HOME > Chowhound > General Topics >

Discussion

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???**

  1. Click to Upload a photo (10 MB limit)
Delete
  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 sucks...no 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!:
                  http://www.esquire.com/features/chron...

                  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."

                                      http://www.theatlantic.com/health/arc...

                                      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.

                                      http://www.ncbi.nlm.nih.gov/pubmed/87...

                                      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 :)

                    2. I'm sorry, nothingswrong, that is a bleak position to face, for sure. I have a medical condition that is similar to yours, perhaps even the same as yours, although not as severe as yours (yet.) I can still eat but very small meals. I get sad and frustrated easily since I love to cook and eat, but can only sample very small portions of foods or else risk becoming very ill. But I try to remember that at least I can do that much, and I am grateful for everyday that I feel well enough to eat at all and keep food down and enjoy it.

                      I wanted to link you to this woman's blog, as she also does not eat, ever, due to medical conditions. Perhaps you can find some...perhaps not comfort, but at least a sense that you're not alone, from reading her story. http://livingwithgp.com/

                      4 Replies
                      1. re: Maggiethecat

                        Yes, sounds like the same condition. When I first got sick 9 years ago, things weren't so bad. There was a period of readjustment for sure, and many many sick nights as I weeded out my new "bad foods." But every few years, I'd suddenly take a turn for the worse out of nowhere and even more foods would get crossed off the list.

                        Today I'm left with maybe 5 foods I eat on repeat, and even a few saltine crackers can cause hours and hours of gagging or dry heaving later.

                        That blog is one of the first I found when I got sick, and I actually just spent an hour or two re-browsing it yesterday before posting this thread. I had some friends over and we were discussing feeding tube options, and they wanted to see photos, so I showed them some of Kirby's pics. She has documented her life with GP very well.

                        Thank you for the reminder to enjoy every day that I have even a brief respite from being sick. This is truly an exhausting and debilitating illness. I couldn't have ever imagined how horrid it would be to have what feels like food poisoning 24/7.

                        1. re: nothingswrong

                          I know I never really answered your original question (how would you feel if faced with the prospect of never being able to eat again), I guess because I try not to think about it...because it HAS occurred to me that I may someday find myself in your or Kirby's situation where I may not be able to eat, and honestly the thought absolutely terrifies me. I wish you the absolute best, whatever your decision with the feeding tube is.

                          1. re: Maggiethecat

                            Thank you, I appreciate it.

                            I never thought I would EVER find myself in this position in a million years. To the best of my knowledge, this disease is not supposed to be progressive, so my doctors and I are stumped as to why I continue to decline in health. The big (and only) hope is that there is something wrong we have still not discovered.

                            As sick as I felt a few years ago, had I stayed at that quality of life forever, I would be totally satisfied. I certainly hope you never are faced with this decision.

                        2. re: Maggiethecat

                          Wow, thanks for the link! I just spent most of the day browsing that site and am not only quite impressed with Kirby, but learned a great deal.

                        3. I really cannot answer the OP's question with any confidence. Although I know that I would not deal with the situation well. I'm happy to describe myself as a foody and I know that food forms an important part of my daily life and, indeed, an important part of my relationship with my partner. The thought of being fed through an IV for the rest of my life is just awful.

                          I would hope that I might find solace in other apsects of my life and, indeed, with my partner but, at this hypothetical distance, I would have no confidence in success. Only the OP knows how s/he is feeling about whether life should go on in the circumstances and I can only wish that s/he is able to reach a decision with her/his loved ones.

                          4 Replies
                          1. re: Harters

                            Thanks for your comment. My family and friends have been urging me to stay positive, go ahead and do whatever needs to be done to stay alive, and they are there for me through all of this awful medical stuff. But this is all such a personal decision and I keep flip-flopping on which direction to go in. I've spoken with psychologists, religious advisors, and others with similar conditions.

                            I have other things in life that make me happy obviously, and many things I have yet to do. But I'm just so damn hungry, lol!

                            1. re: Harters

                              Since my post, I've heard that an acquiantance who I have not seen for a goodly while has died. The last time I saw him was at his 70th birthday party. He was a great food lover and, with his wife being a good cook, they had a perfect partnership. For the last three years of his life, his medical condition meant he was fed through IV. I know Tom will have borne this with resiliance - it was the nature of the man - but I understand it was missing his wife's food that he talked about more than anything else. He had religious faith and I'm sure that he drew comfort from his god.

                              1. re: Harters

                                I'm so sorry to hear about your loss Harters. I know it is cliché, but I hope he is in a place where he is no longer suffering (and able to eat to his heart's content!).

                                I'm not particularly religious, though I was raised so. But I do take comfort in thinking of an alternate life or an afterlife where I'll be free from nausea and pain and weakness.

                                Again, condolences about your friend.

                                1. re: nothingswrong

                                  Thanks for your thoughts. I am a convinced athiest but I understand the faith that others may have.

                            2. I'm "short-gut" so, yeah, your topic is not "merely academic" to me.

                              Give me some time to read through the responses and and think about this.
                              (from a fellow food lover)

                              1 Reply
                              1. re: pedalfaster

                                I have a few short-gut friends. One has such a limited diet, she may as well not be eating either. Take your time, I'd be interested to hear your reply. Thanks!

                              2. So, judging from your numerous posts on the baking thread and the WFD thread, can we assume that your issues have subsided or that your health has improved significantly?

