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Barely Being Able To Eat


surfgirl14
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Hey Guys. So last summer I couldnt eat or drink anything due to this gagging sensation i had so they admitted me. So now my nausea is so bad that i am barley able to eat/drink at all and i have had this sensation about 3 times this month where when I swallow my swallow reflex will just stop and food will get stuck and i cnt breathe.. scary right :unsure: ... yea so anyways i am going to a new stomach doc tomm and have to tell him everything that has been going on. So I haven't been able to eat or drink barley anything the past 2 days. I know i cam dehydrated and feel horrible. Do you think he will admite me? I mean what would a doc admit you for? I really hope not... I have lots of stuff going on with school and I don't wana put my life on hold :( But I know that if that is something they do decide it will be best for me but its just the fact tht i dnt want to be hospitilzed (I know no one does) ....

Anways thanks for taking time to read this. Any comments would be much appreciated.

Thanks

Kayla

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I'm not sure if he will or won't admit you but I'm sure he'll do what's in the best interest of your health. I'm not sure what causes the interruption in your swallow reflex. If I had to venture a guess it would be related to a connective tissue dysfunction similar to what is seen in CREST syndrome (The E in Crest is esophageal dysmotility) There might be some type of connective tissue overlap going on since POTS can have connective tissue issues as well.

As for the nausea and other digestive issues all I can say is that for me it passed over a period of a few years. I have no doubt that your doctors will know what to do, unfortunately there's not really anything I can advise as I didn't really find anything that helped me during my bout of nausea. (Then again I didn't know I had POTS back then).

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yea true i guess no one would really know unless they are a doc but just thought i would ask if anyone had any idea if they would. I am not really sure if me barley being able to eat or drink is concerning enough to them to make them want to admit me. I am more concerned about dehydration then anything else.

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I get that too!!!! It has never been so bad I couldn't eat for days though- it only happens once in a while. I think trouble swallowing was on the list of symptoms for GERD, so could it be that? I feel so bad for you- I get several days in a row every month or so with such extreme nausea I cant drink or sleep or eat so I know how you feel. My mom has taken me to the ER twice during these times and they really don't do anything but load me up with zofran. I really hope your doctor appointment goes well and you feel better!

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I am glad to hear you are seeing a GI doctor as he/she may be able to order some tests that can figure out why you are having the problems with swallowing that you are along with the nausea and not being able to eat. Hopefully the doctor will order blood tests such as a BMP-checking your body's electrolytes for you to determine if you are dehydrated along with a CBC (Complete Blood Count)-you may be anemic which is another sign of dehydration. The doctor can also tell by your vital signs-blood pressure, pulse, respirations and temperature along with checking your skin turgor and eyes. He/she may order more invasive tests like an Upper GI X-ray with or without contrast or an Upper Endoscopy-a scope of your throat area down to your stomach to try to pin point a cause for this. Good luck and keep us posted.

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Potsgirl93,

Hi. Sorry this issue is kicking up again but being in the hospital is not the worst thing if that's what it takes to get you back to a nourished state. Have you been checked for a Chiari Malformation? It is one of the things that can cause issues with swallowing. Just a thought...

Feel better,

Katie

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puppylove - yea it is no fun at all! I am just hoping it will go away. Good point about GERD they said I had that actually and I take zofran in pill form but i think i got immunity to it and it doesn't really work that well for me anymore. Like I almost threw up last night (sorry to be so tmi lol) and i have never gotten to that point. I know it is not a stomach flu thing cuz i cn tell my pots symptoms apart from regular sickness. And thanks :) Hope things are doing good for u. I am going to message u later , I have a question :) Bye girl.

mwise- thanks for the comment that was very infomative. I have had a endoscopy b4 in the hospital when they admitted me last summer. Do you think with those test that they will admit me to do them? ha idk why i get so anxious about stuff i just need to breathe ^_^ It is just the hospitals down here don't except 18 as pediatrics and all my specialist are (besides my GI Doc) even my primary is a pediatrician. And when they admit me the admite me to the adult side in whcih they are super rude and not gentle or careful at all. But I will keep yall posted. My appt is today at @3

katybug- That is true i know it isn't the most horrible thing but like i said to mwise about the hospital they send me to it is pretty scary for someone who is 18 and is used to peds :( The doctor i get treated by works at duke childrens and i would so rather go there. It is a great hospital and they are aware of pots. Last time i got admitted to the one where i live they sent a psychologist in to accuse me of bulimia/anorexia/anxiety you name it ugh! I have not been checked for that and I am not sure what it is but I will def look into it b4 i go and if i think that is something tht relates to me i will def bring it up to him at my appt. Thanks i love hearing about new sutff and seeing if it matched my profile of symptoms.

Thanks everyone Again

Hugs Kayla :wub:

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The swallow problem could also be related to the overactivation of the SNS. There is such a thing as "anxious swallow". Where not even intentionally, your brain thinks your gonna choke so you stop swallowing mid way and actually end up choking yourself. It is a nervous condition that is common in disorders that cause excess sympathetic activity such as pots. I often get this if I have to go out to dinner with new people and im nervous. I have choked several times just like you re describing. An antianxyolitic will stop it if that is the cause.

