Liquid diet due to swallowing issues, any tips??

[Jj01994]

I posted on here before about some swallowing issues, unfortunately they have gone from bad to worse. I started having issues at the end of January which we at first thought may have been caused by my anemia, but it was not. Beginning of February/end of January doctor sent requests for more tests and put me on a full liquid diet and I have been on that liquid diet since and it is now April. I am struggling to keep up on daily life. Had a barium swallowing assessment done and showed I was asperating some fluid and using an accommodationand to swallow, tucking my head down then up to swallow. After that an endoscopy that was at the end of March and biopsies still waiting on the results but so far nothing really figured out yet and it is stretching further and further on. I am so fatigued and loosing weight not super fast but still noticeable, like I went from a D-cup to a C-cup in a few weeks and most of my pants are getting baggy. I have had several days where I have been so unable to do anything that I have been sent home from college and had to spent the day in bed. Other days my blood sugar has dipped below 3.5 and I have had to be forced to drink something. I do have Hypoglycemia so low sugars are already common for me like 1 to 3 low events in a month or two months if I am lucky but now it is 1 to 3 a week. Doctor has me testing regularly now where before it was only if I felt low to see how low I was. With everything going on I am struggling with my college classes I am a first year BSN student and had to wait 4 years to get in so I really do not want to have to pull or drop out. I have classes till the end of May then it is summer break so I am looking for any tips or help I can get. So has anyone else had long term liquid diet and if so is there any tips on making it work with daily life.

*Edit - I had still been doing MTX injections until my endoscopy but have not since then.*

[oldtimer]

I know that some speech therapists help people with swallowing issues. It does sound from what you say as though it could be a habit which has developed and needs to be 'unlearned' in some way. They are the specialists in the actions in this area and may be able to help learn another way of swallowing.

[Jj01994 in reply to oldtimer]

Unfortunately in my area I would have to travel 4-5 hours away to see a speech therapist, I had to see one before for damaged vocal cords a few years ago and it was crazy trying to get in to see one.

[Kerensa21]

That sounds awful for you, 2 months is a long time to be on a liquid diet, you must be exhausted. I really hope they get endoscopy/biopsy results to you soon & get to bottom of it. Can you take smaller amounts, little and often? Can college send work home for you until end of May to give you some rest /respite from it all, bearing in mind your situation/health at the moment? Kindest regards

K x

[Jj01994 in reply to Kerensa21]

So exhausted, I am drinking stuff almost all day long and sadly my classes now are mostly clinical hours and in May are all clinical hours so no way to do it at home.

[Susie-Q]

Sorry to hear your news . You must feel exhausted. Do you suffer from any type of Anxiety problems? Anxiety can appear in many different ways and forms and difficulty swallowing is just one of them. Good luck with your test results. I hope they get it sorted for you. 🤞🏻

[Jj01994 in reply to Susie-Q]

I am so exhausted. I have OCD but it is usually under control, a little bit less under control right now as I can not take any meds but still managable.

[Nessa28 in reply to Jj01994]

I'm so sorry to be reading your problems. I'm not really going to help , but I wanted you to know I care . One thing though I see you have OCD , just a thought have you put in place coping mechanisms for when you're not having your usual routine , I only ask , as I had to bite the bullet a few years back and got CBT this has really helped me , I'm still a total control freak but doing this has helped me to help my daughter with her ticks as they are off the scale during exam season . I hope it's sorted soon , please try to not over think or that will make it harder to get well . I don't need to tell you this you're the clever one . Thinking of you sending you massive hugs 🤗🌷xx

[Jj01994 in reply to Nessa28]

Thank you!! I have some coping mechanisms in place so far they are working, have had a few harder days but thankfully they have been on weekends not weekdays. Again thank you!!

[Nessa28 in reply to Jj01994]

🤗🤗🤗 keep strong remember you never fail by asking for help . However you stumble when you're hard on yourself 🌷x

[happytulip]

Have you been tested for myositis or at least had the mI2a antibodie test? I have multiple overlap AI disease and when I very first got sick I couldn't swallow, it was something I had to really force. If I get a flare up I have a similar problem.

[happytulip in reply to happytulip]

I was going to add that if you are aspirating then something is stopping your body swallowing normally. I do hope that you can get it sorted soon.

If I can't eat (which is rare now) I take protein shakes, but a good brand without nasty additives etc. I need the protein to build up my muscles and the high protein shake keeps the hunger at bay. Good luck .

[Jj01994 in reply to happytulip]

I probably have been tested but can not remember for sure if it has been done lately as I have had so many tests lately. I am drinking protien shakes a lot but I am still having fatigue issues. Also getting sick of them too. What brand do you use??

[Hidden]

Hi, You did not say if you are on any other drugs. I took methotrexate tablets, which caused me to have hairloss, problems with nails and toenails, bad balance. I stopped taking this. Methotrexate causes swelling of the throat, lips, face among other things. I found a free app called Drug Index, this tells you all about drugs. There is a interaction part where you can find out which drugs you should not take together. Please always read the info that comes with your rx. Doctors don’ t tell you what a rx can cause unless you ask and than they still don’t know it all. I’am not a doctor and I don’t like taking drugs. I would stop thinking so much about this and get back to your studies and eating (food) a good diet! Good luck!

[Jj01994 in reply to Hidden]

I am usually on a lot of medications but because of the swallowing issues I have not been about to take most of them. I have an amazing pharmacist who checks over my meds and alerts me to any possible interactions with my meds. I do have an interaction with two of them causing a more sedative effect when taken together so I make sure not to drive when I take them. I have not taken my MTX since March 22th because of the endoscopy with biopsies and also how weak and fatigued I have been. The meds I am on right now only liquid allergy meds when needed, liquid iron and liquid multivitamins for the last few weeks.

[happytulip]

I would urge caution if your barium swallow showed that you are aspirating. As you know that means that when you swallow some of it is going down your trachea and into your lung. The last thing you need is to develop aspirate pneumonia caused by solid food sitting in your right lobe.

Can you ask your GP to expedite any appointments and can you see a dietitian so they can get you on a good diet that is safe with your swallow?

I think professional medical advice is the best path for you. My experience that I have shared has come from my own personal experience and professional experience working in medicine.

There is a link with Methotrexate and autonomic dysfunction but aspirating after a swallow is quite extreme in my opinion.

Wishing you the best of luck!

[Jj01994 in reply to happytulip]

In my tiny town this is expedited and I would likely need to go away to see a dietitian specialist. So far doctor says to stick to a full liquid diet with no solids.

[Jj01994]

UPDATE

I got the operative report for the endoscopy and I have a 5cm hiatus hernia. Still waiting on the biopsy results.

[Nessa28 in reply to Jj01994]

🤞

[Jj01994 in reply to Nessa28]

Thanks!!