                                I take it no feeding tube has been inserted, either?

                                It does sound like you've been eating quite well lately, which is great news!

                                16 Replies
                                1. re: linguafood

                                  Nope, my issues haven't subsided! I just keep trying to pile the food in with varying results. Sometimes I can't eat more than a bite, and some days I can't eat at all (which is what the IV nutrition is for). In the last few weeks, I've been up all night (and I mean ALL night) with pain and nausea probably 5 out of 7 days. Mornings are also awful, with cramping pain, nausea, and sometimes dry heaving. But I like food and so am essentially doing this to myself.

                                  Since my condition is "idiopathic," my doctors are unsure of whether or not it will continue to progress, or whether continuing to eat right now is making it worse. Symptomatically, yes, eating makes me feel way worse than not. But not eating introduces the risk of becoming dependent on TPN (IV nutrition), as well as further damaging/slowing my gut motility.

                                  They want me to give my stomach a "complete rest": no food, no liquids, no chewing gum, etc. for the foreseeable future.

                                  I decided I can't do that. I opted not to get a feeding tube placed again last week when I went into the hospital. This is all totally against medical advice (and my family's urging).

                                  Incidentally I am going through a fairly decent patch right now. It's cyclical--2 weeks of decent calorie intake (maybe 1,000 a day) and then I'll have 2 weeks of virtually no oral intake. So I'm enjoying it for now.

                                  The only bright news in all of this is that since I have an idiopathic condition, there is a possibility that:

                                  a) One day we'll figure out what caused it and be able to fix it
                                  b) It will somehow spontaneously get better

                                  For now, there is no cure and minimal treatment.

                                  1. re: nothingswrong

                                    Ugh, sorry to hear that. I guess all those baking and cooking adventures gave me the wrong impression.

                                    It really sounds awful.....

                                    1. re: linguafood

                                      It is definitely a bit of a bummer! I try to stay positive but it's hard. I know it could be much worse.

                                      TBH I think I give out "the wrong impression" often because the reality of my situation is kind of bleak. Unable to run errands by myself, can't stand up for more than maybe 15 minutes at a time, can't even drive myself anywhere without getting carsick (motion sickness is another pleasant symptom from this illness).

                                      I notice myself saying things to people which are not untrue, but which lead them to think my life is a bit more normal than it is. Which leads to many invitations out to eat, to parties, etc. which I have to politely decline, which in turn leads to people thinking I'm avoiding them when in reality I simply can't get there (because of the car sickness thing) or what have you.

                                      If I told the "full" truth all the time, it would really be a buzz kill. That I had to pull over 15 times to dry heave on the way to someone's house, that I spent all morning glued to the toilet, or that those 6 hours where I didn't answer my phone or return texts were spent curled in a ball trying to stop gagging.

                                      It doesn't make for pleasant conversation, but that is my daily life in a nutshell! So I try and focus on the nice things and leave the icky stuff out when possible.

                                      I hope that makes sense.

                                      1. re: nothingswrong

                                        wow this sounds just like my mom s few years back... they did every test known on her... prodded her poked her Cat scanned MRIed bloodedtested gied eveeeeerything....finalllllllly they did a veinagram on her brain... and discovered a series of small collapsed blood vessles in her brain that were unable to picked up on anyother test...
                                        I know when she was going through it.. she got soooo depressed..But she would cheer up when it came time to plan parties or menus.. and loved to feed other people. She still loved to go through magazines and now her pinterest board(when she has bad days)

                                        1. re: girloftheworld

                                          That's interesting, thank you for sharing. I'm sorry to hear about your mother btw.

                                          Were they able to fix it at all?

                                          My doctors have tested me for something called Superior Mesenteric Artery Syndrome (SMAS) and Celiac Artery Compression, but both tests came back normal. They had ordered a brain MRI and CT with contrast but it got pushed aside due to a prolonged emergency hospitalization.

                                          I may ask for it to be reordered just to see if anything comes up. I have read of several issues with nerve/blood vessel compression which can cause what I have.

                                          I hope your mother is doing okay.

                                          1. re: nothingswrong

                                            They put in two little stints that help the blood flow and she recovered...it has taken a harder time recovering from the two years of being a "manatee" as she calls it and on so many drugs. She had the contrast MRIs and nothing ever showed up it was her eye doctor who ordered the veinagram from her nerologist and found the problem...she still sometimes has night time reflux but nothing like what she was living with.... I remember once thinking " wow that is love" when without even thinking my stepdad took off his shirt and handed it to my mom as she just spontantosly started vomiting in the front seat.( sorry if that is tmi)
                                            If she forgets her medicine now or gets overly tiredshe can have problems but food is an amazing part of our lives.

                                            1. re: girloftheworld

                                              Wow, that's amazing.

                                              Do you mind if I ask why her eye doctor ordered the veinagram???

                                              A few months ago, I randomly woke up with a blind spot in one eye. I have 20/20 vision in both eyes, never had any issues with them. After 3 days of this spot, I finally went into the ER, worried about a retinal detachment. They've since dilated my eyes 3 times and can't figure it out. I'm supposed to go back in March for a full day of tests.

                                              This all coincided with my stomach taking a major turn, and preceded my hospitalization by maybe 2 weeks. It seemed like a weird coincidence and I'm convinced it's somehow related. I'm 29 years old, my vision shouldn't be going already!

