Outright Failures and Epic Solutions / Social Eyes Upon Me / Wax Nostalgic

B12 or B52?

I got totally crazy here at the nursing home Sunday evening… thought I might try the B12 drops I purchased back in December. Really, I decided to tempt fate in a fit of desperation, seeking out a means to (eventually and possibly) resolve my intestinal disorder. Previously, B12 supplementation in any amount and in any form caused notable heart palpitations (days after the fact), as well as temporarily initiating an uncomfortable buzzing energy. But this time, things were far different!

I took 1/4 of 1/8 of a drop, and placed it on my tongue.

And I was flushhhhhed.. with bodily warmth and a sudden urge to defecate. Hooray!?? I also became slightly hyped up… possibly a post-anxiety result after having taken the vitamin. Or maybe the B12 truly ratcheted up my nervous energy levels by its own making.

In prior attempts, B12 has unleashed nervous uncomfortability. So maybe that's it (although previous instances involved vitamin B complex).

Monday, not Mundane

Next on the agenda was changing my probiotic. When I discovered that my current probiotic (that I've been taking for the past year) has potato in it, I nearly lost my luggage. Potato is very bad for me. Potato renders me lethargic and without energy. It also initiates an all encompassing brain fog. And that's from ingesting a small amount. A very very small amount.

So I have to assume they changed the ingredients in my probiotic without formally notifying me. Jerks. I believe it was rice powder before, before miraculously turning into potato starch.

This time I took 1/4 of one capsule with applesauce. And once again, bad things happened. Not awful things, mind you. But my body reacted poorly.

The entirety of my muscles instantly weakened. I was suddenly exhausted. And I had difficulty moving my limbs.

What the hell… right?

Psychosomatic? Did I get a result that I was wanting, needing, and looking for… or even fearing? No. I don't think so. Really, I don't. I did not anticipate any reaction whatsoever. I've been taking probiotics for years without any recognized consequences. But this product has an added unfamiliar ingredient (to me): streptococcus thermophilus!

Maybe that's bad. So please, tell me if it is. This IS a need to know basis.

The brand name is NOW, and the probiotic in question is supposed to help digestive issues - as it contains 25 billion radioactive particles per capsule!

Later Tuesday Evening

Muscles gone. Destroyed. Feels like the old days. It's been hours. Hope to recover tomorrow. Sometimes self-experimentation truly sucks.

Slow Mindedness / Quick Solutions

I've been explaining and detailing how my feeding tube stoma has been leaking and flowing excessively, causing unreasonable pain (as well as other nerve sensitivity complications).

So okay then, let's not go there again. Instead…

I had an epiphany. An intuitive experience.

A singular word made itself known to my visual mind… presenting itself. And then suddenly everything made sense.

"Fast!"

Not my favorite four letter word. But wait, there's more.

As a rule, I must pump nutritional sustenance into my body 24 hours a day, 7 days a week. It's very necessary that I do so in order to receive a life-sustaining amount of food and fluid. Beyond that, I do something that most human beings never do. I eat while I sleep.

I mean, think about it. I have food pumping into me all night long, as I slumber. And what dawned on me is that my intestines never get a break from processing food. Plus, while we humans sleep, peristalsis slows down considerably. Our intestines shift gears, as do the rest of our bodily organs. And sleep time is also clean up, repair and recovery time. And I haven't been allowing my body to accomplish these tasks uninterrupted since early 2019.

So I decided to change my routine. Overnight, I ran straight water only. And now, my intention is to run straight formula during the daylight hours. No water added. Make sense?

And the preliminary results…

I woke up this morning and my bandage was dry. No formula leakage whatsoever. No bleeding. No bile. No burn. No complications whatsoever. And very little abdominal bloating.

In comparison, over the past couple of weeks, I typically wake up in pain during the wee hours, having to perform extensive wound maintenance. Re-bandaging. Taping. Irrigating. Medicating. Applying ice. Etc.

The entire process takes up to two hours start to finish… although a lot of that time includes airing out the wound.

Either way, I woke up bone dry at 5am. Nice. Very nice. Super nice.

So yes. In a sense, I did fast. I fasted.

