Mystery: Sudden Worsening P.E.M. - becoming desperate

Howard

suffering ceases when craving is removed
Messages
1,296
Likes
8,012
Location
Arizona
Is there anything I can do to curb my sudden debilitating P.E.M.?

In the past two weeks my P.E.M. has gotten substantially worse, to the extent that I feel the end may be near. Normally I have a rather positive outlook on life, but I just cannot describe how awful, how physically drained, nor how sleepy I've become after physical exertion.

Please note, I've been bed-bound for the past 6 years, and I've never felt quite this badly after muscle exertion

On any given day (20 minutes after having had a bowel movement), the P.E.M. hits hard. Before, the duration of my feeling unwell was between thirty minutes to an hour. Now, I am virtually immobile for up to 12 hours.

I feel nauseous, poisoned, a near constant muscle burn, occasional numbness in my lower extremities, and even have difficulty staying awake.

What's Changed

Carbs

For the past two months I've been sucking on a few gluten-free salsa flavored rice chips each day.. in order to merely "taste" real food. I do not actually swallow the chips (carbs typically destroyed me when I was still able to ingest food orally, causing overall weakness, sweating, and confusion).

Please note, I've had no actual food since February.. severe gastroparesis, but I do have a feeding tube.

Bedsore

I may or may not have a bedsore on my tailbone area. I've been waiting three weeks for a nurse to come out for a visit, and "nobody" keeps showing up. I've been applying turmeric paste to the area, and the wound seems to have closed up, but I cannot lay on my back side due to the pain. Feels something akin to internal bruising.

Bloating

In the past 24-hours, my upper left flank has become very sensitive to the touch, and bloating worsens this discomfort and pain. The area where it hurts most is adjacent to my feeding tube stoma.

Also, coinciding with this sudden downturn, I've been extremely bloated for the past 2 weeks. This is not normal for me. Probiotics seemed to have remedy this problem long ago. And ginger powder used to help as well, but nothing is working on that front right now.

Feeding Tube

It's also possible that I have bacterial or fungal issues with my feeding tube, as the odor emitted from it (upon opening) doesn't smell quite right. I am overdue for a feeding tube replacement.

Hospital

If I go to the hospital, they will likely do nothing. The added problem is that transport exhausts me (they must carry me down difficult stairs wrapped in a tarp) to the extent that I cannot properly communicate with paramedics or hospital personnel until I regain my energy, which can take several hours.

I also do not have a warm body to take with me to the hospital, someone to advocate for me. I tend to get treated rather poorly when I come in on my own (several times, having been neglected and abused by staff - physically and verbally - over the years).

Question

Is there anything I can do to curb the sudden debilitating P.E.M.?

I suspect there is not, but I have to ask. It seems as though something snapped, or something broke, or something was pushed just a little bit too far.

Up until today, I did not have a bowel movement for three days consecutively, and I started improving, feeling better energy overall. Obviously, I cannot avoid bowel movements. But right now, I am slightly out of breath, my muscles ache, and things just aren't very good at all.

Question #2

If anyone were to triage this, come up with a prioritized plan based upon my disclosure, which areas would you focus on first.. and how so?

I don't know if (or when) I'll be able to respond to any comments, but they will be read and they will be appreciated.


Thanks,
Howard
 
Messages
5,328
Likes
12,679
Location
South east England
The area where it hurts most is adjacent to my feeding tube stoma.
It's also possible that I have bacterial or fungal issues with my feeding tube, as the odor emitted from it (upon opening) doesn't smell quite right. I am overdue for a feeding tube replacement.
An infection is possible @Howard and needs to be checked as soon as possible. Sounds like the kidney area. Like I say you need to get this checked soon as possible. Could you get a Doc or Paramedic to visit?
 

Judee

Senior Member
Messages
2,531
Likes
7,082
Location
Great Lakes
Oh, @Howard. I don't know.

Do you feel like something's going on with the feeding tube? That would be my first concern.

Could you have developed an allergy to something in the feeding tube formula?

I re-tested an allergy food a few days ago and it made me crash badly even still into today.

Did you say a little while ago that you started to add the cherry powder back in?

For some reason melatonin (even from cherry juice) seems cumulative in my system. I can't do two days in a row or the grogginess gets worse each progressive day.

Praying.
 

Judee

Senior Member
Messages
2,531
Likes
7,082
Location
Great Lakes
If you do have to go to the hospital, could you put everything on your phone now and just hand it to them later when you cannot talk? Even noting that the transport makes talking even harder.

I just looked for patient advocates in Arizona. Most of the websites I'm finding are from nurses who advocate for you but they do charge a fee and it looks like most of the time that is not covered by insurance. :(

Also I checked with a volunteer advocacy organization but they only do phone support and I not sure it would be the kind of support you need for advocacy.