                                              There are so many awful things that happen to the body with malnutrition.

                                              That story about your mother vomiting in the car made me smile (strangely enough!). It is so hard to find someone who will stick by you through a chronic illness of any sort, but add in a good dose of body fluids and lots of men are running for the hills. My boyfriend has stuck with me for 3 years now, we've had our ups and downs and once in a while he just gets so frustrated about my health he breaks down, but it really makes you grateful to have someone like that in your life who loves you and still thinks you're pretty despite everything.

                                              I'm glad she still cooks for the family and participates in all of that the best she can. And I hope she continues to feel better.

                                              1. re: nothingswrong

                                                her right eye was losing vision...she said it was like looking up through a swiming pool..then she would be walking and it would be like "one of those dolls whose eyes open and close when you tilt their head" she would have to tilt her head just right to see...and she said it was like she had to concentrate to see like force her brain to tell her eyes to see...so the eye doctor realized it wasnt a vision thing..meaning it couldnt be corrected with lenses it was a brain not giving the eyes the right signal thing...
                                                for awhile she thought she was going crazy... they tried to say MS and Cronic Fatigue..all sorts of things.. But the eye doctor found it.

                                                1. re: girloftheworld

                                                  Very interesting. Sounds pretty awful, but I'm glad they figured it out.

                                                  On the long shot that your mother's experience might be similar to mine, I'm going to ask my doctors about the vein test, and get those MRIs reordered as well.

                                                  My condition has a name, but my doctors believe it is secondary to (caused by) something else and they just can't figure it out. I've been tested for scleroderma, MS, etc. and nothing comes up. We are getting into testing for rarer and rarer conditions.

                                                  Anyway, thank you so much for sharing your experience!

                                                  1. re: nothingswrong

                                                    ya.. my mom had something else to that was caused by the the veins being colapsed ... I hope the figure you out... 29 is so young... there is hope

                                        2. re: nothingswrong

                                          Everything you said makes perfect sense. I totally get that people take for granted that you are well because you don't make a big deal out of what is obviously a huge deal. Being sick like we are can become something we don't discuss because at some point people just stop wanting to hear about it. Not that they are being mean, it is just depressing to hear. Hope that you are doing well lately. I am on the longest stretch of Wellness in the whole time i have had this illness. I wish i could bottle it up and send some to you.

                                          1. re: suzigirl

                                            Woot to wellness! And, double yes to all that you said!

                                            1. re: suzigirl

                                              Thanks Suzigirl. I'm so glad you're on a good streak! Keep doing whatever you're doing. A reprieve from this illness is like having a vacation from your body.

                                              I've been doing okay. Taking lots of meds and getting lots of sleep. The biggest things I've been doing differently are a change in mental attitude and not really leaving the house.

                                              The attitude adjustment has helped me to just embrace the "good days," no matter how un-good they might seem to a healthy person. And to cut myself some serious slack when I'm not feeling well. Previously I've gotten pretty bummed about it, silently belittling myself for not being able to even take out the garbage. It was all on a subconscious level really, but I'd sit and stew about all the things I miss out on.

                                              My brother just got married over the weekend in Australia and I'm the only member of the family who wasn't able to attend. I was sent photo after photo throughout the 2 week affair. And I only felt sad once, seeing my siblings all standing together in a wedding portrait. The rest of the time, it just felt like yet another family vacation I've missed out on, which I've grieved aplenty over the last few years.

                                              Yeah, it sucks I missed this once-in-a-lifetime event, but what can you do? I've been keeping myself busy at home with art, good movies, crocheting some baby blankets for a baby shower next week, sewing, I redecorated my bedroom, and even bought a jigsaw puzzle (lol!) which I've almost finished.

                                              I also have been saving little bits of money here and there for months now and have just about enough to take a little trip of my own. Traveling is VERY complicated for me, I have to be sure I'm near a hospital, get all my IV supplies procured beforehand and make sure they can be refrigerated, that I have access to an oven because I have to cook my own food, etc. etc. I'm thinking of doing a week or two in Palm Springs in a vacation rental. I can't fly, but driving out there should be doable.

                                              As for staying at home most of the time, it just eliminates so much of my nausea to be in a quiet and calm environment, able to relax after I eat. I am very deconditioned from the weight loss and just standing or walking after I eat causes so much stress on my stomach that I may involuntarily start vomiting.

                                              I'm looking into starting physical therapy soon to try and reverse the cachexia and muscle wasting. It will be impossible through diet alone. My doctors keep saying it might be "too far to go back," but I'm willing to put in the work. It's been a loooooong time since I've "needed" exercise in any capacity and I think the payoff will feel so rewarding if we can conquer this.

                                              Anyway, yes, here's to wellness and continued improvement for all of us!

                                        3. re: nothingswrong

                                          Thanks for the update.
                                          I'm the 'hound with short-gut(bowel) who posted below (and then "lost" this thread for some reason--wasn't showing up in my discussions list?).
                                          Anyhow, great to read an update!

                                          Did I see that you actually gained some weight? That is fabulous!!! I did too, over the holidays and my NP was doing a little happy-dance at my last appointment.

                                          I also saw a question about your interest in food. I totally get that. While eating is great, that's certainly not all food is about for me. Spending time in the kitchen and cooking is a creative outlet. Often I cook, even when I can't eat the end result. I am a painter by training, and I see food, and the creative process behind it, as sort of a "craft" or folk art. I find it very calming...and I enjoy sharing my food with the people in my life.I suppose I am kind of like the knitter who cannot possibly wear all the scarves she creates; so she gifts them to friends and family.

