes" which at first seemed silly to me. I thought to myself, OK then don't eat fruit but then I realized that if I couldn't have all of the beloved fruits that I love or even just one of them I might be pretty angry too. I understand the way that you feel and think/know that I would probably feel similarly. And, from my experience with my mom, I know that you are not the only one for whom food is very important part of life and without it the world is a bleaker place. Again, I am so sorry to hear about this as you are a delight to have around and I love your posts.

      3 Replies
      1. re: fldhkybnva

        That is awful about your mother. The aspiration pneumonia can be very dangerous. I relate to her comment about the fruit thing... I said that same thing some years ago. Eventually I got used to not being able to eat fruit (it's been like 4 years since I've had a piece of fruit?!), and then it was vegetables, whole grains, and meat. Before that I'd had to cut out most fatty things, pre-prepared foods, fast food, restaurant food, etc. But then you're left with, like, nothing.

        I know so many people have food restrictions and allergies. One of my brothers has had deathly food allergies since birth and I've seen how hard it was for him growing up, but he's made the best of it and now as an adult he eats without fear and hasn't had an allergic reaction since childhood.

        I just can't wrap my head around not eating AT ALL. What do you do when you're feeling nibbly? Hungry? Stomach growling? Smelling food? No more trips to the grocery store (can you imagine?!). No more going out to eat. No cake on my birthday or Thanksgiving dinner. It's frightening.

        1. re: nothingswrong

          Frightening indeed, not sure how I would cope. I am admittedly not the strongest person I know :) will the change be immediate?

          1. re: fldhkybnva

            Yes, most likely. I suppose I could always just keep trying to eat, but the tube they are wanting to put in me has a huge risk of causing chronic intestinal obstructions. So it very well may be that if I do "accidentally" ingest something, it will land me in the hospital with a bowel obstruction. From what I've read of others in the same situation, eventually they just completely give up trying to nibble on anything because it's so painful.

            My boyfriend reminds me of how painful eating is now (in terms of causing nausea or getting sick). I'd like to say it's still worth it to try and eat, but I'm not sure anymore that it is. I've dwindled down to 80 lbs despite sitting all day at home just eating every time my stomach stops heaving. My doctors hospitalized me last week because they said I'm a "ticking time bomb" in terms of weight-related heart or organ failure. It's really scary.

            So I'm meeting with my team of doctors on Wednesday to make a decision. And then once a feeding tube is placed, I will not be allowed to eat for several weeks no matter what. I guess it will be a trial run for the future! After the wound has begun to heal, they will slowly reintroduce liquids to see if I can tolerate them, and then weeks later, I will be allowed to try very soft foods. But they are concerned firstly about the tube causing bowel obstructions and secondly about my stomach completely losing its ability to empty in that several week period from inactivity (given how f*cked it already is).

      2. This argument.

        But tasting isn't swallowing. I get no pleasure from swallowing.

        Chewing and tasting are great. Swallowing is an automatic thing I've gotten used to.

        I could give up swallowing.

        10 Replies
        1. re: sal_acid

          Thank you for reminding me of this. It hadn't occurred to me. I have chewed and spit foods I can't eat on occasion in the past and will have to ask my doctors if that will be allowed in the future.

          If it is, then essentially I could taste more foods than I've had in many years. I could probably taste and spit all day long! The possibilities are exciting. Thank you for the inadvertent suggestion :)

          1. re: nothingswrong

            Much like Metatron in the movie "Dogma".

                1. re: nothingswrong

                  Similar to bulimia, it is categorized as an eating disorder.

                  1. re: melpy

                    Yes, but bulimics have bad teeth from the stomach acid from intentional vomiting.

                    I'm not sure why chewing food and spitting it out would ruin one's teeth any more than chewing food and swallowing it like a normal person.

                    Not to say I'm disagreeing, I'm just not sure why it would ruin my teeth. I'm also not saying I'm going to do the chew/spit, as I already tried it and it sucks.

                    1. re: melpy

                      No it isn't spitting stuff out of your mouth is vastly different than vomiting.

                      No acid.