Thirty minutes after resuming the feeding formula, I became bloated once again. But that's okay. Because my morning bandage lasted throughout the day and late into the evening. It's 10 p.m. right now, and this bandage is still in great shape. Amazing! Truly it is. I am pain-free.

In the least, my stoma has had a chance to heal. All day long there's been little in the way of irritation. No burn.

Day 2

Less success. That's what I am reporting. With aching exhausted muscles I gave in and added some formula to the mix at 243am. That doesn't mean my new efforts have failed, but I may still be experiencing negative consequences as a result of the probiotic and / or the B12 experience.

Yes. I am frustrated. So many failures.

"Can You Hear Me?"

An immediately engaging woman came up to me in the hallway and said many things in a short amount of time. In response, I opened my mouth and said many unrelated things back to her. And in response to that, she furnished an expressionless face. Or perhaps she was simply befuddled.

"Take off your mask."

I obeyed her command. Then I said a few more things. And this time she laughed and smiled.

"Now I understand. You were being humorous."

After that, everything clicked. We both understood each other, possibly forever more. Then, the next thing I knew, she stuck something deep into my ear hole. It was a sort of instrument. Not like a banjo or a saxophone or anything like that. Something more compact, less musical.

In any case, she then stuck her instrument in my other ear hole, too. And that's when she made a determination.

"You have badly impacted wax. And you know what caused it?"

I did, but she didn't. Despite being all lips and smiles, I couldn't help myself. I corrected her even before she finished my sentence.

"Nope. Not Q-tips… something way worse than Q-tips." I offered.

Her left hand went directly to her right hip.

"Appendicitis? Ah, never mind," I stopped myself.

She seemed to know what I was saying, then overcorrected… rectifying her persuasive posture. I have an unhealthy obsession with McBurney's Point.

"Earbuds. And earplugs. That's what's impacted me."

At first she didn't want to believe me. But then she decided to believe me. She let her guard down. Soon thereafter, her mask followed. Come to think of it, she didn't have a very good guard. It was rather penetrable. Or permeable. No force field in sight. No brick wall cohesively constructed. Nope. She was open to the obvious and all inquiries.

So I asked her things. And this doctor person happened to be a musician, playing piano and other assorted instruments. So we got into musicianship matters for minutes at a time. And then all at once, I realized I should be asking her medical questions regarding relevant and related doctoring things.

So it turns out she may be back someday to resolve the issue. Or she may have someone else resolve the issue for her. She mentioned something about sticking things in my ear and removing the wax manually, some kind of contraption, but she also mentioned drops of hydrofluorocarbons. Or peroxide alginate. Or some mixture of acetaminophen with tetrazzini, brought to a rolling boil.

At that juncture, I didn't really care what she was saying anymore. What's most important is that I met a new person who spoke upon matters worth contemplating and considering. I am easy that way. Presence and intelligence. A willingness to be amused.

Having been momentarily lost in thought, I have no idea what's next on the agenda. And heck, what was her darned designation? …was she an ENT? Perhaps she was on a scavenger hunt. A random human being just passing through. Brandishing medical instruments.

So perhaps my difficulty in hearing has something to do with the impacted wax. I guess we'll find out if and when they choose to resolve this issue.

Solo Contende

I just had an hour of socialization with my pretend adopt-a-family crew. Remember them?

This time, the 16-month-old was being bashful, but otherwise responsive in all the ways that seem to matter most. We interacted considerably, playing peek-a-boo and other Now You See Me, Now You Don't types of games.

It feels good, these people purposely making the effort to spend time with me, when nobody else from my former "real life world" is willing to do the same.

Day 3

Ran 95% straight water overnight (from 1130pm through 6am), and…. NO LEAKAGE! My bandage was dry from end to end.

But, I awoke feeling sluggish again. Muscles aching. So probably I shall keep bumping up the formula to water ratio, seeking out some semblance of overnight feeding nirvana.

Coda

Thanks again for the cards and gifts recently sent… totally unnecessary, yet appreciated all the same. You folks know who you are. :)


Take care,
Howard



Late Afternoon Updraft -
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Early Afternoon, Cerulean Delight -
20220329_112408~2.jpg

Comments

Hmm...that sounded like a very unusual encounter. Was she really a doctor?

