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30- Days In / Inn - A Status Update: Internal Combustion / Uneasy Interiors

Responses to comments from previous blog entry ---

Hey y'all ... appreciate the suggestions.

My doctor told me to go to the hospital tonight, but really, there's no sense in doing so (right now). I am basing this upon my urine color (yellow / straw), and upon the fact that I felt decent over the weekend when I had a 36-hour reprieve from diarrhea... allowing me to move around a little bit.

Combined with the feeding formula (about 1000 calories per day), plus oral sustenance (applesauce, egg white, white rice, watermelon juice, blueberry juice, gummy bears), I am taking in about 1500 calories. So I'm not losing any more weight at this time.

I am also getting 1.2 liters of water per day, which is quit enough.

I think what's hindering me most is the lack of vitamin absorption / bad gut flora, and the lack of sunlight exposure.

Origins

All of this began because I took Milk of Magnesia around October 1st, then had progressively loosening stools after the fact - until a month later, the bouts of diarrhea began.

It's likely the Milk of Magnesia wiped out my intestinal flora, while also unblocking my colon - so now this high fiber feeding formula is going right through me. At least, that's what I think is going on. Test results do not indicate anything in particular. And doctor's (and their ilk) never know anything, in regards to my past and current physical condition(s)... basically, I've got to solve everything myself without assistance (besides suggestions from Phoenix Rising, etc. and so forth).

Luckily I understand things and am able to deduce based upon baselines, history, and happenstance. Perhaps I require black magic, or divine intervention!

It's just that nothing is working, besides fasting.

Probiotics, sour kraut, nor Imodium seem to be helping all that much.

They (someone) is working on changing the formula back to the old one. Maybe that helps. Less fiber. Perhaps a key ingredient is causing intestinal upset (with the Liquid Hope).

In any case, I've been worse than this. And the hospital people wouldn't even give me an IV, much less anything else. They'd simply recommend I visit with my G.I. (who won't, or cannot, do anything in particular to alleviate my suffering).

I think I'm going to do a large(ish) amount of codeine this evening, in order to slow down the intestinal processing. Not too large, just more than I would usually take. There are schools of thought that support this type of action.


Thanks ... and I'll let you know if anything comes to a head.
Howard


P.S. the garage living is okay (comfortable and warm), no SSI yet (of course not), my case manager is absent / not helping resolve issues

Comments

Checking in here......

I"m grateful you've been given the intellectual capacity to work through your various issues and find solutions and keep trying and keep at it.

Your diet sounds more diversified.

I'll be making sure Milk of Magnesia is not around here anyplace....
 
Glad the garage is comfortable and warm at least.

Wish you had access to a yard/garden where you could get some much needed sun every day. Maybe when the SSI finally comes through....

Yup, hospitals and most doctors often not at all helpful unless the problem is instantly obvious.

I wonder if the Milk of Magnesia and resulting issues have triggered a sensitivity to the fibre in your formula.

Leafblower h*ll here at the moment, I know you hate them too....hope you don't have that racket to contend with whilst in the garage! I often feel like ripping the things out of the offender's hands and turning it on them instead :huh:
 
My next question was going to be about your urine color. I'm glad that's ok.

Just for clarification. You mentioned test results do not show anything particular. Did tests include stool test?

Yeah, I am super hydrated and effectively / emphatically emptying all day long. Ha! Almost completely clear today, so I am dialing back a little bit on the feeding tube fluids.

Stool sample and everything else came back clean / unremarkable... which is actually quite remarkable, considering how ill I have been!

@Rufous McKinney

Yeah, assuming I am correct about this whole matter, never knew Milk of Magnesia could be so damaging to gut flora (for someone who is dependent upon everything lining up, in order to function semi-properly).
 
Wish you had access to a yard/garden where you could get some much needed sun every day. Maybe when the SSI finally comes through....
Yeah, at least I don't have to travel too far (when I am able). And (double) yeah, when SSI is ... underway or whatever it is they are doing right now.

Leafblower h*ll here at the moment
Argh yes, really loud leaf blowers here from garage level, however, I'm not nearly as sound sensitive as I used to be.
 
Did you have at least one visitor over Thanksgiving? Do you play chess or any other games? It would be nice to make some social interactions and that's one way. (OK, poker even?)

Nope, no visitors. I just hung out here and quietly worked on some music. I have plenty of experience going without any social interactions, so in the least, I'll appreciate the interacting once I fix myself.

I'm wondering if you could take some liquid Pepto-Bismol or the like.

Yeah, the may be next on my agenda. Imodium is supposed to be more effective, but I require solutions beyond what I am currently doing.