                      Melpy you are out of your depth.

                      1. re: sal_acid

                        Thanks, I couldn't figure that one out.

              1. re: sal_acid

                I was wondering the same thing. I imagine that tasting and chewing would create a high probability of accidentally swallowing, but i know I would be sorely tempted just to have the flavor of food in my mouth. It's not going to be too pleasant for those around you - but honestly - so what. If you need to spit everything out to live, then I can certainly learn to put up with being around you while you do so (preferably into a rather deep vessel that mostly hides things from view?)

                I know how hard it can be to sit and look at the french fries that were supposed to be left off my plate and not grab one, but I had the satisfaction of eating the grilled chicken next to it. Not at all the same thing as being around food and not being able to partake at all.

                So I'm guessing your consumption would be limited to thin broth (no solids), juices, etc? Or is even that too much? Hard for me to even contemplate.

                My thoughts and prayers are with you while you continue your struggle with this.

                1. re: KaimukiMan

                  Mmm, French fries! Those were my favorite food since I was a kid until all of this. I can't stomach them anymore at all, but make do with roasted potato wedges (peeled of course).

                  Juice, broth, etc. are difficult for me because I have a weak esophageal sphincter which causes me to accidentally burp up liquids.

                  So although it makes little sense to many people, it's actually MUCH easier for me to eat things like bread, crackers, etc. Something about having to chew and chew and then having a somewhat dry thing in my stomach not only helps me feel more settled, but also is easier to keep down.

                  Smoothies, shakes, soups, and really anything very hot or very cold will accidentally come up on its own. Not pleasant. So everything I eat is room temperature and starchy.

              2. I know that this isn't what you are asking, but this is not a medical opinion. I would recommend that you check out the "Kids with Food Allergies" website. They have a pretty active forum, and one of the subforums focuses entirely on no or very few foods and g- and ng-tubes for a variety of reasons. While most of the people on the board are parents of kids, there are some adults, and there is a lot of really great advice and support. I am a member there, and even though it is only me in my family with health issues, I find lots of relevant discussions that help me with asthma, GERD, delayed gastric emptying, and multiple food allergies. It was a great resource when I was going through testing for Eosinophilic Esophagitis and the docs thought I might need tube feeding.

                If I was told that I couldn't eat again, I think that I'd still want to cook, probably a lot - I get a lot of enjoyment out of cooking for my family, and because of my medical conditions there are a lot of things that I make that I can not eat.

                It is really, really hard to give up things that you love, even if you know they are essentially killing you. I recently had to go through applying for disability because of my severe asthma. I knew it had to be done, all of my docs said that I couldn't work anymore, but sitting in the hearing for the appeal and listening to an expert say that there were literally no jobs available for someone with my conditions and severity was really, really hard. I still don't think that I'm over it. But I am slowly finding things that help, and you will too.

                3 Replies
                1. re: jw615

                  Thanks for the website suggestion. I'm going to check it out right now. I have found quite a few online resources for people who are tube fed, but I'm struggling more with the aspect of not eating. I adapted very quickly to using my IV at home, and so I know that with most medical necessities, one can adapt no matter how icky it all seems beforehand (the tube I mean). But I'm scared about the psychological aspect. It is a huge loss not to be able to eat.

                  I remember reading this article years ago and it broke my heart; little did I know I'd end up just like this guy!:

                  I still have a strong desire to cook and bake for friends and family. In the last 2 days, I've made 2 types of homemade bread, 4 types of cookies, a cake, scones, 2 dinners, and about 300 homemade dog biscuits which I give to friends (and my own pups). I just love being around food, even moreso now that I can't enjoy it as much as I used to.

                  Thanks for your comment and I hope things look up for you. It sounds like you are coping well with all of your restrictions.

                  1. re: nothingswrong

                    I think that's one of the best things about that particular site - though a lot of it is aimed towards parents, there is a lot of good conversation about what you do for the issues with social eating and such.

                    For me personally, a lot of times I just have to choose not to go to social eating events, but that is a safety issue - I'm extensively sensitive to a few foods, so if they are going to be served, I just avoid the whole function.