Also please be careful with experimenting. Even though you're getting better in some ways, your health still seems pretty fragile. :(

Regarding that epiphany, that was good. Digestion does need to rest sometimes. I'm glad that particular experiment seems to be yielding some positive results.

As always, I like the pictures. Were they taken on the same day?
 
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I saw the b52's live and they were super fun....i think you should definitely go for the b52....summer of love variety....orange popsicles and lemonaaaaade.
 
I don't know if you've already mentioned this and it may be a dumb question but the stoma is going into your stomach vs small intestine right?

Is adding water to the tube feeding the way it is done generally? Is this what the Dr. or other recommended?
 
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@Judee - Funny, I'm not really sure she was a doctor. But she was definitely too young to be one of the residents.

In regards to my experimenting, I didn't really think my experiments were all that experimental. But of course, lo and behold, here we are with side effects, after effects, and weird unexplainable results.

And yes, those cloud pictures were taken on the same day. I took a whole series of them, graduating from white and fluffy, all the way into the dark and stormy realm.. clouds that eventually yielded rain. Yes. The ones that made me wet. Which I liked. Enjoyed. And appreciated.

@sunshine44
@Cloudyskies

I had a bad B-52s experience once when I was visiting some friends in Chicago, hanging out in a local bar with Bill Murray's brother (he was unaware of my presence). And for whatever reason, someone kept playing that god-awful B-52s song on of the jukebox. Or perhaps the jukebox was horribly broken. "Love Shack" - yep.. that's the name of that awful song. Back then I would have preferred listening to Metallica or Slayer. Or Jane's Addiction. Heck, Abba would have sufficed.

I remember when Alan Thicke used to be a real person. Gretzky, too! And Wayne Gretzky was involved in one of the few bets I've ever lost in my lifetime (no, I've not made many).

Back in 1980 both he and Marcel Dionne (of the Los Angeles Kings) tied for the scoring title lead with 139 points each. However, because Dionne scored more goals, he was officially crowned scoring champion. I did not know that rule. And thus, lost the bet with my best friend. And I vowed never to let that happen again. And I didn't! Haha… The All-Star Game must have been a cool experience.

@Tammy

Because it's a j-tube, the stoma accesses the jejunum directly, straight into the intestines. Upper left quadrant. Just below the splenic flexure.

Adding water to each feed bag is normal. At 4 bottles of formula per day I'm getting 2,000 calories (I average 3.5 bottles now). Formula bottles contain 70% free water. So all toll (with water manually added) I receive 1.5 litres of water per day.

That's not optimal, but a human being can survive on that amount. And mostly, I am human! Lol

Exciting stufffff
 
You wrote: Day 3...........ran 95% of water overnight........................no leakage.

This is very interesting.................do you have any hypothesis?

For one...............I'm assuming the water is diluting bile/acid?

It's strange though..................have you had this problem before? The burn and leakage around stoma?

Another thing I find interesting is the moment that the word 'Fast' entered your mind.
 
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You wrote: Day 3...........ran 95% of water overnight........................no leakage.

This is very interesting.................do you have any hypothesis?

For one...............I'm assuming the water is diluting bile/acid?

It's strange though..................have you had this problem before? The burn and leakage around stoma?

Another thing I find interesting is the moment that the word 'Fast' entered your mind.
I apologize, it seems as though I've written an extremely long and overly comprehensive response to your question(s) - feel free not to engage! :) LOL


Ever since I had COVID-19 I've experienced constant (and sometimes extreme) bloating. I'm assuming that's mostly due to all the antibiotics and antivirals they pumped into me in the hospital.

With all of that bloating, the stoma opening is the easiest escape route for excess air / gas.. because it hasn't healed and adhered to the feeding tube yet, due to all of the irritation (bile / pressure).

Also, my transverse colon is too upwardly compressed to allow gas to pass via the normal route (farting! - by way of ascending colon, the transverse colon, then descending colon, etc.).

