Like a Knife Slowly Carving Into

4:57 in the morning and it burns. Burns like hell! And this keeps happening. Not all the time, but often enough. Often enough to prevent sleeping soundly through the night. Often enough to interfere with just about everything. But everyone's got problems. That's why we are all here. No, not on this planet, necessarily, but on this website. A place where we attain help in a variety of ways. Or, if not help, a sense of belonging.

I pushed the help button. Twisting to my right was uncomfortable, then again, everything is uncomfortable when you have an opening that feels as though it's on fire. Yes, my stoma. Hot raw bile pouring out across already tender skin. How does somebody stop this? How do I stop this from happening?

I know there's nothing anybody can do. Nobody is well-versed in this. It's a matter of fact, nobody is versed at all… much like this illness we share. So I work on solutions by myself. And in this instance, it's finding some way to immediately relieve the pain. It really hurts. This time.

First, I grab my old cell phone and turn on its flashlight, affixing it to the cell phone holder above my head. Then I start peeling off the 4 by 4 bandage. Two layers. Any agitation makes things worse. But this is something I must do. It's the same thing I did about two hours ago, and also, four out of the past five nights. But on the fourth night, there was sleep!

I was in this bad cycle about two months ago. Nine consecutive days and nights of this. And I was getting ready to do bad things, violent things, against inanimate objects. But I held on, I held tight. That's when one of the registry nurses found some stoma adhesive powder in the basement. The miracle cure! At least, temporarily. Until now.

There's always something. I'm almost out of the powder anyway. And the nurses don't know if they can order it for me again. Because… well fuck it, I don't want to get into that kind of shit right now. I'm in pain.

The first layer of bandage is dry. Which means, nothing. Second layer? Well, there is no second layer this time. I am using something called Optifoam. It's super absorbent. It's made out of polyurethane. Nurse Raleigh found some of it in the basement five days ago. And it was helping. It has helped. I think. Some of the time. Right now it's not.

It turns out bile isn't the problem, not necessarily. For whatever reason, my feeding tube is pushing in and out in rapid succession. Perhaps a sudden peristalsis event is to blame. But it seems the pain originates when it's pushing out, and pushing bile out along the edges and around the circle/rim. That seems to be the problem. So I re-secure the stoma, pinning it underneath a plastic spoon, plus two mouth moisturizer swabs taped together. Cotton tipped applicators are difficult to come by here, so I've had to improvise. Tape? Well, that's a difficult thing, too. And the most difficult thing of all? The plastic blue cap, the kind that secures to blood draw vials. I have one of those, only one of those, as an emergency means to plug my feeding tube whenever it's not in use. If not for that, I'd have to use my thumb. Literally. I'd have to put my thumb over the opening and just hold it there until… whenever. Infinity. A time frame in between those two.

Note: the normal attached means of capping my feeding tube broke off about six weeks ago

After more than 30 days, I finally did get the tape yesterday. Paper Tape. 2 inch. McKesson. A brand that sticks. Literally. And they also received some cotton tipped applicators. At long last.

This CNA finally showed up. I only had to wait 12 minutes, which isn't too bad, but when things are going wrong, help is needed right away.

I asked for towels and warm water. The goal was to pour the warm water over the wound area to rinse away the bile. But as time passes, I realize the bile isn't necessarily the primary problem. The pain is now subsiding. But I ask for those supplies anyway, in case something happens sometime in the immediate future.

Anyway, the sun is coming up, and I'm laying here just kind of not moving a whole bunch. And I'm talking into my phone, reporting this information to you and for your knowledge. Not exciting stuff, not at all. But I figure, since I can't sleep, I might as well be talking into my phone.

It's 5:19 a.m. now. And the pain is gone. Hooray for me. And hooray for you, because you don't have to read about my stupid pain event any longer, and perhaps not anytime soon.

And really I'm not looking for sympathy or empathy or whatever the proper term would be, I'm just describing what's been going on, based upon what's going on right now. Everybody has pain. Everybody's damaged or injured or something. I'm not looking for help. I get to visit with my neurogastroenterologist in August. I was scheduled for the end of July, but they just pushed my appointment back yesterday. My guy was going to be in surgery, so they had to rearrange me.

But again, there's nothing any of these doctors can do. Not for this problem. Not normal doctors. Perhaps a superhero doctor, but do any of those really exist?