The person I spoke to did suggest that you could check with your insurance to see if they have an advocacy program or agency that would offer services like that that could be covered by your insurance.

(This is all for if you did have to go to the hospital again.)

:(

Praying.
 

Judee

Senior Member
Messages
2,531
Likes
7,082
Location
Great Lakes

Judee

Senior Member
Messages
2,531
Likes
7,082
Location
Great Lakes
Also did you say on your last visit to the hospital or the previous that one of the doctors was helpful--I think it was the gastroenterologist? Can you call his office to see what he would advise?
 
Last edited:
Messages
8,149
Likes
20,400
Would it be possible for your Preferred Caregiver to somehow serve one day as an advocate for you to get in to get the Jtube checked out (which it sounds like you really need to do).

Could that Service help arrange something...? Maybe shift her schedule a bit for the others and get a day for you?

I think that was a good idea Judee suggested, to have a little sort of summary of WHATs up with hOWARD that you can literally- well just pass over the phone to them....or a piece of printed paper.

The caregiver then could serve to- Protect Howard from Being Overwhelmed. Or key into some of the issues that need special treatment.

Personally, in my starrring episode of ER, i was really wiped out by the lights, the machinery, the ongoing blood pressure cuff was a serious problem for me, plus the IV was also awful, and being put into the wrong positions, and convulsions. It was pretty awful there. The nurses vibe was upsetting (must want painkillers). The callous attitudes.
 
Messages
13,148
Likes
30,147
Location
Second star to the right ...
@Howard
This is deeply disturbng ....

I agree with @Judee .... you need to talk to your LPW, and she needs to know that you feel like you're dying or very close to it. Like Judee said, I know you don;t want to impose on her already considerable load, but making funeral and memorial service arrangements is even worse.... add the emotional pain and loss and the regret and self-recrimination she'd go thru, and the equation's solution is pretty obvious .... at least I think it is, YMMV ....

I hand-held you thru a full 4 or 5 days of one of your hospitalizations, and I remember pretty vividly what you went thru. In spite of that, and because I agree with other posters here, I think you need to establish what's going on with your feeding tube.


I know it's been accidentally yanked out completely a couple of times, and there have been several instances where it just came loose on its own. All-in-all, and knowing that this is fairly unsolicited input, I'm urging you to follow thru on a close examination of ....1) the feeding tube stoma ..... 2) The feeding tube itself, which is an ideal breeding ground for bacteria, funghi, and other unwelcome guests .... 3) Basic blood work in order to determine the presence of a deep infection, as @andyguitar mentioned, possibly in the kidneys or liver.

Please keep posting here and let us know what's happening, yes? Doesn't have to be long, just brief updates, three to five words should do it.

I'm really concerned Howard ....
 

Howard

suffering ceases when craving is removed
Messages
1,296
Likes
8,012
Location
Arizona
Pain and other symptoms diminishing - meditative muscle relaxation focus

@andyguitar

Yes, infection may be possible. I'm thinking more of a fungal infection (if anything). I'll try to schedule for a tube replacement procedure. I'm wondering if a clean tube would help clear things up.


@Judee

They do have a Companion program here, but I've been waiting several weeks for them to process me. It would be someone who could go to the doctor or hospital with me. Insurance would cover it. I'm around North Phoenix.

My current caregiver just advised she's available to accompany me tomorrow afternoon (or Wednesday) if I need to go to the hospital (she lost her other client). Yes, writing out my suspicions and concerns, or having the details on my phone is a great idea.


Revisiting oxalates. Just began taking vitamin C tablets in the past couple of weeks. I am prone to kidney stones, and my diet used to be very high in oxalate content (especially spinach). I'm wondering if the byproduct of oxalates (the crystals), are being released into my bloodstream after exertion (or depriving my muscles of oxygen). Keep in mind, I do not necessarily know what I'm talking about here. Past oxalate investigation...

But my recent (months ago) diet consisted of lots of spinach, quinoa, and other oxalate-rich foods. Nothing I can do about that now, in this moment.

I'm just trying to think of what's changed in the past few weeks that may have wrecked me.

Thanks. Will call the hospital and see if I can schedule.

My doctor's office said it would be 7 to 14 days before a nurse would be sent out to visit me. That's rather inefficient. After I put up a fuss, they said they would expedite my case.


Appreciate the support. I'm not particularly good at multitasking. LOL


H
 
Messages
8,149
Likes
20,400
es, writing out my suspicions and concerns, or having the details on my phone is a great idea.
bullets.....and then you can just...oh POINT.......to a list with J TUBE , tail bone

List what makes the visit harder for you: maybe they could be more thoughtful.


