General Question

wildpotato's avatar

How to eat with no appetite?

Asked by wildpotato (15224points) July 17th, 2020 from iPhone

I have IBS. With severe diet restrictions I manage to only be in pain only about 25% of the time. But over the last 15 years it’s gotten so that I really resent food. If Soylent or something like it were an option for me (it isn’t, and power shakes generally aren’t, because of the ingredients) I would happily never eat real food again. And when I’m in pain for days on end, like this past week, my appetite completely goes away and eating actually feels kind of disgusting. I’m already only like 100 lbs soaking wet, so if I don’t eat enough I get pretty hypoglycemic – really shaky and start feeling very anxious and eventually frantic.

I know many of my old Fluther pals also have digestive issues and/or are cancer survivors. What are or were your strategies for eating, when food is just awful?

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26 Answers

JLeslie's avatar

Sorry you are dealing with this misery.

All this pain doesn’t sound like it is just IBS. I’m assuming you have had it so long you have seen more than one doctor though.

Have you tried anti-anxiety medication? I wonder if that would help not only your anxiety, but your appetite also. The thing is those drugs can be addictive, so it’s not a long term solution, but it would be an interesting experiment. Only with a doctor, I don’t mean go borrow some pills from someone.

What type of pain is it? Where is the pain? When is the pain? Maybe you have some scar tissue or inflammation or crohns?

Have the doctors tried giving you antibiotics for it?

longgone's avatar

I think you’re on the right track with liquids. Can you find a homemade smoothie or shake recipe that’ll let you get in a good base amount of calories? Not sure about your specific restrictions, but maybe make a list of mashable things you can eat without pain? Then prepare ahead and freeze in portions. If you’re struggling with low appetite, it’s important to keep food ready to go so you can take advantage of any brief windows when you do feel hungry.

Which brings me to my second point: Don’t force yourself to eat. That in itself, even without pain, will train you to shy away from food. Get your basic nutrition in liquid form, treating it like medicine. Eat only what you really want, make it easy to grab things, and don’t keep track of your food intake. Maybe leave out little snacks to nibble on when you start to feel shaky?

canidmajor's avatar

I sent this to Mariah. Hopefully, she’ll have some wisdom for you.

wildpotato's avatar

@JLeslie IBS is a diagnosis of exclusion – there’s no positive test for it; just tests to exclude other things like celiac & lactose intolerance. So based on my constellation of symptoms, that is the diagnosis. But I may go in for more in-depth tests if my docs think that’s the right move. It has been mentioned that it could be Crohn’s.

I have tried anti-anxiety meds, but prefer cannabis. Fewer side effects plus some occasional appetite stim. I know the mind-gut connection is a powerful one, and my symptoms do worsen when I am stressed, but I’m 99% sure – as are my docs – that my gut issues are there “in their own right,” so to speak. The pain is greatest in the morning, and is present every morning. If I’m very active throughout the day it tends to not visit so often. This is a large part of the reason I am a farmer, and exercise like a demon, and prefer day jobs that keep me running around all day.

wildpotato's avatar

@longgone I love both your suggestions. I do way better when I prepare enough food for leftovers for several days, so the chore of eating isn’t coupled with the chore of cooking. I should try again with shakes, thanks for the encouragement. I had given up on shakes because I can mostly only eat meat and starches, and who wants a meat smoothie?? But I can eat a few veggies. Will try to come up with something…

As to your second suggestion – that had never occurred to me before, that forcing myself to eat would contribute to my aversion to food. Thank you, that makes so much sense!

Dutchess_lll's avatar

Eat 1 bite then put the food up, then half an hour later eat another bite. Eventually it will get gone! If I try to eat “too much” at once (IE more than 1 bite at a time) my body rebels.

kritiper's avatar

Dine on chocolate ice cream covered in chocolate syrup.

Dutchess_lll's avatar

She needs nutrition. The dairy is good but not enough.

