I've been having difficult swallowing for six years.

Digestive health
1

Hi all,

I had a difficult time writing this out, and there may be typos, but please hear me out. I’ve been suffering and struggling with an undiagnosed condition that’s ruined my life. No one wants to understand, no wants to believe in me, and I don’t know what to do anymore because I can’t keep living like this.

For six years now, I’ve had issues eating, specifically swallowing. I feel like it gets stuck in my throat and when I reach down in here, I can pull bits back up out of my throat, or simply cough it up. I gag when swallowing, I drool a lot, there's persistent pain, and most of it sits in my throat for days until I'm able to get it back up (doesn't seem to block my airways, usually, so it's able to sit in there). I've had to avoid almost every food because of this, I can't eat out with family, and I'm seriously living off instant mashed potatoes, canned cheese, and thin pudding with nothing in it. Just a week ago, I’ve even started having issues swallowing these as well.

Although not eating a lot of foods have really made me sick, I can’t treat any of my other diagnosed medical conditions because I can’t swallow pills or even chew vitamins. I’ve asked for any liquid alternative available but my doctors say that there’s nothing wrong with me and end up sending me home with prescriptions for pills that I can’t take. None of my pills can be crushed or opened either. 

I’ve been to twenty-five different doctors and seven different hospitals, all of which have brushed me off like I don’t matter, refusing to find out why I have such trouble swallowing food. I’ve had a barium swallow, barium meal, endoscopy, blood tests, PH monitoring, x-rays, and a few other tests that I forget the name of (sorry). Nothing has been found, except acid reflux, however, I was put on medicine for that and haven’t had reflux in two years (they said my case wasn’t that serious anyways).

I’ve been seeing an ENT for six months and have continuously fought with him about my swallowing issue, which he says is acid reflux, although I haven’t had it in two years while the swallowing symptoms have persisted. I’ve done everything he’s said, I’ve let the man shove tubes down my nose, and he keeps thinking I’m lying. It’s not serious to him because I haven’t lost weight, however, I tried explaining that I’ve eaten enough amounts of the food I can to keep me at my normal weight. 

A lot of doctors, as soon as they find out I’m mentally ill, immediately tell me it’s ‘in my head.’ “You need to see a psychiatrist.” “It’s your mental illnesses making you this way.” I’m so tired of hearing it and it’s the very reason I absolutely hate my doctors finding out. I’m seeing a therapist, I’ve asked her about this, and she can’t understand why they’re blaming it on my mental illnesses. It’s not like I have questioned the swallowing issues stemming from my head, however, no doctor will refer me to someone that actually deals with neurological conditions to see if it’s a possibility.

I'm 17 and don't want to live my entire life struggling to deal with this by myself. I don't want to drink blended up milkshakes made out of different foods, that still cause me to choke mind you,  and I don't want to live off limited food for the rest of my life. My depression has gotten to the point where it's made me stop really living, going out with family members, or doing anything because I feel alone. As I type this, I'm crying my eyes out because I'm scared, suffering, and no one believes me. What's wrong with me?  

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Hi hannah24606. I suspect you are in the US and may have to pay for your treatment up front, so that may explain the lack of enthusiasm from the doctors. We don't have the word 'gotten' in English! Try keeping off milk and all milk products if you can.It causes a big increase in the production of mucus, which makes it thicker and causes the food bolus to stick in the oesophagus, which is very painful, and although not dangerous, can make life difficult. If you can get some thistle roots and clean them, chop into small pieces, crush and boil and sip when cool. It stops the production of excess mucus in its tracks. I had the problem for several years and it worked well for me and only recurs very rarely and to a hardly noticeable extent. Good luck and I hope it helps.

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Hannah, please ask your doctor to have you tested for Achalasia, and do this as soon as you can.  One of the group members in this Forum, Alan, will likely respond to you in depth.  Please read what he writes carefully and follow his advice.  I was diagnosed this past June, and will be having surgery on Nov. 3rd.  Achalasia is a rare disorder, very rare. Others have stories similar to yours; please know that you are not alone, nor is this 'in your head.'

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I'm sorry the doctors don't believe you. Whenever i talked with my doctors i sort of felt the same way. It's hard to explain that you can't swallow. Most people don't understand. I also haven't lost any weight from my disorder. That is because like you, i am persistent. It is very hard for me to swallow both food and water, but i make it work somehow. And often i throw up, or regurgitate food. But then i keep trying until some goes down.

For me the barium swallow test revealed my achalaisa very clearly. Maybe you could get another one done?

I recently thought about making a video with my phone of me trying to swallow, just so i could show it to the doctors who seem skeptical. I struggle every day, every time i eat or drink. Maybe you could do something like that.

I hope you find your answers. I hope you find a good compassionate doctor. Don't give up. Those of us in this group understand part of what you are going through.

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Dear Hannah

​Sorry that you are sufefring in this way.   What you are describing sounds like achalasia, but it might be a variation of a motility problem.   It is not unusual for people of your age to have difficulty being diagnosed, unfortunately, because the doctors sometimes think it must be bulimia or some kind of eating disorder that is connected with mental issues.  To be fair, achalasia is fairly rare, amnd it does involve the nerve endings driving the muscles that take the food down the oesophagus into your stomach - so tension and anxiety does make it worse.   It is fair to say that this condition does affect your quality of life and it would not be surprising if it contributed to depression, especially when you have the frustration of not getting any help from the medical establishment.   Usually the problems tend to start getting better once you have been referred for specialist tests, but this does not appear to be so for you.

​I can suggest two things.   One is to download A Patient's Guide to Achalasia from the website of the Oesophageal Patients Association under the oesophagus and Achalasia (Towardsbottom of page).   Second, ask for a high resolution manometry test and ask for a second opinion about whether the test results could indicate achalasia or some other motility disorder.

​There will, however, always be a stress and anxiety element that would make this condition worse, regardless of the treatments that are applied, so finding some way of relaxing around food, perhaps some form of Mindfulness technique or equivalent, would be helpful.

I do wish you every success in getting this sorted out