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Sjogrens Disease and severe mouth dryness

Posted , 8 users are following.

kristyk
kristyk

I have sSjogrens ad have for many years now. The other night I was eating and I alway drink before I take a bite of food. I started to eat and began choking on my food which got into my esophagus. It was stuck.i tried to get it to go down and tried to get it out. No luck. I was scared to death and in a panic. I called 911. Heard the sirens and said tis that for me? Yes the paramedics were there they took me to th ER at the hospital. They tried o give me two shots and a nito under my tongue. This was to relax the esophagus. That didn't work so ER doc called in an anatesologist to put me out and a gastrointestinal doctor to do an endoscopy. It was now 5 1/2 hours I was sure I was going to die. I was so so scared. It was sourdough bread. It was so good. But I will never eat it again . I have tried evovox and salavart but had side effects so had to stop takin. I dont kow what to do unless I eat only soft foods. Does anyone have this problem or suggestion for what I can do. I dont want to become paranoid of food because it was so bad. I welcome any help

Thank you kristyk

1 like, 49 replies

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  • lily65668
    lily65668 kristyk

    Posted

    Never had it anything like as bad as this, but I always have to be very careful when eating any kind of bread. Sometimes potatoes too. Surprising, because I don't have excessive problems with dry mouth. I don't actually choke, the food goes into my oesophagus normally, but then it won't go down and stays there in a painful lump around the middle of my chest for up to two hours. Fortunately, it's always resolved itself in the end without medical intervention, but that might just be luck!

    When it happens to me I just keep calm and take very small sips of water. Not large quantities, as it could back up and choke me. And I stop eating of course. I've always tended to eat too quickly, and have to remind myself to go very slowly when eating bread, taking small mouthfuls and chewing it well before swallowing. But I sometimes forget. Hopefully your experience will serve as a cautionary tale for me next time I'm eating bread!

    That's about all the advice I can offer. It must have been a very scary experience. Hopefully others on this forum will have more input.

    • kristyk
      kristyk lily65668

      Posted

      You are so right on keeping calm during something like this. It was sourdough bread and I knew it would resolve itself. But after 2 hours I realized this time was different. I am going to have to change my diet and I'm not going to eat sourdough again. In fact years ago my mother while out to dinner was eating sourdough bread had to call 911. You think that would have made me a little more cautious. Thank you for your advice. I appreciate it alot.
  • jennifer09136
    jennifer09136 kristyk

    Posted

    Hi Kristy, It seems fair to say that everone with SS has different symptoms of different strengths. I have only the very stereotypical dry eyes and dry mouth. Both severely so. I have had many experiences of food getting stuck, especially meats and breads and have developed many strategies to manage this, none pharmaceutical. I never drink when food is stuck as sometimes the fluid has shot straight back out which only doubles my anxiety. The 1st line of defence is prevention and the 2nd is remaining as calm as possible if something gets stuck- neither are easy at all.I have found that the deep, slow breathing i Learnt for childbirth helps calm me and gives me something else to concentrate on until the item passes. If you live alone I understand that it was a very frightening event. If you do live alone then I would suggest that you do need to become selective with food. i manage my diet by choosing carefully and situationally - when eating out i can't pick what i really want to eat, but what i can manage to swallow easily. My diet is boring but that is better than risking a public (when out) or solitary (when home) choking event. I never eat bread without either a spread or a diipping oil to lubrictae. I never eat meats without a gravy or sauce or some soft vegetable like pumpkin or mash. The other thing i do will not be for everyone - there is an association with SS and development of oesophageal webs. Some doctors do not support this. My gastroenterologist has said "we do not know for 100% if there is an association, but for you 2-3 yearly endoscopies open your web (diagnosed by scans) so we will go with that therapy." The endoscopies open the web and my swallowing is vastly improved until the web slowly redevelops ove the following 2-3 years and is repeated. Again, this will NOT be the case for everyone, but may be worth discussing with your doctor. I have had SS for 31 years now so my strategies are well used by now! Good luck!
    • kristyk
      kristyk jennifer09136

      Posted

      Thank you for your advice. I've had Sjogrens for about 20 yrs and this is first time this has happened. I realized I never wanted this to happen again so knew my diet had to change. I will make an appt. with my doctor and talk to him about the webs. I have never heard of these and really appreciate your knowledge on this. He was scheduling a barrium xray to see how my esophagus was functioning. I will be seeing soon. Thank you again for your help and information

      God bless you

      Kristyk

  • jordan58854
    jordan58854 kristyk

    Posted

    I just want to say that this can be a problem for anyone, especially if you are not chewing your food sufficiently. I think you will be alright if you make sure to take every bite seriously. I recently had a similar experience with the same feeling in my chest when I was eating a very dry sandwich. I did drink sips of water which did resolve the issue. Make sure to swallow very deliberately as you drink the water to make sure the food goes down. It was very frightening at first. Please also remember to sit down and be calm when you eat. I was rushing about and standing while eating, which was not very intelligent on my part. Okay, you take care and remember we are here for you. 
    • kristyk
      kristyk jordan58854

      Posted

      Hi Jordan, Thank you for responding to my situation. The reason this time was so different was because when I did try to drink it immediately shot back out which only made things worse and my fear and anxiety took over until I calmed myself down and did my deep breathing. I know and usually do chew my food and sip my drink. This was one of those times I got careless and ate too fast. I will never do this again. Just a big wake up call to myself and a reminder to others to be careful eating if you suffer from dry mouth. Thank you for being there.