I've increased my ginger and probiotic intake, in hopes to increase my peristalsis… to no avail.

The surgeon wanted to install a wider tube, but that's not the right answer. Resolve bloating.. resolve problem - as proven by the overnight water switchover.

The water doesn't dilute the bile, because the tube empties (in my jejunum) well beyond the gallbladder (feeding formula empties directly into my lower left quadrant).

However, my assumption is that because there's less food material (feeding formula) present and needing to be processed when running straight water, the naturally slower peristalsis (while sleeping) isn't as impactful. Clearly, humans weren't meant to "eat" while they sleep.

And I have had these stoma issues intermittently in the past couple of years, but they've been very short lived.

So, I do not need any additional surgical procedures, I just need to rid myself of this excessive bloating. The problem being, once I do see a gastroenterologist… eventually someday whenever the hell they set it up, it's likely that he won't have any answers oh, much less understand what the heck I'm talking about. The only thing gi's ever do is prescribe Reglan (very bad reaction 2019) and / or (again) suggest a larger feeding tube.

What I may wish to do is start with naturally fermented foods. Just a spoonful here and there. Something ground up or crushed to the consistency of applesauce. Something that I can somehow tolerate.

The problem being, I have limited access to the tools necessary to process the given foods (so that I may ingest them), and also, I have a billion and one food intolerances!

Digestive enzymes could also be a thing, but I've reacted very poorly in the past. Severe bloating and pain. Of course! Why not?

Joy of Joys. I think they just turned the heat back on. It's officially 79° outside. Or possibly it's the air conditioning. I can't f**** tell anymore!

Anyway, hope I explained that in a coherent fashion. :)
 
I apologize, it seems as though I've written an extremely long and overly comprehensive response to your question(s) - feel free not to engage! :) LOL


Ever since I had COVID-19 I've experienced constant (and sometimes extreme) bloating. I'm assuming that's mostly due to all the antibiotics and antivirals they pumped into me in the hospital.

With all of that bloating, the stoma opening is the easiest escape route for excess air / gas.. because it hasn't healed and adhered to the feeding tube yet, due to all of the irritation (bile / pressure).

Also, my transverse colon is too upwardly compressed to allow gas to pass via the normal route (farting! - by way of ascending colon, the transverse colon, then descending colon, etc.).

I've increased my ginger and probiotic intake, in hopes to increase my peristalsis… to no avail.

The surgeon wanted to install a wider tube, but that's not the right answer. Resolve bloating.. resolve problem - as proven by the overnight water switchover.

The water doesn't dilute the bile, because the tube empties (in my jejunum) well beyond the gallbladder (feeding formula empties directly into my lower left quadrant).

However, my assumption is that because there's less food material (feeding formula) present and needing to be processed when running straight water, the naturally slower peristalsis (while sleeping) isn't as impactful. Clearly, humans weren't meant to "eat" while they sleep.

And I have had these stoma issues intermittently in the past couple of years, but they've been very short lived.

So, I do not need any additional surgical procedures, I just need to rid myself of this excessive bloating. The problem being, once I do see a gastroenterologist… eventually someday whenever the hell they set it up, it's likely that he won't have any answers oh, much less understand what the heck I'm talking about. The only thing gi's ever do is prescribe Reglan (very bad reaction 2019) and / or (again) suggest a larger feeding tube.

What I may wish to do is start with naturally fermented foods. Just a spoonful here and there. Something ground up or crushed to the consistency of applesauce. Something that I can somehow tolerate.

The problem being, I have limited access to the tools necessary to process the given foods (so that I may ingest them), and also, I have a billion and one food intolerances!

Digestive enzymes could also be a thing, but I've reacted very poorly in the past. Severe bloating and pain. Of course! Why not?

Joy of Joys. I think they just turned the heat back on. It's officially 79° outside. Or possibly it's the air conditioning. I can't f**** tell anymore!

Anyway, hope I explained that in a coherent fashion. :)
It’s interesting that the bloating started after you contracted Covid. I experience severe bloating on a daily basis, for the past 4-5 months now, as a result of SIBO, which I was diagnosed with via a breath test. This SIBO is a very tricky condition. I don’t imagine that’s what you have, but I just thought I’d throw it out there.
 