                    1. re: jw615

                      I understand. I have attended most social events centered around eating and just not eaten for man years now. My friends are all used to it, and they don't pressure me at all. They always make sure there is something I can eat (even just crackers or toast), whether we're at a restaurant or at someone's house for a dinner party. My boyfriend is the same way.

                      My family on the other hand, oh my goodness. The recent holidays were a nightmare! I spent Christmas Eve and day too sick to get off the couch after making the trip to the host houses. And I had my lovely mother hovering over me yelling to "Just eat some damn meat! It'll make you feel better!" Lol. God bless her.

                2. < I am just curious about one simple question: How would you deal if you were told you could never eat again???**>

                  I will focus on your question. If I am told that I could never eat again, and assuming the people who told me know the truth, then I will be upset to say the very least. However, I can probably do the smelling, chewing and tasting without the ingesting. As such, I can still experience my food 90% without actually eating it. The problem is that this will work at home, but will not in a restaurant. The other thing I will do is to try to channel my focus in other things beside foods. Luckily, I have many other interests which I can easily fall back on.

                  11 Replies
                  1. re: Chemicalkinetics

                    I certainly hope the people telling me this are correct! I've gone through so many doctors here in Los Angeles. Specialists, nationally renowned "experts" and surgeons.

                    I will definitely be trying out the chewing and spitting thing today. I made some salted peanut butter cookie sandwiches with chocolate ganache filling last night and just chewed and spit through one and it was really delicious. I haven't been able to eat peanuts in many years. Perhaps you all are onto something! It's strange though, the urge to swallow chewed food is very strong. It's hard to spit out each bite, but I'll have to train myself.

                    I too have many MANY hobbies to fall back on, but I'd be lying if I said eating isn't one of my favorites.

                    1. re: nothingswrong

                      Yeah, some of my hobbies are eating related too. For example, I like beautiful kitchen knives and sharpening knives. Needless to say, these two hobbies are eating/cooking related. :)

                      I wish you the best. By the way, I find it easier to spill food out with a glass of water. I mean it will be rather laborsome to spill out sticky foods like peanut butter.

                      1. re: Chemicalkinetics

                        While I agree that this might be a possible solution, just putting in a warning here of potential complications from prolonged chewing and spitting but in this instance with limited options it might be the best idea. For example, with my mom who can't chew or barely swallow, the doctors continue to worry about everyday-getting-old health issues like cholesterol and heart disease so then she worries about eating pasta, candy or chocolate cake. My philosophy is that she is pretty much immobile, these days she can barely even talk and it's nearly impossible to understand her via phone, and has a limited number of foods she can eat so if the ones she can are unhealthy I tell her to go for it or at least I wouldn't worry about those other problems with larger ones looming overhead.

                        1. re: fldhkybnva

                          < just putting in a warning here of potential complications from prolonged chewing and spitting>

                          You didn't spell out the warning. What is it? I would think there is no more complication than chewing gum.

                          1. re: Chemicalkinetics

                            Food has many more calories than gum and since digestion starts in the mouth it stimulates multiple processes involved which are then activated but receive no feedback signal because the process is interrupted. The complications are long-term and occur in people with a chronic habit but can include dysregulation of insulin secretion and tooth decay due to increased activity of salivary glands which produces saliva meant to digest food which disappears and so acts on enamel to cause cavities, and also the the oral mucosa to cause irritation of the throat and ulcers. But again, not sure these concerns are relevant here but always a good idea to inform anyone else who might have this idea in mind as this is a recognized eating disorder under different circumstances.

                            1. re: fldhkybnva

                              I read about the tooth decay problem. It certainly sends a false signal to the body.

                              1. re: fldhkybnva

                                Thanks for sharing this. That's why I said I would ask my doctors if this is a possibility for me. I do know from spending 8 years as a mental health professional that "chewing and spitting" is a recognized eating disorder in some.

