Feeding Tube

[JohnnyMags]

Here's a subject I've seen mentioned many times ... Feeding Tube. All I picture is a tube leading under your skin and being tucked away out of sight. I know it's not that simple and until my wife's recent problem eating I wasn't interested in this subject. Now that it is looming could someone explain the process of having the tube installed and what it's like living with this feeding tube. Does it effect the little social life one may have? Finally what are the negatives of living with a feeding tube?

 

[ahl39]

It does not have to be a tube. You can get a mic-key button which is super low profile and is just like a button that lays on top of the skin.

Having it installed is a surgical procedure under anesthesia. But it's literally one of the fastest surgeries out there, in and out in less than 30 min. It can be exchanged outpatient in clinic or even by yourself.

It does require minimal daily maintance such as cleaning, putting silver nitrite around the wound to encourage healing, etc but otherwise nothing major.

Should not affect social life. You won't see it under clothes.

Negatives, sometime it can leak if balloon is under inflated, be painful if balloon overinflated. There can be some pain initially from having it. If you have the tube instead of the mickey, it would require a belt or something to attach to body. (There are pros and cons to the tube vs the button).

 

[Nikki J]

Even if she gets a tube it isn’t obvious unless she wears form fitting clothing. My sister planned to switch to a button but never did as she found the tube perfectly tolerable and we attached the tube to the inside of her shirt. I think the only people outside of the family and medical who knew she had it were tsa agents who she had to tell
The surgery is easiest if done when it is first suggested by her doctor

 

[JohnnyMags]

Thank you all this is relatively good news ... not the fact she might need it but the fact it isn't more stuff that is uncomfortable. Here is another question if she has the feeding tube done and the nausea is fixed can she still eat trough her mouth? Another words have two sources of eating (not that tube feeding is actually eating). The main thing that matters right now is this unbearable nausea. As I mentioned we have an endoscopy this Tuesday and I was thinking if that shows nothing what if I took her to the emergency room forcing them to treat the nausea rather than trying things then waiting. Plus once admitted they can also deal with her need for nutrition.

 

[Nikki J]

Yes. The feeding tube does not affect ability to eat. Some people just use it for meds or extra fluids and extra calories at first. As long as she could safely eat without it she could with it. You can eat for fun as my neurologist says instead of struggling for basic nutrition

I hope you can get to the root of the nausea problem and find a solution so that she can get good nutrition in whatever way works

 

[JohnnyMags]

Thanks Nikki

 

[lgelb]

I discourage going through ER. It's a hotbed of contagious disease, the last thing she needs. Have there been labs in addition to scheduling the endo? Has she tried ondansetron?

 

[JohnnyMags]

Ondansetron - no, no one has mentioned that ...after the endo she has a cat scan scheduled for this Thur ... They told her to use Miralax & Citrucel for constipation and something to coat her stomach (Omeprazole). That's it. I did find out today our appt with the GI doctor was actually with a nurse practitoner. Another reason I prefer the hospitol ... real doctors. Tonight she is moaning and appears to be in real agony so the ER is the only place I can picture getting rapid care. BTW - I asked her tonight about going to the ER but she wants to wait for tomorrows Endo

 

[lgelb]

I am so sorry for her pain. They are thinking she's constipated and has reflux. But nausea often has different roots (thus, the ondansetron thought).

Unfortunately, ERs are full of respiratory illness along with the usual and "rapid care" is not always available. You might want to start scouting home visit options in your area, just in case, for future reference. These may be local NPs or third party platforms that contract with local docs..

NPs can be very knowledgeable/skilled, but everyone is different, just like with docs.

 

[TFB]

Johnny: I had a PEG (feeding tube) inserted last November. It's a dangler type. I secure it to my belly with 3M Medipore tape. I have difficulty swallowing liquids and liquids and pills together, but I'm still eating, drinking, and taking meds by mouth. It turns out I could've waited, but no PAL knows how fast he/she will progress. I got propofol (twilight anesthesia, like for a colonoscopy) for the procedure. It's outpatient. Someone mentioned the mic-key button type that sits flush on the belly. I believe that you (meaning a PAL) have to get the kind that hangs out first, and then after the hole is completely healed (a few months), you can have it changed out with the mic-key type. I'm considering getting mine changed out. I was told you need to get a PEG inserted (or any surgery under anesthesia) before your FVC drops below 50. The respiratory therapist measures FVC at clinic by having you blow into a device. FYI: there's a topic named "PEG feeding tube help" under the "General discussion about ALS/MND" topic where you can find more information. Good luck to you and your wife.

 

[lgelb]

For those using silver nitrate, a study published this month showed that this method was less painful than and equally effective as silver nitrate in preventing/addressing granulated tissue:

1/3 teaspoon of common table salt (Morton’s Iodized Table Salt) applied to the granuloma on days 1, 2, 3, 4, 5, and 6 once a day....applied for at least 15 minutes daily.

As for FVC drops before getting the tube, 50% has been a long-quoted magic number but if you use your BiPAP during the procedure, it can be much lower...an average of 17% in one study. Of course, I'm not advocating waiting till this point, but if your FVC drops between tests, it's not a catastrophe.

How is your wife, Johnny?

 

[Lori7]

I didn’t know you had to be careful your FVC doesn’t go too low before you get a feeding tube. How can you use your BiPAP during the surgery? I don’t routinely get my FVC measured. I just wondered, if your FVC is low, would you notice trouble breathing ?

 

[lgelb]

Feeding tubes for PALS are typically placed in radiology -- not surgery, but under mild sedation at worst. It is not usually a complicated procedure and there is no problem with using a BiPAP. The Canadian guidelines, like those in many countries, support this.

The guidelines (which include Canadian thresholds for BiPAP, different from those in the US) are here:

https://als.ca/wp-content/uploads/2023/06/Expanded-BPR-Manuscript-1.pdf

Most clinics measure FVC (SVC and MEP are actually better measures for your own use) and other breathing measures at least twice a year. If you feel short of breath between visits, you can contact the clinic or your PCP can order lung function testing.