Will you see your mother over Xmas? Could she take an Uber to visit you, although seeing her son in a garage may not be what she had in mind. Your sisters?

If I can fix this issue someday I'll go see her. But she's too confused (and frail) to travel anywhere by herself. She's hoping my sisters visit her, but that's a long shot. Distance.
 
Maybe research activated charcoal caps. Only take a small amount if you do try them though as too much can cause blockages. Also don't take near meals or other nutrients you want to absorb because they would bind with pretty much everything.

Also these digestive enzymes also used to help with the type of issues you're having but they've changed the formula since the last time I bought them. Now they have milk and sulfites. Before it was milk and soy.

They did work though at slowing things down (just that brand). However, maybe you could find another brand with acceptable ingredients that have the same enzymes and in those amounts. ???

And again, only small amounts (like a quarter of a tablet) as the enzymes, like the charcoal, are very effective too.

I'm not recommending taking those together either, just one or the other. And research everything before you buy. I don't want anything to make the situation worse.

I kinda wish you would go and get a CT scan though to make sure you don't have something going on before trying anything suggested.
 
You said above "They'd simply recommend I visit with my G.I. who won't, or cannot, do anything in particular to alleviate my suffering"

What actual tests/investigations have you had done to date @Howard ?

Did your gastroenterlogist do a barium meal, manometry and other motility tests, endoscopy, CT or MRI scans or some, all or none of the above?

Do you still have the vitamin D lamp you mentioned while you are stuck mostly in the garage? Not sure if you would be able to use it in there....
 
Also these digestive enzymes also used to help with the type of issues you're having but they've changed the formula since the last time I bought them. Now they have milk and sulfites. Before it was milk and soy.
Thanks, I'll investigate further. The last (and only) time I tried digestive enzymes I nearly had to go to ER due to the extreme lower abdominal pain. Crazy bad stuff... but that was five years ago.

I'll check into the activated charcoal, too. No history there! :)

Did your gastroenterlogist do a barium meal, manometry and other motility tests, endoscopy, CT or MRI scans or some, all or none of the above?

Do you still have the vitamin D lamp you mentioned while you are stuck mostly in the garage? Not sure if you would be able to use it in there....
I've not had a G.I. do any tests on me since maybe, 2019 - when I had my feeding tube placed. The hospital has done a number of CT scans and MRI's of my abdominal cavity, as I typically receive at least two each calendar year.

Great idea on the Vitamin D lamp - it would require several hours of searching through a storage unit, but maybe someone can do that for me. I went outdoors for 30 minutes yesterday and have yet to recover, so yeah...


otherwise

Right now I am stopping all formula feeding until I either get my old formula back, or .... ???

I need to call my doctor's office again this week - they are probably considering dropping me, due to my neediness. Please, just send (or approve) the damn stuff already!

I've been able to tolerate 3 eggs (18 grams protein) and 6oz rice (4grams protein) today without much pain, so that's my diet, going forward. Plus, 6oz applesauce.



Note: despite my repeated fluid loss, my urine is nearly clear, which means I'm not in imminent danger of perishing, so hooray for hydration!
 
Hi @Howard.....Do you see any progress, apart from hydration? Does someone check on you daily?

I'm sure the excitement of the move from the nursing home to freedom affected your entire system. However, you may just have to have some tests done....like it or not.

We're very hard patients to treat and I know you understand that point. Yes, we can get frustrated and mad at our doctors...but there is so little that can be done, apart from treating one symptom after the other.

Yes, the charcoal works, but you do have to be extremely careful with it.

How are you keeping yourself occupied? Just taking care of bodily needs probably falls into that category.

I hope you'll be able to get back on your old formula....and I especially hope that it will be an easy transition. Why was it changed?

Your sisters can't visit you or your mother for Xmas. When do they visit? Neither of you seems demanding, but then I understand that families have their own ways of behaving. Maybe you'll have a Xmas surprise. I hope so. Yours, Lenora
 
Yay for getting out for half an hour :thumbsup: Hope you can manage to get out a bit more often again soon. I really miss hearing about your trips out and the people you meet and your thoughts about all kinds of things....

I still don't understand why you haven't had any gut motility tests and others I mentioned above - how can they fit you with a feeding tube because you have such bad GI issues yet not thoroughly investigate as to what is causing those issues?

It is disgusting that you have been left to pretty much fend for yourself by the medical profession. If they could do the relevant thorough testing and investigations, it's even possible they could find a drug or combination of drugs that would alleviate the problems significantly......and isn't this necessary for you to make any real progress towards recovery of your health?

Hope I haven't said too much.....just concerned, will shut up now! :nerd:
 

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