                                In the past, I have only chewed and spit (spat?) a handful of times. Almost exclusively with fresh fruit, since I long for it constantly but haven't been able to stomach it for so long. One little piece of fruit can (and has) landed me in the hospital. So I will maybe once a year chew a piece of fresh pineapple or a strawberry or peach and then spit it out, along with most of the juices/saliva. It's really gross and I don't do it in front of anyone, but I've said it before--the fresh gorgeous flavor of summer fruit will bring me to tears.

                                The dental issue is a serious one in patients with gastrointestinal disorders.

                                Anyway I don't enjoy the prospect of chewing and spitting much, but it's good to remember that it may be an option if I'm not allowed to swallow anything, just for when I get serious cravings. It will probably be safer than actually eating the food, but maybe not as a constant thing.

                                I do wonder how much saliva I am allowed to swallow as well, which I will have to run by my doctors. I am hoping I'm still allowed to drink liquids, in which case perhaps this would all be okay.

                                1. re: nothingswrong

                                  <the prospect of chewing and spitting much, >

                                  Well, I do that when I bake -- sometime -- just so I know how my bake goods are turning out.

                                  Chewing gum is actually the extreme. People who really chew gum can be chewing their gum hours at time and constantly. This really mess up the body feedback mechanism. The body thinks the food is coming, but nothing is coming. Saliva keeps on producing.

                                  I doubt you will be doing this. You will probably be more like wine taster or ice cream taster.

                                  Wine tasters spill wine out, and ice cream tasters often spill out ice cream....etc. It is fine if you are doing for a couple of minutes in a day.

                                  1. re: Chemicalkinetics

                                    "Chewing gum is actually the extreme. People who really chew gum can be chewing their gum hours at time and constantly. This really mess up the body feedback mechanism. The body thinks the food is coming, but nothing is coming. Saliva keeps on producing."

                                    Is this supported by medical evidence?

                                    I've been chewing a lot of gum for years now, as it helps a ton with my nausea. I'd estimate I chew about 4 pieces a day on average, for maybe 30 minutes each time. When I am especially nauseous and completely unable to eat/drink anything, I will probably chew gum nonstop for most of the day, using a new piece every hour or so.

                                    I don't know if that falls into the "extreme" category, but I do notice I chew gum a lot more than friends who also chew gum.

                                    My doctors have told me the excess saliva production is a GOOD thing in my case, as it helps combat the reverse peristalsis of my stomach and esophagus.

                                    I actually was just thinking yesterday that I believe I am "addicted" to gum in that I rely on it during the day and don't know what I would do without it (for nausea). If I am driving somewhere and realize I have no gum in my purse, I will literally be late to a meeting/work/event so I can stop and get gum. Lol.

                                    But I am very curious about this idea that it will mess up the feedback mechanism.

                                    1. re: nothingswrong

                                      Don't worry about it. I think whatever I read only applies to excessive gum chewing.

                                      This article points to a correlation between excessive gum chewing and headaches

                                      "Then this cross-section of Chewing’s target audience was asked to quit, cold turkey, for a month, and report any changes in their symptoms. They didn’t use any other therapies for their headaches during this time.

                                      Eighty-seven percent of the patients reported significant improvement, and of the 20 who agreed to go back to chewing gum afterward, all 20 immediately saw their symptoms come back."


                                      TMJ is another one, but that is to be expected.

                                      Sugar gums and sugar free gums have their own respective problem, but these problem have to do with the sweeteners.

                                      As for the hyperinsulinemia, I think that is only associate with nicotine gum.


                                      1. re: Chemicalkinetics

                                        Interesting, thank you.

                                        I do notice the TMJ thing but it doesn't bother me really. I'd rather have a headache/jaw ache than be nauseous.

                                        I do chew sugar-free gum, as you are kind of hard-pressed to find minty gums with real sugar these days! My dentist had also told me to chew sugar-free years ago and I guess it kind of stuck. I avoid fake sugars otherwise (no diet soda, none in my coffee, and never in baking/cooking) because I simply can't imagine any of them are good for you, but to be honest I hadn't really thought about the gum.

                                        At this point, I will explore any possible contributor to my poor health. I guess faux sugars will be up next :)