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It’s interesting that the bloating started after you contracted Covid. That seems perplexing. I experience severe bloating on a daily basis, for the past 4-5 months now, as a result of SIBO, which I was diagnosed with. This SIBO is a very tricky condition. I don’t imagine that’s what you have, but I just thought I’d throw it out there.
Actually, I believe I am (and also, that I've always been) afflicted by SIBO. I suspect COVID-19 shutting down my digestive system entirely (2 weeks), merely exacerbated the condition. However, I've not had any G.I. doctoring since 2013, so I am uncertain. I've been waiting nearly a month to get a referral. Ugh.

Thx
 
Actually, I believe I am (and also, that I've always been) afflicted by SIBO. I suspect COVID-19 shutting down my digestive system entirely (2 weeks), merely exacerbated the condition. However, I've not had any G.I. doctoring since 2013, so I am uncertain. I've been waiting nearly a month to get a referral. Ugh.

Thx
That sounds very plausible. I’ll pass on any SIBO treatment info — which may not be of any use but I’ll do it anyway — to Sunshine and she can pass it on to you.
 
:hug: Sending gentle hugs your way, Howard, and a few thoughts...

Regarding water at night vs. formula... that's some EXCELLENT cognition there, friend. :) Too many people forget that our gut is basically a long muscle and like any muscle, it needs to rest and recoup to be its best. How about switching your nighttime water to an electrolyte solution with balanced Ca++ and Mg++ as a way to gently nourish your achy muscles without taxing your gut?

Regarding bloating... is there a good physical therapist at the facility who can teach you gentle body repositioning to aid in the normal passage of gut gas? (Then let it rip! :redface:) Gas is very happy to defy gravity, and it is oh-so-quick to move given a little 'higher' ground.

I think it's ridiculous that pharmaceuticals are considered before normalizing posture & position when it comes to issues like this. Movement (be it moving fingers, arms & legs; switching torso position every once in a while, doing whatever is needed so stuff can move properly through one's gut or even moving nonproductive thoughts on their way to make room for happier, healthier thoughts) is the key to homeostasis.
 
But this product has an added unfamiliar ingredient (to me): streptococcus thermophilus!

Maybe that's bad. So please, tell me if it is. This IS a need to know basis.
I keep forgetting to come back and say something about this. I believe Ken Lassessen says that bacteria is one of the more lactic acid producing/histamine producing bacteria.

https://cfsremission.com/2019/06/10/reducing-lactic-acid-producing-bacteria/ (That's maybe not the best page to discuss what I'm talking about but I get lost on his site--I think he said now he has over 1000 pages there--so I'll have to find a better one later and come back and append.) :D

Also the other thing I was going to ask you is if you had ever looked into Saccharomyces Boulardii? It is yeast based rather than bacteria based.

You would have research to find out what they culture it on, of course, but some people say it works better for them than standard probiotics for things like Candida or SIBO.

????

What I may wish to do is start with naturally fermented foods.
Just so you are aware, Ken Lassessen also talks about these producing more lactic acid and histamine too:

https://cfsremission.com/2015/09/21...uerkraut-is-not-good-for-you-if-you-have-cfs/

However, after being on abx (antibiotics) off and on for the last year or so, I find I'm able to tolerate natural ferment sauerkraut now. It has even helped me with some stomach issues I've been experiencing and no longer makes my sinuses plug up. :)
 
@Howard...fascinating post I somehow read.....

My whole stomach shut down , yet again , last Monday at 5 am. Severe gastroperesis. Oh well dental consultation, eight hours prior.

the idea you had- something about the daily digestive cycle probably matters here. I wonder if you can just somehow better try to follow a cycle - yet I entirely understand its taking 24 hours to get enough in, so this is an issue.

But to get thru healing that stoma, if its short term...if it can help....

I've got a really clear pattern going: DO NOT put even one bite of that in my mouth after Oh, 10:30 pm. All kinds of odd things can happen when I put in a random bite at a wrong time.