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... Last time i got admitted to the one where i live they sent a psychologist in to accuse me of bulimia/anorexia/anxiety you name it ugh! ...

It's things like that that make me really really mad. Anorexia and Bulimia have very typical presentations, but when the person wants to eat and is involuntarily throwing up that is most definitely not on the axis of eating disorders. And it's just the accusation which tells you they're not taking you seriously. It's so frustrating, there really needs to be more research and training for dysautonomia conditions in this country because right now we're just sort of by ourselves.

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... Last time i got admitted to the one where i live they sent a psychologist in to accuse me of bulimia/anorexia/anxiety you name it ugh! ...

It's so frustrating, there really needs to be more research and training for dysautonomia conditions in this country because right now we're just sort of by ourselves.

Yeah, maybe we should buy an island and all move there and we could support each other, because we'd all KNOW what others were going through and we would all take each other very seriously. Of course, it might be a very whinney, dismal place to be. But, we'd be understood. :)

Issie

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I have had GI issues since I was 4 y.o. and all through high school I would get pulled into the guidance counselor's office and drilled about whether or not I was anorexic/bulemic. I finally got smart mouthed one day and told them that I love food and I hate throwing up and they needed to leave me alone. It really did suck to be accused of something I wasn't doing when what I really needed was support for the illness I was really dealing with. I'm so sorry you have had to go through it, too. Know this...each step of this journey is going to make you stronger. :wub:

Big Hug to you,

Katie

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thanks everyone. LOL izzie sounds good to me !

I went to the new stomach doc yesterday am sad to say he was so rude to me. He was totally uncaring and not understanding. He told me I was dehydrated when I got there but yet he sent me for blood work (in which i almsot passed out) oh and not to mention he told me to call my cardiologist because he doesn't handle POTS. I was like serous;y? My symptoms tht is causing me to not be able to eat drink is swallowing issues and extremem nausea and u are a stoamch doc but u dnt hand those symptoms? I was so furious. The only good thing he did was order some test to test for gastropeorisis. And he didn't even do an exam , i was so shcoked. I would have to say the worst doctor I have every seen! Very dissapointed. I left the office feeling quite frustrated and am still sick.

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So sorry to hear that! I know exactly how you feel. I had to go to a couple of GI docs before I found one who knew about POTS. Are there others in your area?

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Hey yea I am still upset , he made me cry :( This is exactly why I wont to say in pediatrics because they are more caring and understanding. That was my first adult doctor that i had been through. Well my mom called and told them waht had happened and so forth. So the nurse was mad they treated me like tht so she is goin to call the doctor. Also the nurse said if they cnt refer me to someone close in my area then they want to send me to this really good doc and she knows lots about pots and the stomach aspect of it.

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Potsgirl have you been able to eat? Well, it's good that the nurse is sticking up for you. Again I wish I could say something from experience that might help you, but I really don't have anything. Except I will say that eating apples was for some reason easy for me to hold down - moreso than other foods.

As for the esophageal dysmotility, make sure your parents or family knows the heimlich maneuver just in case. Sorry you have to suffer through this, it's certainly not a common ordeal for people so I can see how that's isolating. But know that there will come a time when you'll look back at this, this won't be something you'll have to suffer from for the rest of your life.

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I am sorry you're going thru this. When I got down to 86 lbs my immunologist told me my insurance co. called it failure to thrive. I do my own ADLs, housekeeping, attend mass and volunteer at my church, go out to eat and light shopping, drive to appointments not too far away, eat my meals and a Rx strength nutritional sustanance. I have GERD/gastritis and bathroom days from my IBS (definitely not of my own choosing). My appetite is good and hubby told doctor that I eat what he eats (and more through the day--only difference is he snacks at night). My pancreas is fatty so immunologist thinks it is causing malabsorption. The POTS this summer really got me down. But when I saw the immunologist for the first time in Dec., (also pulmonology/allergy), she ran a pulmonary function study with loop and it showed vocal cord dysfunction. My PCP (IM) thinks it's probably related to my Ehlers-Danlos (connective tissue). But with this VCD, I choke sometimes. My vocal cords (ligaments) shut and shut tight when they should be open. My immunologist sent me to an otolaryngologist who scoped me and explained things to me. GERD is definitely a trigger. Laughing, singing, talking loudly, smoke, scents, fatigue and many other factors can trigger these vocal cords to go into spasms that I can't really feel as spasms, only as sense of choking/grittiness/tightness about the upper airway/throat (it is also referred to as 'upper airway obstruction'). My prilosec and ranitadine don't control my GERD and Reglan can only be used short term. I asked my pulmonologist's nurse if I get into breathing crisis from the VCD/upper airway obstruction would he manage me and she said, 'no, he doesn't treat that'. I was as dumbstruck as you, knowing that sometimes this leads one to have to get an emergency tracheostomy and be on ventilator. I live here in the boonies so I'm stuck with the pulmonologist who'd misinterpretted my pulmonary function tests in 2007 (I took those results to my immunologist). His treatment for my asthma only made things worse and when I would try to tell him I couldn't swallow--his inhalers were too drying, making things worse, he would only add more (I discharged him) but he's the only one here. I do keep glass of water by bedside (ice that I let melt or get up to eat a frozen ice stick to soothe my throat). Sugar and milk makes secretions thicker if you have trouble with thin secretions and if you have trouble with thicker secretions, then avoid those (and caffiene/including chocolate). Something warm and semi solid like oatmeal or soft green beans, asparagus are more soothing on my throat. When I'm having trouble swallowing, I have to make sure to take smaller bites and really, really chew it up good. Best wishes.