                                          Enough of my rambling....take care and stay warm (not sure of your locale but I am in the frigid Midwest. Yes I will make a casserole tonight, Something with cabbage and potatoes....)

                                          1. re: pedalfaster

                                            Glad to hear you gained some weight too! It's such a huge deal for me, and so difficult, I get really proud of myself, lol.

                                            How funny, I'm also a fine artist. Started doing commissioned portraits back in high school, then I worked for years in mental health but switched over to doing art full time, both portraits from home and in fashion and art production.

                                            I agree with everything you said about preparing food. A lot of the food I prepare (and post about here) I am unable to eat, or at least eat in a normal quantity. I almost always taste it, but sometimes it's limited to literally just a taste.

                                            Consequently, my taste buds have gotten very sensitive. I have to chew my food very very thoroughly so I get a good minute or more of tasting one bite before it's swallowed. Coupled with the bland diet I must adhere to, I'm hyperaware of nuances in flavorful foods. Sometimes I find it overwhelming.

                                            I'm glad I have a steady stream of friends and family who enjoy my baking, so I can unload things on them, but I'd like to find other places to share the food with (like a food bank or homeless shelter).

                                            Glad to hear you are doing a bit better, and I hope you are staying warm!!! I'm in sunny Los Angeles, wore a tank top today and a silk dress out last night! There's no worry of freezing here :)

                                      2. Hi nothingswrong, I would just like to say that I have really, really enjoyed your posts on this forum and I'm devastated to learn of your condition. Your sense of adventure and appreciation of food comes through loud and clear in your comments. I will be thinking of you and sending positive thoughts your way . . . and hoping that you find a solution. Can I give you a virtual hug? If so, please consider yourself hugged x1M Best wishes, MrsP

                                        1 Reply
                                        1. re: MrsPatmore

                                          Aww, thank you Mrs. P!

                                          Any hugs (virtual or not) are greatly appreciated :)

                                        2. this is simply unfathomable to me, and i'm so very sorry for you. your condition sounds terrible, and i can only hope it gets better for you. and soon. i totally get passing on the tube - i've lately been pondering quality of life issues re my father - but you may end up realizing that the lack of quality you're having now may be much worse than not being able to eat. it's a terrible choice to have to make. did you end up finding out if you could do the chew-and-spit-out thing?

                                          i would hope in your situation i would, as others have said, learn to focus energies and new-found time to pursue other interests - but that's all dependent on how much your health allows you to pursue anything.

                                          i'm hoping we hear good news from you soon, nothingswrong. your moniker speaks volumes about your outlook on life. take good care.

                                          4 Replies
                                          1. re: mariacarmen

                                            Thank you!

                                            I have definitely thought about the quality of life thing, tube or no tube... It's possible the tube could give me more energy, help reverse the cachexia, etc. That's what the doctors keep saying.

                                            Reality is, I don't mind being so fatigued. It's the nausea that bothers me. Being tired and worn out is like the last thing on my mind. Nausea will knock you on your butt. Nobody can function when they feel like puking (or are puking) 24/7.

                                            As to the chew and spit, I actually started trying it after this thread and it wasn't pleasant at all. It is very hard to spit the food out once you've chewed it to death... it's a natural reflex to want to swallow. After I did it a few times (and tasted some really delicious things I normally wouldn't get to), it started making me gag.

                                            Don't know if it just takes practice, but I will be shelving that idea for now :)

                                            Sorry to hear about your father. With everything happening with my own health, I've really started to feel that whatever the patient wants, the patient should get (within reason). There are plenty of people who would want to live on a respirator, quadriplegic, feeding tube, comatose, etc. and for others it would be intolerable.

                                            To my parents, siblings, and boyfriend, being on a feeding tube with no oral intake for the rest of my life sounds fine. But it's not their body, not their decision.

                                            I may change my tune at some point, but for now, that's how I feel. I am doing okay for now, I gained a few pounds back, but the bigger issue is how sustainable this all is. And of course the quality of life thing (I'm stuck in the house now for about 23 hours per day), unable to work, can't even walk around long enough to do my own grocery shopping. The muscle wasting is severe, I look like an advanced AIDS patient or (in my mother's words) a Holocaust survivor. It is frightening. Supposedly cachexia is irreversible without outside intervention (i.e. me just trying to eat as much as possible isn't going to make it better).

                                            Next step moving forward will be testing of the small intestine. For all we know, my intestines don't even function well enough to allow for a feeding tube, in which case this is as good as it gets.

                                              1. re: nothingswrong

                                                I absolutely agree that what the patient wants is what flies. It is completely your decision. But I do swallowing therapy so I have a fair number of clients on feeding tubes, and I've never had someone tell me they regret getting one, and there are several people who have chosen not to and I know their quality of life would be improved if they did. I think it's worth thinking hard about before you make a decision. There's this cultural idea that a PEG tube means the end of everything, but that's not necessarily the case. I say this as someone who loves food and cooking-I would hate getting a tube, but if it meant a little more time with my family and/or not spending hours of every day nauseated or trying to force down enough food to survive, I would do it so fast your head would spin.

