Loss of taste anyone? Taste buds shot

hoping to get some insight bc many of us have been on meds and my g.i. surgeon thinks its from the many biological drugs used to treat arthritis. ( RA) " fall out" .  i doubt that. 

i have not seen any topics on lost of taste related to ibd.. or surgery . or meds here. so am i the first?

i stopped those meds in Aug. 2023 this year.

recently had ken butt  5 weeks ago. ( Oct 9)  and taste loss is worse. 

 

im writing this at bedside in hospital cause i was admitted for low blood pressure due to dehydration.

bp was 90/50. . i am now 120/80

back to normal. 

 

so how can u stay full fed and hydrated when drinks taste like ?? toilet water?? ( best guess). and food = cardboard?

 

 

 

 

Franks hot sauce on everything. 

I've had a lot surgery over the last 30 years or so, after surgery for a few months most things taste disgusting to me bread been the worse one of all I've just got used to forcing myself to eat...I have FAP so nothing to do with  IBD in my case.

During my 3 month hospital stay, I had a problem with my tongue that no one could really explain. Mostly because they were too busy trying to save my life and I was too doped up to make a big deal of it. It was like my taste buds had detached from my tongue and were rolling off. I know that wasn't actually the problem. But, it plagued me for a couple of weeks or more. I kept having to wash my tongue with a solution they had in ICU. The sum result was the loss of taste buds at the tip of my tongue. It has left me with the permanent sensation of a scalded tongue at the tip to the point I have to be careful with hot food and beverages. It has got a bit better over time. But, I keep forgetting to bring it up with my GP. Early onset senility, I guess. Well, maybe not early... :-))

Daniel

Hiya warrior have you got oral thrush ? This can have same symptoms just a thought 🤔 xx

Hello, You're not alone!  I had to force myself to eat and drink after surgery.  For a few months things just did not taste good or tasted like cardboard as you said.  I drank Ensure shakes each day for quite a while, and had a piece of cheesecake which was the only thing that tasted good and had lots of calories - other things I just forced.  Finally got better for me, but I did have an incident a few months after surgery where I passed out in public and had to go back to the hospital for a bit.  So do make sure you stay hydrated even if you have to force it...others suggested Gatorade Fit or Liquid IV packets added to water for electrolytes.  I really hope you feel better soon !!  

You gotta force yourself to eat.  I found pineapple juice worked to help me swallow food bites.  Sip lots of water and an electrolyte beverage.  Like DexieB, I passed out because of dehydration.  It is the weirdest thing to not want food.  My wife used to beg me to eat, but I just couldn't do it.

isn't it amazing the stuff we go through thinking " im alone in this.. im going nuts.". and here the few.. the best.. say no.. im here too.

thanks everyone. i got discharged  after four liters of saline and one over night stay. 

incredible replies. amazing people with tactics or ideas to cope and watch out for.

i will reach out individually you. im exhausted. thank you.

a little bit of warriors in us all.

Warrior.

Hey Warrior,

Hang in there.  Last year I lost 64 pounds before my colostomy surgery.  That was when my wife was begging me to eat.  Then when I was in the hospital, I wasn't allowed any food or water for 3 weeks.  Just ice chips and moistened lollipop looking sponge things.  Got everything thru the 2 IV's and PICT line.

I'll never forget when I was allowed to drink hot chicken broth after surgery.  I spent about 10 minutes telling my wife and the nurses how wonderful it was.

It takes time and is hard.  But remain determined to recover.  

 

Try tomato juice or clamato, I craved it after my surgery. I would drink v8 once in a great while before surgery but like it a lot more since. I didn't lose sense of taste but was dulled for a bit and I was craving stronger flavors maybe.

Hi all like Bob48 v-8 was the only juice that i could taste for a couple weeks after the resection surgery i had a few years ago and the chicken broth just tasted salty, and when my stoma woke up the nurses would recommend what ever was the special of the day from the cafeteria but i would only get jello and broth, and pretty much the same when i got home.

G-Day Daniel,  You have just got my brain working. For about 1 year I have had this feeling at the tip of my tongue as if i have burnt it on hot food. I never related it to after getting a Stoma but it looks like its a real thing. We might have hit on something here.  Can we all make a comment if you have this sensation.  Regards IGGIE

Hi IGGIE. After doing a little research, I think that the suggestion of oral thrush by Caz67 may be what I experienced. The most likely culprit may have been all the antibiotics I was on. The examples I have seen pretty much describe what I had. It was like my taste buds got up and decided to roll off my tongue. I never got a diagnosis when in ICU and I keep forgetting to bring it up with my GP. Next time, for sure. I have to be mindful when drinking hot liquids.