JLeslie's avatar

Don’t take this the wrong way, but IBS in my opinion is a diagnosis of the doctor hasn’t figured out what’s wrong, which is basically the same as exclusion. Sometimes medical science doesn’t know yet, it’s not always the doctor’s fault.

Is your pain down low? Lower side? You say in the morning. So before you eat anything that day.

I went through a lot of digestive problems at one point, pain in my colon, pain in my stomach (the organ) and it turned out to be scar tissue attaching my ovary to my colon.

Do you have a thyroid problem? That can aggravate the digestive system also, although I completely agree with you it’s not just stress or slow digestion from thyroid. Something else is going on.

I had a dairy intolerance for years. One doctor wanted to call it IBS. After 8 years it cured. I’m pretty sure a huge amount of antibiotics I had to take for something unrelated Got rid of my dairy intolerance.

I know Mariah took antibiotics that helped. They are sometimes prescribed for Crohn’s, I don’t know the success rates with that.

I’m sure you have tried lots of diets, so I won’t even try to suggest various ones.

wildpotato's avatar

@Dutchess_III Good call! I’m trying this now by taking a bite then rewarding myself by knitting one row. Onto that second taco!

@kritiper Wanna hear something truly ironic? I’m a dairy farmer who can’t have dairy anymore! Ha! It’s not an intolerance – tested; I can do lactose – just hard to digest.

wildpotato's avatar

@JLeslie Agreed! The doc who diagnosed me was head of GI dept at the Mayo Clinic, and known to my family for years, so I’m sure he did as good a job as it’s possible to do – and he said basically the same thing you do, that there’s just a lot we don’t know yet and I’ll have to try many different things over time and see what works.

Yes, low pain. No thyroid problems. I avoid antibiotics like the plague (unless I absolutely need them, of course, but I’ve been very fortunate in avoiding infections for many years); they melt my insides. Probiotics seem to help, sometimes.

I do a low-FODMAP diet – it’s basically, very limited fruit & veg.

Dutchess_lll's avatar

Exactly. I managed to eat half a tuna fish sandwich over the course of 30 minutes tonight.
I tried to eat a whole half of one at once yesterday. Didn’t get half way through.

johnpowell's avatar

Oh lord.

This dude had stage 4 mouth/neck cancer. Three months of radiation and chemo. A good six months of no food orally.

Fucking hell. I can’t relive this. I’m out. Sorry.

Oh.. Might want to try cbd or weed oil or whatever the kids are calling it these days. Stellas mom had lung cancer (R.I.P) and Stella snuck her weed stuff to help with her appetite. It helped and it didn’t get her mom high. Her mom didn’t even know she was being dosed.

JLeslie's avatar

A close friend of the family has had Chron’s for 50 years. He eats the worst food (in terms of health) to keep from being in pain, and to stay out of surgery. Vegetables are dangerous for him. Harder to digest, and can cause a blockage. His cholesterol is always very low even though he eats fatty foods, because his absorption is so hampered, but he has had surgeries to remove parts of his intestines. He’ll eat a piece of cake without worry.

Another friend with the pan ulcerative colitis, she changed her diet, and I wish I remember what cured her. She believes she never had it, wrong diagnosis. It wasn’t an unhealthy switch like the Crohn’s example.

I can’t eat a lot of raw vegetables. I feel the food travel through my digestive track literally. Especially hard veggies like carrots and celery. I feel it the most on the descending side of my colon, the left lower side of our abdomens, but I feel it all over.

If your pain is lower it sounds like your colon.

Have you taken probiotics religiously for a long time? If so, if it were me, I’d stop taking them and see what happens. There are a lot of conflicting studies on probiotics. You can always start taking them again.

I know you had a lactose test, but did you ever try using Lactaid pills to see if it helps? You might try them if you cheat sometimes and eat dairy. Just to see. I’m not pushing dairy, I think it’s overall bad for us, but the Lactaid pills helped me a lot when I couldn’t eat dairy. I don’t believe I would have tested lactose intolerant. How do they do that test? Dairy put me in the bathroom within a half an hour for years. Now, I don’t have that problem at all.