                                                I'm sorry if this has already occurred to you, but I would also talk to your provider about what, specifically, a tube would entail. It sounds like food is really not agreeing with you so you may want to completely discontinue oral intake if you go the tube route, but depending on what the issue is you may be able to take a little food as desired. Some of the best long-term outcomes I see are from people who get a tube placed to deal with their nutritional needs, and can then just have a bite or two of foods that they really want without worrying about keeping their calories up. I don't want to play internet therapist but I see people all of the time who think of a PEG as a social/happiness death sentence, and that's not always the case. It would be worth at least asking-maybe you could have a little bit of those foods that do agree with you (assuming there are some) even if you do get the tube placed.

                                                I'm so sorry you're going through this. I know it is a huge decision, assuming you do learn that your intestines put you in a place where you can make it.

                                                1. re: ErnieD

                                                  Your input is valued and welcome! Thanks for sharing; it sounds like you have a lot of experience in this area.

                                                  I have asked many (too many) questions about the tube. I have the choice between NJ tube, PEG tube, PEJ tube, or a surgically placed J tube. It's up to me.

                                                  Unfortunately my doctors are not apt to answer all my questions, or maybe they just don't want to since I'm already so uninterested in it.

                                                  I absolutely do not want a NJ tube. It would be temporary (up to 6 months) to see how my intestines work, or if I even tolerate tube feeds, but my gastroenterologist totally gets that a 29 year old woman doesn't want a tube hanging from my face so he said to go ahead and get one of the others.

                                                  The PEG would be a modified PEG, with a separate extension tube running down out of the stomach into the jejunum. It is somewhat contraindicated in a person with gastroparesis because often the tube will migrate back up into the stomach and cause tremendous vomiting or aspiration during feeding. Gastroparesis does not allow for feedings in the stomach; volume is far too large and of course the vomiting can occur with even the smallest amount of food. I do have reverse peristalsis and am concerned about tube migration.

                                                  The PEJ tube is not an option through my HMO so I would have to go through months of paperwork and fighting to have it done at UCLA or Cedars. But I'd rather have the PEJ, as it's still done laproscopically but with the J extension secured inside the jejunum.

                                                  The permanent J tube is what I was originally supposed to get. My GI and primary doc actually scheduled the surgery before they even talked to me about it. I insisted on meeting with the surgeon first to ask my questions, and he was of no help. The J tubes they use at my HMO have balloons to hold them in place and the surgeon said I wouldn't be able to eat or drink ANYTHING for the indefinite future because of risk of bowel obstruction from the balloon. He said "around 6 weeks" post-op, he'd let some water out of the balloon and "see if" I was able to eat or drink.

                                                  From my research (and those I know with J tubes), these balloon tubes are not preferable and do often cause issues with eating/drinking, and multiple bowel obstructions. Again, my HMO for whatever reason prefers these balloons versus what seems to be more commonly used and so I'm left with an option which doesn't seem suited to my needs.

                                                  My family and most of my friends have the same opinion as you--that if a tube would improve their quality of life and allow for nutrition, they'd do it in a heartbeat.

                                                  I guess I'm stuck on the idea that it's come to this, and I refuse to accept that I can't eat more than one or two bites of food. For the last couple weeks, I've been forcing myself to eat through nausea and pain, spending many many nights up til dawn and just sucking it up and powering through. It seems to have helped me to eat more, though the nausea is obviously worse. I also am more or less unable to move after eating or I'll puke, so I'm just kind of taking it easy and hanging around the house.

                                                  For all I know, forcing food in is just making things worse in the long run, but who knows.

                                                  I don't doubt I'll have to get a tube placed at some point, but for now the IV therapy coupled with multiple medications is tolerable for me. I'm just not sure about reversing the muscle wasting this way, and am going to have to ask my doctor about it.

                                                  Thanks for your input and it's good to hear about patients with similar issues who thrive with a tube. I know people who've done well with it too, but I just don't like it FOR ME. I'm truly skeeved out by feeding tubes. The IV I can do, no problem, but having access to my insides really grosses me out.

                                            1. I knew a man who was in your position due to a stroke---I believe the problem was that he could no longer swallow. He had an indwelling nasogastric tube in place and used liquid food preparations. He enjoyed cooking and liked handling food, looking at it, and smelling it. It seems to me absolutely appropriate that you are mourning and sorrowful because you are suffering a HUGE loss. I would say to take comfort however you can, dreaming or daydreaming of food or painting it or compiling cookbooks or whatever you can devise that helps. Ask you docs if there is any such thing as a support group where you can commiserate with others having similar problems. Sometimes we dream of what we wish we had, and what is wrong with that?

                                              I am adding this bit by editing now that I have read the whole thread. Nothingswrong, I am feeling troubled by your choice of username. It sounds to me as if something is very wrong, and that your stomach and intestine know it.

                                              5 Replies
                                              1. re: Querencia

                                                That is interesting about a support group. I'm just picturing a bunch of hungry people sitting around talking about food! Lol. I have a few friends with similar digestive issues and we do commiserate a bit, send pictures to each other of meals we were able to partake in, or just things we cooked/baked for others but weren't able to try.

                                                I've met several people who went through bouts of esophageal cancer and were unable to swallow for a year or more, and were instead fed with various feeding tubes like the man you mentioned.

                                                Interestingly, they've all told me it was the worst experience of their life. Not the cancer, but the not eating! And the feeding tube. They say it was absolutely horrible.