RE: tailbone sensitivity- I've had issues with this- just because in my case I sit alot, it can get sore and feel bruised. And I did think my Oaxacan horrible mattress was close to giving me bed sores.
 

Howard

suffering ceases when craving is removed
Messages
1,296
Likes
8,012
Location
Arizona
any chance the tart cherry juice might be freeing oxalates a bit like: cranberry juice?

Oh my husband went on a cranberry juice kick, and then had a serious problem ....afterwards.
Hmmm... if that's something that actually happens, it actually makes sense. I recently started utilizing tart cherry powder in my formula night AND day. And I've been having an odd nervous reaction to it in the past couple of weeks.. extremely restless and fidgety. Something similar to a low blood sugar reaction.

Typically, it's the only thing that allows me to attain restful sleep. But that's not been working, (of course) of late.
 
Messages
13,148
Likes
30,147
Location
Second star to the right ...
I recently started utilizing tart cherry powder in my formula night AND day. And I've been having an odd nervous reaction to it in the past couple of weeks.. extremely restless and fidgety.
Tart cherry juice stimulates the release of GABA. Generally speaking, that could produce a counter-reaction, stimulating an increased release of the excitotoxic glutamate .... which could produce, nervous, fidgety restlessness ...
 

Zebra

Senior Member
Messages
491
Likes
1,975
Location
Northern California
@Howard

I am concerned about you. You rarely complain or ask for help, so I realize you must be feeling quite ill.

I want to weigh in on the tail bone pain, which you previously described on a different thread as a suspected "bedsore."

I am wondering if you have developed an infectious condition in that area called a pilonidal cyst.

Please don't believe what you read online about pilonidal cysts. I don't fit the phenotype of someone who would develop this condition, and yet I did, completely out of the blue, in 2019 (twice).

The tail bone pain was severe enough to cause me to seek urgent care. The doctor listened to my description of symptoms and examined the area. Because it was hard for me to see, I had no idea there was a red, raw, oozy area right on top of my tailbone. The doctor surmised that a pilonidal cyst had ruptured and left an open abscess where I couldn't easily see it. I had zero idea what was going on "back there" aside from the pain that interfered with sitting and laying down.

The treatment definitely involves broad spectrum antibiotics, especially if the skin has been broken. As you may know, an infection that's breached the skin barrier (cellulitis), can become quite dangerous.

This *could* be contributing to how bad you are feeling.

A general physician should be able to diagnose this by visual inspection and a brief synopsis of your symptoms. Because my cyst had already burst, we were unable to perform a culture, but it's likely Staph.

In my case, after the skin began to heal from the infection, a dermal sinus tract revealed itself, which is actually a small hole in the skin that allows for an infected pocket of puss and inflammation to gather deep underneath the skin and press against the tailbone. Sometimes this type of infection needs to be excised, but they would wait until infection is treated and inflammation is reduced/resolved.

Please consider getting your tailbone pain and bedsore checked out. It *could* be the source of an occult, and dangerous, infection.

Please let me know if you have any questions about what I wrote. I wish I could help you more, Howard!

Z
 

Howard

suffering ceases when craving is removed
Messages
1,296
Likes
8,012
Location
Arizona
@Zebra

Appreciate the information. Sorry to get graphic, but the raw oozing sore/opening closed up three weeks ago after I applied turmeric paste for several consecutive days. Then five days later, the pain came back, but it no longer appears to be "open" down there. For the past two weeks the pain has been consistently worsening, but still bearable.

I'm trying really hard to get someone to see me tomorrow.. probably end up being transported to the ER though..

Too many things are not right.. including left flank discomfort etc. Maybe insist they replace my feeding tube, then check the tailbone area. Bloodwork, too.

Thanks,
H
 

Zebra

Senior Member
Messages
491
Likes
1,975
Location
Northern California
@Howard

I'm so sorry that this is happening to you. I know (from your other thread) how incredibly difficult it is for you to leave the house to seek medical care. And we all know that a trip to the ER is gonna SUCK on many levels.

As you mentioned the original sore seems to have healed, but the tailbone pain remains, the standard of care is an (awkward!) ultrasound of the area to see if you might have a "tract" deep underneath the skin containing a pocket of puss and debris. I've also had an MRI of the pelvis to ensure such an infection had not invaded the tailbone itself.

Of course, I'm regaling you with *worst case scenarios*, but if you are likely going to be at the hospital long enough for a feeding tube replacement, it's probably worth while to have them check out your caboose! :)

They may try to brush off your tailbone pain and diagnose you with "coccydynia" (inflammation of the tailbone), but I think the presence of a "bedsore" in the exact same area raises suspicion for a cyst and/or infection.

I'm sending you my very best wishes, Howard. Please keep us posted, as you are able.