Did they give you prednisone for a couple of weeks to try to reduce inflammation?

You can’t stay like this. I really believe you can get better. Maybe not totally cured, but better than you are.

I know antibiotics sound counterintuitive, but antibiotics have been a gift for me. I hate taking them too, they are a mixed bag. It took me years to figure out which ones help the problems I have. Usually, it was dumb luck. I would take an antibiotic for cellulitis (something you have to treat with antibiotics) or for a bacterial sinus infection, and I’d realize my other chronic problem was clearing up. Plenty of antibiotics did nothing to help though. It took years because it’s not like I need an antibiotic for something every day, or even every year.

Mariah's avatar

Hiya.

I really feel for you. When food directly causes pain, it is very hard to eat. It’s also hard that you have identified so many particular foods that make it worse, because having to stick to a small pool of “safe” foods is rough when you’re having appetite problems. My usual advice for appetite problems is “eat what sounds good; feel no guilt” but that doesn’t really work here.

IBS is real and can be very bad for some people. I’m curious how your doctors have ruled out IBD (Crohn’s and colitis). Have you had a colonoscopy during a period in which you were feeling unwell? Do you have other symptoms besides pain (diarrhea, bleeding, mucous)? The concern if it is IBD is that that pain could be a symptom of intestinal damage occurring, which may not be reversible.

I have very bad appetite problems now, but it is different from your situation. My Crohn’s is under control (kind of, I have a very bad fistula right now but that’s a very different issue) so I don’t get pain when I eat. My problem is that after what I’ve been through, surgeries etc., I just do not naturally have an appetite. None. No desire for food. I take an appetite stimulant called mirtazapine and that has changed my life. I am over 100 pounds for the first time in my life and I have energy. I’m not sure how much that would help in your situation but just wanted you to know that option is out there.

Back when I was actually in the thick of it, I never identified foods that made things worse, but that didn’t stop me from obsessing about the idea that what I was eating was harming me and that maybe there was something within my control that I could do to minimize that harm, whether that be following a particular diet or just minimizing what I ate. At one point this pressure became so much that I checked myself into the hospital and asked to be put on TPN (IV nutrition). I do not recommend this. It did not end well for me. In hindsight I wish I had just consumed calories and stopped thinking about it so much. Nigh impossible I know.

This may sound silly but one of the things that got me through my worst times was distracted eating. Just scrolling something entertaining on my phone or watching TV while I ate so that I’d be thinking about the food as little as possible.

I love Soylent. I’m really sorry that’s not an option for you.

I know you’re asking about coping mechanisms but I also am kind of in the camp of believing that your life should be better than this. This might be my bias as someone who has Crohn’s, which can go into remission. For me the periods where I was in pain and really suffering were realtively short-lived (on the scale of months) flare-ups and the goal was always to get out of that, not to learn how to live with it. So adjusting meds, etc. I do think a second opinion about your diagnosis could be a good idea. I hate the thought you could just be suffering with an untreated IBD flare.

I don’t do Fluther anymore, but would like to be available to you if you wanted to talk about any of this. If you use Facebook I can PM you my real name so you can add me there. Otherwise if you’d like I’ll give you my cell phone number so you can text me.

Peace.

chyna's avatar

^Good to see you!!! I’ve missed you!

Brian1946's avatar

It’s my understanding that dead dietitian Chuckles Heston, discovered that “Soylent Green is made from PEE PULL!” ;-0

Jeruba's avatar

@Mariah, I’ve missed you too. Fluther would be better if you were still around.

Mariah's avatar

Thanks :) I miss some things about my time here but in general feel lighter for having given up on the hopeless notion of actually changing minds. Feel free to PM me if you want to connect on Facebook (or Twitter) and haven’t already.

tinyfaery's avatar

I struggled with my ibs a lot in my 30’s. A low dose of an SNRI changed my life forever. Maybe look into it.