                                                Thank you for your advice, I do read cookbooks and compile recipes and look at and think of food often. It's gotten maybe a little obsessive, but my boyfriend (the only one witness to it) thinks it makes perfect sense and he gladly eats the fruits of my labor.

                                                Yes, you are right that "Nothingswrong" is not the case! Too late to change it to "Alotiswrong." :)

                                                1. re: nothingswrong

                                                  I am sorry to hear about your troubles. For people who love to cook and eat, being denied the ability to taste their food is horrible.

                                                  My mother had cancer of jaw and tongue - there is a support group called Support for People with Oral Head and Neck Cancers (SPOHNC) - people with these cancers deal with similar problems to yours. They put out a cookbook and have different chapter meetings.

                                                  You might also check out the Chowhound Special Diets board - there are people who participate who have had feeding tubes.

                                                  1. re: 512window

                                                    I'm sorry to hear about your mother. I hope she is doing better? Kudos to her for getting through (I assume she is in remission, as you wrote "had").

                                                    My mother is actually a head and neck surgeon, and does mostly cancer surgeries. I grew up watching her in the OR and meeting her patients when she'd bring me to work. It is truly amazing what they can do! I still cringe when I hear of her removing peoples' jaw bones, tongues, palates, etc. I can't imagine going through that.

                                                    I have a friend who battled stage 4 esophageal cancer for 6 years and suffered the consequences of overgrown scar tissue, which in turn closed his throat up too tight to even swallow his own saliva (forget the name of this condition). He spent almost 3 years having to have this throat stretched every month, but has finally recovered to where he only needs yearly "maintenance" and can eat a cheeseburger and fries with the rest of 'em. He had a J-tube for some of that time and said it was the worst part of the whole thing. He's been in remission from the actual cancer for years now.

                                                    Of all my "normal" friends, he and one other who has AIDS are the only two who seem to relate to me on this level. Over time, I've become their only sounding board for the medical issues, as they say nobody else understands what they are going through. Even so, the comment I hear most often from healthy friends and family is: "Well at least you don't have cancer."

                                                    It's an interesting thing to say to someone.

                                                    I've never seen any tube feeders on the Special Diets board. I check it on occasion. Recently someone posted about their husband with the same condition as me, but it sounded like he had a much milder case. Gastroparesis can range from mildly annoying to life-threatening.

                                                    I will check out that site for some ideas and to read how people cope with their tubes, IVs, etc. I wish I could attend some meetings, as it would be nice to have in-person support, but I'm not sure I'd be welcome given I don't have cancer.

                                                    Thanks for the suggestions, and best to your mother and her health!

                                                    1. re: nothingswrong

                                                      You might try posting on the Special Diets board and see if anyone responds. Feeding tubes are pretty common. I think that the SPONC group would welcome you even if you don't meet the C criteria. But, they don't have groups everywhere.

                                                      My mom unfortunately didn't make it. Thanks for your concern.

                                                      1. re: 512window

                                                        Oh dear. I'm so sorry about your mother, and about my assumption. That was awful of me.

                                                        Please accept my apologies and condolences.

                                              2. I would be very unhappy, as I live to eat. However, you can make a positive choice here: focus on one of the other senses that you might not have previously contemplated, e.g. sight and sound. The world of arts, both visual and musical, might just fill the void.

                                                1. Having recently contemplated this due to temporarily losing complete sense of taste and smell and therefore only texturally being able to appreciate food, I would be pretty devastated. In the brief period where I got no enjoyment out of food I did feel like what was the point anymore. I have no answers but deepest sympathy. So much of my free te revolves around food. I would likely have to replace it with se other vice in order to function. Good luck with your decision.

                                                  3 Replies
                                                  1. re: melpy

                                                    I think I remember seeing you post about that somewhere else. Glad to hear it's resolved itself!

                                                    I imagine it would be quite similar. The most common thing that happens to me is I'll begin eating and then start heaving or gagging only 1 or 2 bites in. So I have to stop eating. It's like this perpetual tease. Or I'll have days where I wake up dry heaving and it continues throughout the day if I so much as move from bed. My stomach will growl and I'll feel so hungry but know nothing will go down.

                                                    Was yours caused by a virus?

                                                    I went to high school with a boy who had permanent loss of taste and smell (from birth). He was Middle-Eastern and always had the most extravagant lunches packed by his mother (full of different meats, grains, vegetables, sauces, dips, etc.). I'd grown up with him but didn't know about his condition 'til we were maybe 15. I remember asking him why he bothered to eat all of those delicious looking foods if he couldn't taste them and he said "Honestly, I have no idea." I also remember thinking how strange it must be to eat foods you might not even like, or to like bite into an onion and not even know it, or drink soured milk accidentally, etc. What a strange malady!

                                                    Although I guess he had never tasted or smelled anything so he didn't know what he was missing out on. I imagine it would be much easier to cope in that situation versus losing your sense of taste and smell like you did.

                                                    1. re: nothingswrong

                                                      I didn't post about it post about it previously and mine was caused by damage from a doctor prescribed medication.

                                                      1. re: melpy

                                                        That's awful. I'm glad you are doing better!

                                                  2. I've now read almost all the postings (I think) and my sympathy is even deeper. Maybe chowhound should find a way to let you change your name to Tantalus - because if anyone ever earned that name you certainly have. In fact your condition could be worse than even that of Tantalus. He knew that if he could only eat or drink his life would be bearable again. You know that eating or drinking may only make things worse.