      God bless u

      Kristyk

    • lily65668
      lily65668 jordan58854

      Posted

      Totally with you on this one, Jordan. Although my intermittent problem with swallowing is partly due to slight lack of saliva, it's mainly down to my tendency to gobble my food. In general, I make big efforts to eat consciously, and never while reading - this being the main cause of "unconscious eating". I also make sure these days that I eat properly while sitting at the table. On occasions when I need to eat quickly because I've misjudged my agenda and need to stoke up before running out again, I now eat full-fat, unsweetened yoghourt with a sliced banana instead of reaching for a slice of toast. This really works!
    • shaq26875
      shaq26875 lily65668

      Posted

      I usually dip my toast in my tea to eat it... can only do this when at home and if elsewhere i avoid toast. Rice also has a tendency to build up in my oesphagus after a few mouthfuls causing a lot of pain in my chest..especially rice which is not covered in gravy and the grain is fluffy and separate (basmati rice). I have to stop eating for a while and resume once the built up food has gone down. I don't suffer from a dry mouth anymore so dont understand what is causing this.....perhpas just a bad habit of eating too fast.  
    • aitarg35939
      aitarg35939 shaq26875

      Posted

      Hi y'all

      Tons of non-Sjogren's folk have these exact problems - well, except for that web thing, never heard of that before now. People with bad GERD and/or hiatal hernia and/or aging esophagi are advised to avoid bread, especially any form of white bread, plus white rice and all alcohol. Tho I love it, sourdough is the worst for me because of both the texture and the effect of that sour in my stomach. That feeling which I call rock-in-the-chest (or sometim as if the stomach-intestine opening got sealed off) can be a sign of gallbladder issues. The water coming back up is also akin to reflux.

      All of these problems exist independently of or alongside ss. Ditto for the aging esophagus, which becomes both less pliable and harder to keep open. The barium swallow can diagnose this. If necessary, they can do a little stretching technique under light anesthetic. This may have to be repeated occasionally.

      With all of these, one also may want to question what immediately preceded that bite of bread. If it was any drink as cool as 55°F - which probably includes tap or room temp in much of Europe, year round, that can trigger a spasm in the throat/esophagus. If the sips consumed post-issue are similarly cool, they can compound the problem.

      So yes, prevention is key, both in the form of avoiding trigger foods/alcohol/cold drinks, and in learning to chew our foods down to pablum consistency. When I read that almonds needed to be chewed at least 25 times I rolled my eyes and said, "yeah, right!" They are crucial to my cholesterol control, can't take statins. But here we are, many years later and I now chew those nuts about 40 times.

      The more one chews each mouthful, the more apt we are to get anything out of our pathetic salivary glands, but also the more one prepares the stomach. Further in terms of avoidance is reducing the amount of food we put in our mouths before we start chewing. Smaller bites are less apt to provoke problems, and to resolve more quickly if there is a problem. Drinking a little warm water with a small amount of lemon juice right before eating may help, too.

      Believe it or not, we are fortunate. Think of all the folk over 40 who've died from choking on food before now, versus having the options we have in terms of emergency services, knowledge and medicine. Of course that's zero comfort in the midst of a terrifying event!

      Oh yes: a small amount of bitters right before eating might help, solo or in some warm water. (Sigh ,,, it's so much more fun to consume the bitters in a cocktail ,,, sigh)

    • kristyk
      kristyk aitarg35939

      Posted

      Hi aitarg, I read your information regarding dry mouth ss, gerds, acid reflux, hiatal hernia how it effects our

      esophagus etc. I have most of those problems that just coexist with each other. Thank you for explaining it the way you did. It has helped me in how my eating habits will now change. I am also taking all of this info with me when I see my doctor before my barium xray. I really thank all of you involved in this forum for all your help. It means so much. God bless all of you

    • aitarg35939
      aitarg35939 kristyk

      Posted

      Right back at you, KristyK, and I hope all goes well with your doc.

      (And of course this evening I gave myself a hard time with a buttermilk waffle ;-) )

    • lily65668
      lily65668 aitarg35939

      Posted

      With you all the way aitarg - this can be related to SS but can also be coincidental. And yes, several of my friends - like me, "of a certain age" - complain of the same thing, even though they don't have SS.

      I think all of your suggestions are helpful. In my case, it's taking in smaller mouthfuls that is the most effective, as well as waiting till one mouthful has gone down before taking another one. I'm sure all this will seem perfectly obvious to most people, but I'm afraid I've always been a bit of a greedy-guts, eating my food much too fast. I've had to learn a whole new way of eating since the age of about 50!

    • aitarg35939
      aitarg35939 lily65668

      Posted

      Yes Lily, in my early 30s I realized that I mostly bolted my food after just a few chews. Took being in my 40s and unable to tolerate all the pills developed for heartburn in us fat Americans before I finally began making the connection between bolting one's food and acid reflux. I still re-learn the lesson every now and then ,,, sigh ,,,
  • jordan58854
    jordan58854 kristyk

    Posted

    Today, I ate some pretzles, which I know I should not because they are processed. None the less, after about ten small ones, I got some chewed pretzel painfully stuck in my throat. My take on all of this is that dry for caused this, especially eaten fast or without liquid. It was an unplanned experiment, but I think I resolved the cause, which I think is starches like bread. 
    • shaq26875
      shaq26875 jordan58854

      Posted

      I can only eat a couple of pretzels and then I have a problem of them getting stuck in my chest. As for almonds....cant touch them.. but will now try chewing them 40 times (thanks Aitarg) I had never considerd the 'aging' esophgus...sad

      ​Doesnt seem to bother my 88 yr old mother or my older siblings in their late 60s

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