Daniel

Do you like club soda with lime? Full of sodium. Never liked it before, now I do. I get sad when I visit a place I haven’t been in a while and something I used to really like is meh to me now. I could tell you all the good dessert places in cities but now I could care less- well sometimes-pms cravings can win out with sugar ha. I’m going to message ya about RA meds. Hope you’re resting well at home. 

Hello from Hockey Cards;

My husband could not eat anything following his surgery for bowel cancer.He had an Ileostomy installed also had a nasal gastric tube for way to long which added to the burnt mouth.He said everything tasted bad,He lost 60 lbs over 2 months in hospital.

He was on TPN and Ensure.

Once I got him home I asked him to describe his problem .He said his tongue felt burned  esp. on the tip and he had no taste buds at all.

A drug that works for us is Pregabalin 25 mg 1 cap twice daily.The drug according to our GP works on fine nerve endings .Within 5 days  restored my husbands taste buds and rectified his burnt mouth syndrome.

Hello this sounds like burnt mouth syndrome .My husbands GP started him on Pregabalin 25 mgs 1 cap twice daily.The drug according to the GP helps with nerves in the mouth and tongue.The dose helped my husband regain taste and took away the burnt feeling on the end of his tongue as well as other areas of the mouth.

Our background husband had  temp ileostomy installed following emergency bowel cancer in April 2023.

I hope you get hydrated as well.Even if you have to go to a place and buy 1000mls of NS and have them hook you up it is worth it.I guess there are places called drip bars that hook you up to IV hydration .I know the cost just might be very unattractive.

 

Hey Alex !!  good to hear from you!! how's it hanging buddy ?? listen, I'm not sure Shaggy would approve of this Sauce on the Scooby Doo crackers ..what do you think??

hi ben 38.

thank you for your comment.

appreciate your input ad far as surgeries go effecting taste. 

the worse for me was when i had a cochlear implant . everything tasted metalic- like. . 

thaat was years ago.  my taste in food came back.

until this year.  i cant put my finger on when the lack of taste began. i am thinking it over.

my dentist might  enlighten me bc after fabricating an upper partial denture, i believe thats when tasting loss began.

im gunna ask her as i continue my research. an on going investigation while i have time recuperating from the ken butt surgery Oct. 9th. 

i wish u well friend. thanks again.

- Warrior

Hey Daniel... I feel for you man.. you hang in there..

 

having the tip of your tongue scolded as you say you really do have to be careful with fluids and Foods.. 

I'm sure you figured out a straw might help.. I'm just throwing this out there..  but if you read down at the bottom of this thread,  you might find a solution ..

someone commented about a medication which I'm going to address a little bit later..

I think you should also check out Google and Google this in quotes "medications that make you lose your sense of taste"

there's a couple of explanations in there with what you have..  and it's really amazing ..a world of information at our fingertips..

so you go check that out if you haven't..  I'm still in the process of making notes from that Google search and quite frankly its  giving me a headache ..

be well my friend..    but lmk yur thoughts..        Warrior

caz 67. .  i read yur profile. the photos had me laughing .

good point abt the thrush.

i had that along time ago.

correct me if im wrong but tell tale signs of it would show white  dots? or perhap a lizard white tongue?  not only on top or tongue but along sides of it.

i think it was swollen  too. 

an E.N.T. provided tablets to suck on. resolved it in a few weeks.

so for me.. thrush?? i dont  feel thats my condition.. but good point indeed 

IBD is tricky. they say any organ from mouth to butt hole can be affected.

in my rare case it took my hearing.

all of it.. go figure that one. 

i guess i was hearing " shit" a long time. 

thank u for the reply. be well.

 

- Warrior. 

 

dexie b. hey there.  so far yur story and mine vibe well.

thank u..  i am doing better. forcing the fluids and foods.

i find ice cold water better to tolerate.  otherwise its flat rasting.

im managing one decent meal daily with healthy snacks throughout the day.  working on two meals a day soon.

these sport drinks.. or electlyte drinks i believe are for working out. to replenish  lost sweat.

sweat is water. 

read below on my next reply what a google search revealed..

 

spoiler: milk and o.j. and water. best choices. 

TBC. ( to be continued)--- Warrior.

