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Hi I'm Cath I keep chocking on my food, and I have to wear a permenant catheter

Posted , 7 users are following.

cath23317
cath23317

I think that my sjogrens has caused a lot of my problems, my Dr gave me lanzaparole because she thinks it is my reflex is causing me to choke, I have had reflux for years and no problems, I'm also having problems with my pip, I wish I could prove to pip that I need my high mobility and middle dla, now they have put me on the low one, can you tell me, panadol, tramadol, gabapentin is a mild pain killer gosh they realy dont know who needs it and who don't

0 likes, 22 replies

22 Replies

  • amkoffee
    amkoffee cath23317

    Posted

    Actually Gabapentin is an anti-seizure medication often used for nerve pain but it's actually not a pain killer. However Tramadol is a pain pill used for moderate to severe pain. And Panadol is simply acetaphetamine. I'm guessing you're taking all 3 of them. And that would make. A lot of people will take a painkiller such as Tramadol along with Gabapentin the nerve drug. But I don't know about the Panadol. I'm not sure what that would be good for. I know I've been having some problems with swallowing too. I do sometimes choke and I had no idea why that was, I certainly didn't attributed it to my Sjogren's syndrome. But I have so many issues it could be any one of them causing the problem. I hope things work out for you. I really don't have any advice for you. I do hope you get this figured out and get it resolved

    • cath23317
      cath23317 amkoffee

      Posted

      The Dr has now put me on 1200, 3 times a day plus my Tramadol, I have lots of medical issues as well, I have a M.V.A, where an artery is going into a vein in the core of my brain, there is no operation, and many more, I have to have permenant catheter now, I'm wondering is that down to Sjogrens as well as chocking, I don't eat out in case I choke, you can't breath with it, it's scarry 

    • aitarg35939
      aitarg35939 cath23317

      Posted

      Part of the swallowing issue can be as simple as you've less-to-zero mouth saliva and your esophagus is drier, both due to SS. Of course this isn't simple in terms of treatment.

      Many folks on this forum have made many adjustments to their eating habits because of choking problems.

      Wish I had something more cheerful to say.

    • cath23317
      cath23317 aitarg35939

      Posted

      It is so scarry I wont even eat outside in cafes or resturents, if I have to I sit by a door so I can run out Thank you for the help 
  • Megheart
    Megheart cath23317

    Posted

    Autonomic involvement with S.S can cause levels of paralysis in various parts of the body. Therefore, perhaps and I only say perhaps, the motility in your oesophagus and swallowing muscles is impaired. 

    Likewise for the bladder where urinary incontinence or retention can occur.

     

    One of the very first symptoms I mentioned to a neurologist was that I felt I couldn't swallow very well. She did a cursory examination (looked in my throat) and said everything was ok. Rubbish.....it was not OK as within a short while, oesophageal motility studies revealed disordered and reduced peristalsis of the oesophagus during swallowing.

    So neurological symptoms can affect a lot of S.S people.....this can include balance issues (dysautonomia), heartrate (POTS), paralysed GI (gastroparesis and severe constipation), peripheral neuropathy etc.

    I hope you can get some solution to these awful choking episodes!

    • cath23317
      cath23317 Megheart

      Posted

      Yes thank you, it has helped a lot, the trouble is my Doctors Surgery does not know enough about SS. It is so scarry when it happenes I try and not eat food that will irratate it. I can even choke on porridge, 
  • kristyk
    kristyk cath23317

    Posted

    Hi cath23317, I have had swollowing problems and esophagus problems for years because of Sjogrens Syndrome. I have had to call 911 two times and paramedics had to take me to ER. It is absolutely the most frightening experience. I thought I was going to die.The food got stuck on ledge of my esophagus. My mouth gets so dry and i have to chew my food so slowly and carefully and drink sips of water before almost each piece of food. I have had to completely change my diet. No bread, chips. meats etc. Foods that are soft, gravy or sauce like foods. Its hard and certainly not fun. When I go out to eat I always order the easiest to swollow item on the menu, like soup. I would hate it if I choked on public. When i was taken to ER because food had been stuck in my throat for 5 hrs. Relaxant shots, and other methods to disolve or swollow the piece of food

    the ER docs had to call an emergency gastro doc in to do an endoscopy. They did it right in the ER. When I woke up the relief was unbelievable. A little sore throat but the food qas gone. My doxtors now have recommended i have my esophagus stretched every 2 to 3 years. Whatever it takes. Each case of Sjogrens is very different but the dryness in our mouths and eyes a most commom. I wish you best. God bless you,

    kristyk

    • cath23317
      cath23317 kristyk

      Posted

      I know, like me we have to struggle through, some people dont realise what living with Sjogens is like, I have Lupus as well, and many more we have to keep going xxxx

