I thought the ALS board might be the best place to inquire about this since I didn't see anything more appropriate when scanning the list of various boards, and I know lots of ALS patients end up getting the PEG tube for nutrition when swallowing becomes a problem. In my mother's case, her food and water intake declined dangerously due to dementia following a head injury (her brain is apparently not receiving the hunger/thirst signals) and, after several trips to the ER for dehydration, we went the tube route! She is 93 1/2, but wants to continue living and I, her daughter, support her fully!
She's home now (living with me) after several hospitalizations and awful stints in "rehab," and we're both very happy with the arrangement, but in the last week or two, she's developed seriously problems with diarrhea. The tube installation went well, and for the first three months, no problem; had to fidgit a little with various formulas and fiber to "firm up" the loose stools, but we seemed to hit on a winning combination of Jevity 1.2 (4 cans/day), 700 ml. free water (she's fluid-restricted due to CHF), and 6 tsps. soluable fiber (the Benefiber type that dissolves fully in water). I administer one bolus (1 can) before leaving for work, then leave her with a caregiver and an 8-hour supply of the other three cans via a pump set at 135 ml/hr. All went well...
She had ALWAYS had episodes of diarrhea, but that is lately -- again, in the last week or two -- out of control; in addition, she complains of nausea, pain and discomfort in her stomach, cramps, and I also notice that the tube itself seems much shorter than it used to be. We had quite an excessive; not, now.
I'm very worried that the tube has "migrated inward" (from what I can glean from researching on the web, not being a medical professional myself), but the in-home health service seems to be pooh-poohing this, instead suggesting more fiber, less fiber, adding Florastor (which, to my understanding, is for bacterial-related upsets following antibiotic therapy, of which my mother has had none), and denying that there's an issue with the tub. I DO check for residual and ausculate with a stethoscope, but I'm not very good at it; sometimes I hear something and something I don't, and I'm not sure what to make of the residuals. She does exhibit a green discharge around the stoma, but - again - home health doesn't seem very concerned as long as she doesn't run a fever, which she isn't.
The diarrhea is becoming very problematic, not only as far my mother's health and well-being is concerned, but from a caregiving standpoint (Mom needs full assistance with ADL, including toileting, and it often gushes out to the point where there's a real mess to clean up, which is also demoralizing to her).
When I mentioned that she may need an x-ray to determine correct placement of the "ball" against the wall of the stomach, their reply was that this couldn't be done on an outpatient basis, for some reason (they do bring in equipment for chest x-rays, etc.); I'm like, OKAY, but do we need it?
How would I know if indeed there's a placement problem here? Please help!
As a long term care nurse who deals with feeding tubes regularly, The discharge around the stoma needs to be cultured. She may need an antibiotic for that. The possible migrating tube sounds like something she should be seen by her doctor for. There is usually a reason for diarrhea. You said she has not been on antibiotics, but it sounds like possible Cdiff. Her stool should be cultured as well. Good luck, as it can be very challenging.
Thanks for the reply! I'm having a hard time figuring out where to post questions about this. As for the stoma, the visiting nurse thinks it looks GREAT; she says some discharge is normal and to just keep it clean. There's no redness, inflammation, swelling, or fever. She's currently getting three cans of Jevity 1.2 and one can of Jevity 1.5 per day; just yesterday, I decided to try eliminating the 1.5 and substituting another 1.2, just because I'm trying everything I can think of (this is a science experiment)... So far, so good! She hasn't had a single episode of diarrhea in about 36 hours, whereas it was a daily occurance before (often going 2-3 times in a half hour). Could it be as simple as that? Other questions: can you use the same bag (Patrol pump) for 24 hours? I had been told to change it out every 8. Also, can you run a bag of forumla for as long as 12 hours? Again, I've been given conflicting answers. It's my understanding the the slower the rate of infusion, the more easily it's absorbed and with less trauma to the GI tract, so the 24-hour closed system seems logical to me. As for doing six bolus feeds a day (including water) with natural food, that just isn't going to be a feasible routine!
We don't usually do bolus feeding in LTC, but typically the slower you give the feeding, the better it is tolerated. We usually run them on a pump for 22 hours a day at a rate of 60-90 ml/hr. Our dietitians get involved on dosing. We change our tubing every time we hang a new bottle (approx 24 hours). Without seeing your system, it is hard to know specifics.
It's a Patrol pump; I finally got around to reading the instructions on the hanging bag's packaging and, sure enough, it says to change every 24 hours. NOW my question is how much formula I can put in the bag at one time; how long can THAT sit out unrefrigerated? I would have no problem doing two cans in a twelve-hour period (with the meds/free water in between), but would it be better to switch to a full-fledged 24-hour closed system which uses the jug forumla? I understand you can do the meds/free water without unplugging the feeding that way. It'd be nice if these home health people were more help, but -- after three months of doing this -- I remain pretty confused!
I am all for a closed system, but I believe home health care usually prefers bolus feedings with cans, etc. I would only run one can at a time. It makes sense to leave a can sealed until you need it. The latest pumps (ours were Kangaroo) had the water flushes done automatically, with water in a second bag. That insures that the correct amount of water is always being given. The entire setup was changed when each bottle was empty...the bottle, tubing and water bag. Great system!
Confused; why it is okay to have a whole gallon (or whatever that jug holds) hanging out for 24 hours, but not a bag containing what I assume is the SAME formula; simply because it IS a closed system? It seems that being unrefrigerated would be the problem, and that would apply equally to both methods.
Well, for some reason, they want me to continue using the bags and cans instead of an alternative (at least they're no longer expecting me to plan, cook, blenderize, and bolus-feed six meals a day)! The problem with even the bags/can, however, is that I work -- almost, now, back to -- full-time and thus am gone for seven hours at a time; obviously I can't give water via the tube when I'm not there! Likewise, I have to pour in 2 cans at a time to last that long, and -- on those rare occasions on a weekend when I try to maintain some kind of life of my own and am gone all day, I'd have to pour in three cans and go without water all that time...
The "aides" I hire to stay with her when I'm gone, as I've mentioned before, aren't qualified or credentialed to fool with the systems, so it's all up to me. These home health people seem to think the family just sits around the house all day eating bon-bons; I wish I could but, unfortunately, I must try to keep my own life going, too! The 24-hour closed system with water seems ideal to me, and I'm not sure why I can't persuade them of this.
At any rate, they DID instruct me to stick to ONE form of the Jevity (I was mixing 1.2 and 1.5), to slow the rate to 40 over 24 hours (claiming I can use one bag for this), and to eliminate the "benefiber," as that was likely making her diarrhea worse (the hospital/rehab started this).
Also, since she has Stage 3 kidney failure, should she even BE on the Jevity? Again, this was the rehab's dietician's prescription, but shouldn't she instead be on Nepro or Suplena, which are specifically designed for renal failure patients?
Thanks again for the help; I really don't know where to turn for answers! At the time she got the tube, I asked the GI surgeon some questions, and he referred me to her GP. Her GP referred me back to HIM, because the GP really doesn't know much about this!
UPDATE: since scaling back the infusion rate to 44 over a 24-hour period (continuous flow), the diarrhea has completely abated; Mom is now having very normal stools -- if anything, almost a little TOO solid -- once every two days or so. So far no straining, but I'm keeping stool softener on hand just in case. Never thought I'd need that again...