Eh, this problem ain't never gonna crop up again. Or it may crop up again in two hours. Or in two weeks. I never know. Nobody ever knows. That's how problems work. They don't ask for permission.

I'm going to try to go back to sleep, before they wake me up an hour from now. And then after they wake me up I'm going to try to go outside and get my 20 minutes of direct sunlight. It's only going to be 99 degrees today. Although humidity is way the heck up. 30% chance of precipitation. Very unseasonable. I love it!

I've also been working on music, a little bit here and a little bit there. I have one song in the making. I think it's a song. It sounds like a song. So at least that's heading in a direction of some kind. I'm happy that I'm able to do this now. Make music. Again.

Overall I am mostly okay. It's just that the trouble I have sleeping bleeds into the daylight. Which bleeds into the next day, and the days succeeding. And with this illness, and without sleep… eh, I'll stop complaining.

Take care… and I'm sure I'll be back to write again soon.


PS - I just wrote this off the top of my head in real time so maybe this makes sense, maybe it doesn't.

My Set-up (in Technicolor Surround Unsound) - llllonnng story :)



Oh sweetie, that sounds .... really bad.

What happened to your healthcare advocate? If the staff, hwever wel-intentioned, can't keep you from being eaten alive by your own bile, if basic supplies like tape and stoma powder and cotton swabs are considered a rare luxury, you need someone to speak up on your behalf.

I now that it's much easier said than done. These are people you see every day , trying hard to do their best in a system that's seriously cracked, if not outright broken. There wont be much mystery about whose behalf your advocate is speaking on.

Maybe you could talk to one or two staff members that you hvae a decent relationship with, and express your appreciation for all that they do and try to do, and that you know that they'd be supplying you with all that stuff your condition needs if they only had it, but clearly there's some sort of hold-up in the supply chain. Sooooooo. Is there anything you can do to speed things along, sort of grease the wheels as it were., and kind of help them out? Help them help you? Because the pain, and its constant recurrence, is driving you nuts.

If they say, no, not really, that's just the way things are, that puts the ball in your court and anything you do to move things along wont come as a sort of nasty surprize or a slap in the face.

You probably can come up with something better, but I just thought I'd give things a little push.

There's no reason that you should be in that kind of despair-creating physical pain in a state-accredited and licensed institution whose purpose is to care for the ill and hurting.

Welcome to the best of all possible worlds, eh? I hope tings get better. You're doing so well and soooo much better, except for this hiccup ....:hug::hug:
Well, @Howard.....I checked out Optifoam bandages but there are many different sizes. What do you use? OK, the Q-tips are obvious enough but yes, cotton tips are far better for most things than the polyester/cotton combo.

What type of adhesive tape is best? Again, width. Please just answer the questions.....I know you weren't asking for things, but hey....take what help you can get You're gathering nuts for the winter...just go with it.

You have enough to deal with insofar as your pain alone goes. I would think the bile would burn, so warm water is always a handy thing to have on hand.

Get the name of the best acting adhesive your gastro guy knows of...and yes, chances are he'll have to ask his nurse. Point being that there may be something new on the market and hey, they may even have samples in the office and you can be wheeled away with a few of them. I think only the blood tech dept. can help with the caps....where did the one you're using come from?

It must be very exasperating for you (and the nursing staff) to have such a shortage of products. That's why you need your own stash, hidden away from

I can't put up a pretty picture like @Hufsamor did, but the wish for you to get away from it all is a good one. Imagine riding and gliding in a hot air balloon?....preferably out in the country. Feel better and hopefully you'll sleep tonight. Yours, Lenora.
Your stomach is a sad work of art and proof that this disease has made us into the world's greatest workaround pros. We each need to be awarded honorary PhDs in workaroundology.

So Dr Howard, I'm so sorry you're going through all that...again. :(

Can you call your doctor's office and give them a much needed update? Maybe they can move up your appointment again or fit you in somehow. (prayers)

Please do tell them especially about the tube moving in/out situation. That sounds scary (although if peristalsis is starting up again for you that would be something to rejoice about).

However, I still think they need to be made matter when your appointment is going to be. (prayers, prayer and more prayers)

Edit: Would bicarbonate (even topically) help to neutralize the bile acids or would that be a bad idea?
Hi Howard. Have you thought about joining a support group for this type of situation? People that have the same kind of set up as you do might have some good suggestions...........possibly?