So when do the intestines rest, I wonder? Mine are very busy all night. I know that. In me my bowels would be doing something digestive all nite. But my stomach wouldn't 'still be going.

Intermittent fasting its called I think? So I seem to sort of have a 12 hour cycle.

I hope that you can continue to tease out a path forward.
 
So, I do not need any additional surgical procedures, I just need to rid myself of this excessive bloating.
from the chinese energetic perspective, this bloating is "wind".

and there might be something you could tolerate, that might help....its more dang experimenting.
 
I've not had any G.I. doctoring since 2013, so I am uncertain. I've been waiting nearly a month to get a referral. Ugh.
Have you been able to take stuff GI doctors demand we take in order to run tests?

Curious? I'm forgetting, the last time I think you were taking some barium or something.

I assume that single act might kill me. I'd never agree to the basic tests.

Are my fears valid? How do you examine all these body parts if the process makes us sicker?
 
Have you been able to take stuff GI doctors demand we take in order to run tests?

Curious? I'm forgetting, the last time I think you were taking some barium or something.

I assume that single act might kill me. I'd never agree to the basic tests.

Are my fears valid? How do you examine all these body parts if the process makes us sicker?

SO well said Rufous. I absolutely cannot do barium anymore and so many things. Its all such a mess.
 
It's 8am and the temperature is down to 75° in my room, that means it's time to turn the heat on full f***** blast!!!

Hooray for HEAT

How about switching your nighttime water to an electrolyte solution with balanced Ca++ and Mg++ as a way to gently nourish your achy muscles without taxing your gut?
Any particular electrolyte solution you are thinking of? I do poorly with sugar…

is there a good physical therapist at the facility who can teach you gentle body repositioning to aid in the normal passage of gut gas?
Great idea on asking the physical therapist(s) here. I've tried to engage them on several previous occasions, but since I do not officially receive physical therapy, it seems they aren't allowed to interact with me.

I do twist, turn, and stretch throughout the day… utilizing a particular yoga position (as well), but there likely exist additional better options. By sitting nearly upright at times, I have begun to burp (semi-regularly) for the first time .. since 2015 or so.


@Judee

I did go to the webpage links you provided, and there's a lot of information that's above and beyond anything I could ever hope to comprehend. Lol

I used to be able to understand much of what was being discussed on this forum, but now... I simply seek out words that look familiar... or cat videos! :)

Also @Cloudyskies .. thanks for sending me that additional G.I. related information (and conversational content). Fascinating, but I'm not intelligent enough to understand any of these things.


@Rufous McKinney

I'm sorry that you experienced another shutdown. The mystery of gastroparesis is a mystery.

But yes, I'm sticking to this grand plan of straight water overnight and then feeding formula during the daylight hours. Really, that's my only option at this juncture. I wish I could offer you recommendations or helpful advice for your situation.

Thanks everybody. :)
I guess my next objective is to figure out what it is that I am capable of figuring out.

And... scheduling another dentist appointment.
 
Any particular electrolyte solution you are thinking of? I do poorly with sugar…

Great idea on asking the physical therapist(s) here. I've tried to engage them on several previous occasions, but since I do not officially receive physical therapy, it seems they aren't allowed to interact with me.

I do twist, turn, and stretch throughout the day… utilizing a particular yoga position (as well), but there likely exist additional better options. By sitting nearly upright at times, I have begun to burp (semi-regularly) for the first time .. since 2015 or so.
Originally, I was thinking of lactated ringers solution with some Mg++ added, then I went on Amazon and searched for unflavored sugar-free electrolyte powder (most are flavored :(). This one has Mg++, but it would need Ca++ added:
https://www.amazon.com/Hydrolyte-El...9Y2xpY2tSZWRpcmVjdCZkb05vdExvZ0NsaWNrPXRydWU=

Regarding simple repositioning to move gas out of your guts, can you lie flat on your stomach for 5-10 minutes 2-3 times a day? If so, try doing it with a pillow or two under your hips. It's a super-easy way to raise your butt so any gas trapped within will move to "higher ground" to escape. :mischievous::whistle::mischievous:

If you can't lie on your stomach, you can do a variation of this while lying on your side.
 

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