                                                    I completely understand your decision to refuse further medical intervention for the time being. I guess my question would be how long you plan to keep that as your primary option. In other words how long will you go on your present path before you decide that its not working. Not to say that it won't work, but giving yourself a timeline now may help you figure out your next choice when that time or event happens.

                                                    You also say that you find a certain option or another option to be unacceptable. Certainly unacceptable for an indefinite period of time, but for a limited time? You know people who feel that it was the worst time in their life. But would they have not done it knowing that it helped move them forward to the next step?

                                                    Finally I want to say how much you impress me with your indomitable spirit and hope for the future. Ive seen many of your posts before and never realized what a state you were in. Kudos to you.

                                                    1 Reply
                                                    1. re: KaimukiMan

                                                      KaimukiMan, thank you for your kind words.

                                                      I am Greek and was obsessed with Greek mythology as a child but had never heard of Tantalus! I just read the story and how fitting it is!

                                                      Except I guess food and drink are within grasp for me. There is a saying that goes with gastroparesis in America: That with all the food and drink available to us here, we are still in danger of starving to death.

                                                      I have tried to come up with some set of plans for the future, when I will have to just give in and get the tube, etc. It happened several weeks ago. The agreement with my family and doctors was that if my weight ever got down to 80 lbs, I'd be hospitalized and get a tube inserted. But I chickened out once I was in there. I "allowed" them to start me back on TPN (total parenteral nutrition), since I'd only been doing IV hydration (saline/dextrose) for months prior. I hate the TPN; it leaves me stuck to an IV pole for 14 hours a day and makes me feel horrid. It also is not particularly helpful for weight gain, but it does include lots of protein and fats.

                                                      So for now I'm just treading water again, knowing I can't really fix my situation, but trying to enjoy a brief reprieve and some yummy (albeit bland) foods. It's just nice to eat again. It seems jacking up my non-FDA-approved medication and adding a new somewhat dangerous one is allowing me some 1500 calories a day. I'm still kind of stuck at home, but I'd rather be stuck at home and eating and feeling 50% than stuck at home and hungry and too sick to get out of bed. So I planted an herb garden, spent all week deep-cleaning the kitchen and bathroom, and am going to start a wood project out in the garage this weekend.

                                                      My whole family is out of the country at my brother's wedding, so I'm nervous to make any big changes until they return. They are ultimately my biggest support, and my mom is still my emergency contact. My doctors wanted me to come in for the tube surgery again but I said to just chill out until my mother's back. She's been gone 3 weeks so far, and will be back in a couple more.

                                                      My weight last week at the doctor got up to 85.5 lbs so I am doing something right (maybe). If it dips down again I will get the tube.

                                                      Thank you for your thoughtful response and support. I do appreciate it.

                                                    2. Thought of your posts today.

                                                      I am not a baker, but I made chocolate chip cookies this afternoon. It was in the 20s and sunny and the oven warmed the house.

                                                      A cookie cracked and I ate 1/2 as I was removing them from the sheet. You know how the choc chips do that oozy-stringy thing when you break a warm cookie in half? That is so beautiful.

                                                      My joy was kind of short lived (ahem).

                                                      My SO will have wonderful home made cookies tonight. I'll have steamed rice (my go-to when my stomach is in rebellious mode).

                                                      Rice and ginger ale seem to be the two sure-things I can digest.

                                                      Do you have anything that ~does~ work reliably? (Sorry if I missed that in previous posts).

                                                      2 Replies
                                                      1. re: pedalfaster

                                                        Mmm, gooey chocolate chip cookies. Definitely beautiful, definitely gives me the worst reflux ever, lol. I can eat choc chip cookies but only once they're completely cooled.

                                                        Steamed white rice is a good safe food for me most of the time too. Lately it causes some stomach upset for some reason and I'm not sure why.

                                                        Other safe foods are toasted white bread (I prefer French or Italian fresh-baked bread), salted roast potatoes, saltine crackers.

                                                        When I'm feeling decent, I can do pasta with olive oil, corn tortillas with FF string cheese, and cooked carrots.

                                                        I do eat a lot of homemade baked things. I tolerate them much better than savory foods for some reason.

                                                        No matter what, I don't think there's any food I can eat without experiencing an hour or two of stomach upset or discomfort. When it's bad, I will start gagging mid-bite and have to spit it out, and then my stomach will just involuntarily heave for a while.

                                                        On a normal day, I just feel super stuffed (like after Thanksgiving dinner, but I'll have only eaten an ounce or two of food) and unsettled. I can't move around much. Then I start burping A LOT after I eat, and each burp is an attempt for my stomach to empty itself, so I have to really concentrate to get the burps out without vomiting (sorry if TMI). That's my main symptom.

                                                        Oh and cereal! I eat plain dry cereal every morning and it's maybe my most enjoyable "meal" of the day. I do get daily morning nausea, but I also feel best with an empty stomach. As the day goes on and the food just piles in there I feel worse and worse. By the end of the day, I'm burping, heaving, gagging, and lots of stomach pain. Sometimes so much so I can't stand up or lay flat. So breakfast is the best.