I had two strategies I used when I was feeling like you are now. Eat very small amounts of food multiple times a day, and I mean small. Like 3–5 bites. Oatmeal was always easy for me to get down and not feel like I was dying 10 minutes later. Also things like basic sandwiches, soups, and crackers work well. The second thing is ice cream, non dairy. There used to be very few choices for this, but now there are so many. I would eat the ice cream when even bites of food were too much.

Feel better. Weed helps, so keep doing that. But really, talk to someone about a low dose Serotonin reuptake inhibitor. I never thought I would get my life back but the medication changed everything.

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Jeruba's avatar

I had a problem with IBS (so diagnosed by my doctor) for three years before I figured out that it was a side effect of a medication (prescribed by my doctor). For a while there, I thought it was going to end my career.

When I couldn’t eat, I resorted to the morning-sickness solutions that I’d used years earlier: a few Saltine crackers and clear soda such as 7-Up. If I took my time, I could usually force down three or four crackers, enough to keep me going.

Eventually I came to suspect the meds, and I told the doctor. That’s when he said, “Oh, yeah, (name of med) can do that,” and he prescribed something else.

I think there was some long-term damage, but nothing like the nightmare of those days.

I’m sorry for your trouble, @wildpotato, and I hope some suggestion you see here will help.

Pandora's avatar

My husband has had Colitus for over 30 years. And he had been been great for the last 10 to 15 years. One doctor had him on steroids for 2 years. He got so bad at that time. Then one day I told him to try Immodium to stop the runs so his intestines have time to rest. And that helped him but wasn’t a good long term solution. I was always on him to avoid foods that could make things worse like too much salad, or any dairy except eggs, or high spice or hot spicy food. Then I began to noticed that everytime his sinus started bothering him his colitus would get better and I realized it was always when he too benedryl. Since there is no real known cause for Colitus I wondered if maybe it’s food allergies that trigger it. So we tried him taking benedryl daily and it went away. Then I got him to stop the stupid steroids that were causing tons of other health issues. And eventually he even stop the medication for his colitus which he was taking 8 pills a day. So it’s been that way for years, and eventually he got off of the benedryl. So now he’s pretty much back to eating stuff that he likes within reason and watches his stress level. I think stress is also a trigger. The more you stress over an ailment the worse it gets. He use to have bad skin rashes from the medications and they took years to clear up but finally they are gone. And when he starts to have a bout he takes immodium right away and benedryl. Within 2 days he’s fine again. He has gone years without a bout and the only time they seem to get triggered is when he goes out and eats something that is questionable. He gets his colonoscopy every 2 years and last year he had an exam after a minor flare up so he had another one this year and it looked fine.
So maybe start writing down everything you ingested the day one of your flare ups started. You may find something you have been overlooking. Also take note of your good days. What did you eat and how it made you feel an hours or so later. From pills to food to drinks. Also take into account what you did. Exercises, watched a stressful show, or had a stressful day.

Feeling powerless over your situation will only make it worse and starving also stresses the body. You need fuel for your body to work proper. You wouldn’t expect your car to run on fumes so don’t expect your body to do the same. Vitamins are no substitute for actual food. Food isn’t your enemy. You just need to find the right food. The wrong food is like cheap gas in your car. Also if you can take a cold bath when you feel bad, that may help reduce inflammation of your intestines and make it feel better during your flare ups.

Oh, one more thing I just remembered. My sister in law had IBS and she said she got rid of it by going to an accuputurest. She claims that worked for her but he also gave her some herbs to take so I’m not sure what worked for her. I don’t think she had it as bad as you though. Maybe you look at food as aid for your health. Your body can’t repair if it doesn’t have what it needs.
.

kritiper's avatar

Milk issues, eh?? How about Chocolate Coco Puffs with chocolate syrup?

kruger_d's avatar

Cooking can stimulate appetite and is its own kind of self-care.
During chemo the one thing that appealed to me was strawberries.
Steroids can really mess with appetite.
Ginger or peppermint tea, candy, or lozenges are good for calming nausea or stomach cramps.
Ask for referral with nutritionist.

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