 

 

Hi warrior

Not always white dots on the tongue or side's. Can be yellow coating but again not always. What ever it is I hope you get to the bottom of it my friend XX 

Good morning yeah I'm going to go see my ENT this afternoon and hopefully  be pointed in the right direction I have some information for my research that I can ask her about from google..

 I might have more details later but I really don't think it's thrush I'm leaning towards  maybe this denture that I have ... I'm trying to recall after having that done if my taste actually started changing so I'll get back to you on that ..okay?? you have a good day

hi. answered your private message.

but in reply to the above..i stay away from carbonated drinks.

reasons being sugar and a gassy result.

water and juices work for me now.

ice cold water seems tolerable. 

my ENT should advise me if she know her stuff this afternoon. 

someone  here posted abt a pill that helped them recover their taste.

wow!  gunna throw that at the dr. later.

this thread or topic is hot stuff. 

who knew it'd gain so much ground.  im gunna offer a summary once my head stops spinning from the input and research. 

TBC. - Warrior

 

TPN and Ensure conjure up memories! :-) I was on TPN for the better part of 4 months following my surgery. When I was able to start something other than clear liquids, Very High Calorie Boost was an integral part of my diet. :-)

I will talk to my GP about things the next time I see him. Things are a bit better than they were at the outset, but the scalded feeling at the tip of my tongue persists.

Daniel

Thanks, Warrior. I will check out your suggestion.

In regards to straws, I have never been fond of using them. They also tend to generate gas in your system, so I still stay away from them. I just tend to stay away from hot beverages or at least let them cool a bit. :-)

Daniel

whatever work for you Daniel.

i hope u get yur issue resolved soon.  i cant imagine having the tip of my tongue like that.

im dealing with a full mouth of tastelessness. 

i saw ENT.  she examined nose and mouth. over an hour.

nothing found but it might be a vitamin deficiency.

i am seeing the PCP.  for those labs. but also thinking my dentist needs a call too.

a yr ago had upper denture made and i think that when this lack of taste started..  TBC.

hang in there buddy. 

- Warrior

 

Good morning all!! Original poster Warrior here..

I just wanted to follow up on the loss of taste situation that I'm having, trying to find an answer to the question  why I have lost my sense of taste in my mouth??

 

I've spoken to the dentist and apparently she doesn't feel it's the partial denture..the upper partial denture... I've seen an ENT specialist she can't find anything wrong inside the mouth..

I'm still waiting for an appointment for blood work through my primary care but as it stands today the most common causes are covid and a cold,both of which I do not have..

so in my quest to find an answer,I will report later but it's interesting to know that the dentist threw out the idea that it could be the partial denture..  the problem is Google!! 

 if you Google "what medications cause loss of taste" and if you Google "do dentures result in loss of taste" you will find a lot of information that may support an answer to why you lose your taste.

one significant thing they mentioned was age.. as you age your taste buds die off.. another was covid as mentioned earlier .

as I did more research, I found that that a partial denture could also result in the loss of taste and as you look up articles you can get 5 articles agreeing to this fact and five articles not agreeing to it so I think it's a cause of Common Sense and also what you honestly feel the problem might be..

so on that note, I'm thinking I have a situation with the Denture which is known to cause loss of taste because basically you're covering i the roof of the mouth which has your palate and believe it or not  taste buds..   so if you're covering it don't you think you'll have a sensation of loss of taste ??  I also found out Methtrexate will also cause a loss of taste as well as long-term use of steroids and in this case prednisone.  I still haven't found a concrete answer..

I don't know if I ever will but I just wanted to update that you guys know I'm still working on the original Thread about loss of taste what caused this and I'm having problems accepting the fact that it could be old age and it's not covid..

I aay horse feathers!!

and I'm leaning more towards the fact of the Denture and long-term use of prednisone and possibly vitamin deficiency are the culprits.

this my case. my thing.

noting over 300 views so far, I am tempted to say others out here might be experiencing something similar but are too shy to comment. 

don' t get caught watching the paint dry.

 

blood work has arrived.

no vitamin deficiency found.leaning towards long term use of prednisone " fall out" as the culprit.

eating food is no longer enjoyable.

as weight sheds, i certainly am glad im at the desired weight i should be at 5'11".. and equally glad there is an appetite. 

keeping up on fluids..juices.. fruits is helpful. but dammit..where's the meat? 😋

 

Beautiful Day, Warrior!

Might not be the Prednisone, I 've been eating that nasty drug since 1987 for a kidney transplant, n