                                                        Have you tried plain cereal? I've been on an Apple Jacks kick lately--something about the flavor is very unobtrusive, and the crunch is a nice counterpart to all the bland mushy foods. Other ones I've handled well were Corn Pops, Cinnamon Toast Crunch, Frosted Flakes, and Honeycomb. Sugary ones are easiest, no fiber, no fat.

                                                        1. re: nothingswrong

                                                          Interesting your "safe" foods sound much like my daily diet when I first returned home. I ate pretty much anything "white"; potatoes, rice...and those frozen pierogies stuffed with potato; have you tried them?

                                                          I had weird cravings for KFC mashed "potatoes" (whatever the heck is in them) shhhh, don't tell the food-police on Chow.

                                                          I refer to those days as my toddler-diet. I am happy to say I have branched out, but on bad-tummy days I revert to the couch and my "all white" food.

                                                          Funny about the cereal. Mine is Cheerios!
                                                          I think this was the first solid food I had in hospital post-TPN and it just kind of "stuck".
                                                          I once posted about smuggling food into movie theaters. I cannot do popcorn (OMG I would LOVE buttered movie theater popcorn!) so I smuggle in a little zip-loc of Cheerios so at least I can crunch along with the rest of the theater goers.

                                                          Take care.

                                                      2. Here's my $.02 which I'm often told is only worth $.01, I guess it's a recession thing.

                                                        Well it seems this topic has changed directions several times while reading though several of the responses you have received so far. I’m not sure I have anything of value to really contribute here, but hey that’s never stopped me before.

                                                        You’ve asked for our thoughts and I will try to share with you my thoughts based on your original post and what I have subsequently read in many of the responses. The first and foremost thing I want to say is based on this line of your OP “I feel life probably isn't worth living if I can never eat again.”, I know you go on to say you are not suicidal, but something still prompted you to write / post this knowing full well the replies this comment would generate. Life is always worth living, just ask anyone who isn’t living anymore and they will tell you!! My thought on this matter; life is tough and I’m sorry for what you are going through, but NEVER allow this type of thinking to enter your mind, NEVER.

                                                        You also said; “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.” My thoughts; I’ve lived most of my entire life day dreaming about Pamela Anderson, knowing full well I would probably never get to “enjoy” {{wink wink}} her company. But isn’t that the purpose of dreams? Even if you are dreaming or remembering things you have done, if you have enjoyed those things then cherish those memories, embrace them don’t look at them as negative or bad. As the saying goes it’s better to have loved and lost then to have never loved at all. Continue to love your meatballs, chicken and rich chocolate cakes, and I promise to continue dreaming about Pamela Anderson! {{wink wink}}

                                                        You have already been given so much good advice, as I previously said, I don’t have anything better than anyone else to offer you. I did see someone provided you with a link to a blog of someone with a condition similar to yours. Based on what I read of the blog I commend that person for their approach and would suggest you take a few clues from reading that. I’m a similar person to the bloger…..when I’m faced with a formidable opponent I embrace it. I learn all I can about it and I accept it….even if it’s accepting my own defeat I do so as quickly as possible. You might not be able to change your physical condition to enjoy the same things you use to, but you can control how you decide to accept it. You can sit here and say as you did before “I feel like life isn’t worth living” or you can embrace this new undiscovered chapter of your life and choose to conquer it mentally……….then use it however you can to your benefit. Perhaps like the person with the blog your future will be educating and supporting those that face the uncertainty that you currently do, perhaps it will be something completely different, nobody knows for sure but only your destiny will decide, and only you can decide your destiny. God Bless.

                                                        I also find your username to be rather ironic.

                                                        (Just out of personal curiosity does this also include the inability to stomach beverages/booze? That would be a tough one for me!!)

                                                        1 Reply
                                                        1. re: jrvedivici

                                                          Thanks for your .02.

                                                          I understand everything you're saying, and can appreciate the Pamela Anderson analogy.

                                                          No, I can absolutely not drink alcohol. It can get trapped in the stomach and cause alcohol poisoning or several-day-long drunkenness, requiring medical intervention, stomach pumping, etc.

                                                          I don't stomach other drinks well either. The only things I can drink are espresso, flat Coke or Sprite, or water, and all only in very small amounts (a couple sips at a time).

                                                          I know I need an attitude adjustment. When I posted this thread, I'd just gotten off the phone with my doctors and they were pestering me not to eat anymore and it just broke my heart! I was in a panic.

                                                          To me, it all seemed "too soon," even though my mother kept saying "It's not like this has all come out of nowhere."

                                                          As with any extreme lifestyle change, I think the transition would be smoother once I've had more time to process it. I am feeling more optimistic in general, but don't doubt that at some point I will have to get a feeding tube put in, and I will probably need it forever. So long as that day isn't today, I'm just going to keep on trying my best to enjoy what little I can eat, and every moment I'm not in the hospital or violently ill. Everything's really one day at a time.

                                                        2. This story about a woman with a chronic condition and, tricky diagnosis, was just on AOL's home page. Might strike a chord with you, or lead somewhere: http://www.everydayhealth.com/columns...

                                                          1 Reply
                                                          1. re: greygarious

                                                            Thank you! That all sounds very similar to me in every way. Even moreso than I could explain here.

                                                            I'm going to forward it to my specialist and see what he thinks.

                                                            Much appreciated!!!

                                                          2. I would find a way to taste but not swallow.

                                                            Who really loves swallowing?

                                                            Its tasting and chewing that I like. Only thing that I really like to swallow is ethanol.