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jangle,

It's so weird that you can eat apples too. It's one of the only foods I can eat when my GI issues flare...in fact, I crave them. It is so odd because apples are so hard to digest. I wonder if there is a substance in apples (like maybe the pectin or something) that has some positive effect on or autonomic system???

K

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potsgir93,

One more thought...papaya puree is used as natural treatment to settle many irritable bowel issues. Plus, it will give you some decent nutrition. You can make it yourself if you have a good blender or food processor. Just add water (you can add a little honey if you need to sweeten.) Here is also a link for an online source: (this is a product marketed for horses but as you see on the page I linked you to, it is human grade and kosher.)

http://www.stomachsoother.com/help.aspx

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jangle,

It's so weird that you can eat apples too. It's one of the only foods I can eat when my GI issues flare...in fact, I crave them. It is so odd because apples are so hard to digest. I wonder if there is a substance in apples (like maybe the pectin or something) that has some positive effect on or autonomic system???

K

I don't know, but at the time I was ecstatic, there was a time where I went nearly a week without eating anything and my body started burning up so I figured I was either going to quit school or keep food down and thankfully the apples saved the day!

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potsgirl93,

I am sorry to hear about your troubles. Everyone has given such good advice. I have a few things to add. Until you find a decent doc to help you, you may want to try thickened foods, such as mashed potatoes, applesauce, pudding, etc. In the hospital, speech therapists assess for potential swallowing issues and recommend thickened foods, which are easier to swallow than solids or liquids. You can even add a thickening agent to liquids to make them thickened. Once you find a doc, you may ask about a swallowing study, done in Radiology with a speech therapist. They give you various forms of barium (liquid, paste on a cracker, etc) and watch on x ray. Pretty cool how they can watch you swallow and see if there are any damaged areas that don't move as well.

Have you tried peppermint or ginger for the nausea? My favorite remedy for nausea is Comfort tea made by Aveda that has licorice and peppermint.

Thanks Julie for the post, I also choke on food and it doesn't happen until I am in the middle of swallowing a liquid. I have learned to take a deep breath and relax, which releases it and I can then swallow and breath.

Best wishes, Lyn

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My goodness... What an ordeal. I was just going to echo the advice you've already received and tell you to try thickened foods.... I've had "anorexia" as it states on my diagnosis list (that was fun to explain to my husband... Who is already a nervous wreck about my condition and 40 lb weight loss- "No,no,no Honey... It doesn't mean I'm anorexic as if I have anorexia nervous, it's a medical term for loss of appetite!!!!" Sigh)

Since this "flare- or whatever you call it" began for me last April my appetite began to shrink. By the time it was Nov. and I was hospitalized (not for not eating- head trauma initially from syncope) I had zero appetiite. I still don't. I could go a week and not eat a thing and never be hungry. It's like my appetite sensor is broken (Mayo neuro actually told me that is due to my autonomic failure) I have to remind myself to eat. I have problems with swallowing and dry mouth- so I exist on pudding, mashed potatoes, applesauce (all mentioned above) but mainly meal replacements like Ensure or Boost. I am thankfully able to drink a lot so I get LOTS of fluids but would never eat unless I followed the alarm on my iPhone telling me it was time for some calories. Not sure if my appetite will ever come back. It's a hard situation because people see me and are shocked at how gaunt and thin I look and (especially my family) everyone just telling me to EAT whether I want to or not. Easier said than done to eat when one isn't hungry and I know I will throw it all up if I do. It is really hard to eat when you're not hungry!!!! 2 bites and I'm done or get sick.

But just make sure you are getting something down. I'm sure you've had nutritionists offer solutions as well. And keep hydrated!!! That is so very important.

((((((HUGS)))))) Jen

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Sorry, Kayla, I didn't see this post until today. Did you ever get the results for the gastroparesis? Sometimes the vagus nerve can cause trouble with swallowing or it could be GERD. Are you able to drink fluids? Make some protein drinks or drink some Boost for some nutrients. Chocolate is the best flavor...it has to be cold to be palatable. People used to think I was anorexic, too. I love to eat, when I can. It will be OK. We know your not!! I hope you are feeling better... :)

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