I know you don't have much confidence in your upcoming appt. but here's hoping the Dr. can help in some way. Only wish it were sooner. Let them know about the supply problem.................maybe they will send you home with a shit ton of supplies.

Sending hugs.:hug:

What is your set up/feedtube called?

That's quite the artistic tape job you've got going there! But hey if I were in your situation...........I'd be doing anything I could also to help get some relief. I think the Dr. should see the lengths that you go through. (shouldn't even be your job). Maybe he/she will make special orders for someone who is experienced to take better care of the site. One can wish.
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I think the Dr. should see the lengths that you go through. (shouldn't even be your job).
And again, I TOTALLY agree ...
Maybe he/she will make special orders for someone who is experienced to take better care of the site.
Sadly, as @Howard stated, there doesn't seem to be anyone there who knows ANYTHING about his feeding tube. Not really how to install it, clean it, replace it, keep liquid nutrition running thru it. It's ....baffling. And upsettting.

And I'm in a really shit mood and a protracted moderate downturn, so I should probably shut up now ... I'll see myself out :xeyes::xeyes::xeyes: ..... :thumbsup::hug::hug:
Thanks. As of yesterday I do have supplies (took 30 days to get them), but ... I am running through them a fair amount faster than I had previously, due to the complications (from my G.I. devolving) post COVID-19.

The nurses will spend money out of their own pockets to help me (supplies), but I'm trying to avoid that. And that's also why I'm trying not to force the issue. The nurses are the ones who feel the pressure as a direct result of their own patient(s) not being properly supplied (at least in my case).

And yes, I did join a support group, but again, jejunostomy tubes aren't all that common. And I do utilize their suggestions. I've been learning from these people ever since I got my feeding tube placed in 2019.

But as mentioned, there aren't any professionals available to confer with here, or even in the hospital, and then also, including my own visiting physician. These people admit that I know more than they do, and defer to my decision making. But what I need is some combination of wound care specialist/gastrointestinal specialist with a degree in anti-bloat, but also understanding the mechanics of why this is happening. Which I understand (not fully, though), and "they" typically won't listen to -

What a gastroenterologist will suggest is that I get a wider tube... which would temporarily stem the leaking. But yes, that's only a temporary fix, as once again, due to my intestinal pressure from within, my stoma will just as soon start leaking copious amounts of bile as soon as the break-in period ends. Plus, a wider tube also takes up more space when lining the inner jejunum (small intestine)... creating additional difficulties in regards to food passage (at least, theoretically).

Anyway, it seems as though I cycle in and out of the burning bile problem. What helps most is if I do not eat orally. At all. Because whenever I ingest food, within 20 minutes...

Well anyway, thanks.

Sometimes I become angry, and frustrated, and I feel defeated. I know that everyone feels this way from time to time. I mean, this feeding tube saved my life, as many of you will remember and recall. I am grateful. It's just that the easiest part of the equation would seem to be attaining supplies, items that are most likely covered by insurance. I mean heck, they're saving money on me in the first place, seeing as I don't eat the three square meals a day everyone else eats. :)

Good idea, I shall involve my medical advocate once she's feeling better.

And I do appreciate the suggestions, as they help me outline my future objectives. Sometimes it's difficult to determine if I'm being reasonable or not.
Sometimes I become angry, and frustrated, and I feel defeated. I know that everyone feels this way from time to time.
You have any good reasons to. You're dealing with hellish problems, and doing it with as much courage as anyone could bring to these dilemmas ....

Don't let this drag you down any more than necessary. The progress you've made is remarkable, and there's more ahead of you. I honestly believe that you'll eventually resolve the issues, and walk out of there, and into a new and more rewardng life, a free man.
Good idea, I shall involve my medical advocate once she's feeling better.
I think that if you alert her to your concerns about not offending the stalwart nursing staff, many of whom are willing to go out-of-pocket to make sure that you get at least some of what you need, she'll know a way to deal with this that avoids that.
Someone offered to pay for a few of my most needed supplies (stoma powder, tape, and cotton-tipped applicators), so I shall be in good shape for some time (and soon) :)

In any case, today's been a better day overall. Plus, I'm outside right now at 8:30 p.m., and it's a relatively cool 90° Fahrenheit. Can't beat that temperature in late June.

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