       

  • Tumtum1963
    Tumtum1963 cath23317

    Posted

    Yes I have this problem as part of my Sjogrens too. It is really horrible and means I drink gallons at mealtimes. For me I think it relates to scid reflux and autonomic issues rather than oral dryness as my mouth is only marginally dry compared to eyes or swallowing issues. I also have developed chronic constipation over the past year. Again I think for me this is due to the neurological aspects of Sjogren's meaning that my oesophogus and colon don't function as they should because of mixed messages to and from the brain. 

    • cath23317
      cath23317 Tumtum1963

      Posted

      Hi Tumtum, I use Manavac for my constipation I find that useful, I can't get used to my catheter, it's not flowing properley, it's just a slow trickle, it can take 5 minutes to wee 4oo mls, I can't take that long when I'm out, I even leak over my catheter, it's horrid, when I'm in the house but not good when I'm out, xx

       

    • Tumtum1963
      Tumtum1963 cath23317

      Posted

      Sound really rough Cath. How dies the catheter relate to the swallowing issues though? Have you checked out autonomic dysfunction or had this assessed yet? 
    • cath23317
      cath23317 Tumtum1963

      Posted

      It's the SS has caused my throat muscles that are causing me to choke, and it's SS that has caused my bladder not to work SS has a lot to answer for xx

    • Tumtum1963
      Tumtum1963 cath23317

      Posted

      Yes I feel same way about it as you. Nothing seems to function properly for me either - apart from my bladder thankfully. For me the boqel issues are terrible and so is the reflux and peripheral nervous system Such an underestimated disease. X
    • Tumtum1963
      Tumtum1963

      Posted

      Sorry that should read as bowel issues.
    • cath23317
      cath23317 Tumtum1963

      Posted

      It's terrible, I'm suttering from bothe ends like you, but I make a joke of it, I dont thing there isn't any part of that has not had a pipe in me, my nose included xxx

       

    • Tumtum1963
      Tumtum1963 cath23317

      Posted

      Yes snap apart from my ears which just got a torch! I am so fed up with NHS and ARUK for saying it's usually just a disease of dry eyes and mouth!

    • cath23317
      cath23317 Tumtum1963

      Posted

      Yes I agree, it is so silly, the annoying part is Doctors don't know much about SS and Lupus, their favorite saying it's a virus lol xxx

    • cath23317
      cath23317 Tumtum1963

      Posted

      For my dry mouth I use Glandosane, it's a spray it's artificial saliva, it's ok if you are on a bus or something like that, but in the house I normaly drink coffee, pop or water, my dry eyes I use eye drops or artificial tears but they don't last long xxxx

       

    • Tumtum1963
      Tumtum1963 cath23317

      Posted

      The thing that I find frustrating is that even reputable health information sites play Sjogrens down and say that many people are probably undiagnosed because they never see a doctor about their symptoms. I think it's much more likely that they do see many doctors but get told they have Fibromyalgia or ME or are just women of a certain age.

      The symptoms we have would be very hard to ignore - small fibre neuropathy everywhere for example, or feeling as if you've swallowed a gobstopper or having bilateral joint pain on a pain scale of fractures? Or being dizzy with tinnitus and nose bleeds or upper and lower GI issues. And I don't suppose you are I are the exception.

    • cath23317
      cath23317 Tumtum1963

      Posted

      Yes I agree with you, I reckon all doctors should go on a course about SS then they will know what we are talking about xx
    • paula09418
      paula09418 cath23317

      Posted

      Hi. I have sjs too and swallowing is a bad part of it! May I ask why you have s permanent Catheter?

      I am having problems emptying my bladder...is that a sjogrens problem?

      Thank you for your help

      Paula

    • cath23317
      cath23317 paula09418

      Posted

      Yes I think so, nobody has said but my muscels have closed down, my G.P thinks so, have a chat to your Docktor about self catherising, that's what i started with first thats much better than haveing a permenant catheter in xxxx

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