Peg:

[KissJ]

My hubby will have a PEG tube surgery on Jan. 8th. Any advice...any suggestions as we venture into this next step with the Monster, ALS? Thanks!

 

[ottawa girl]

If you check Rose's profile and posts- she has a lot of information (including pictures).

I seem to recall a blog as well- but that may have been posted by someone else.

I'll be thinking of you and praying it goes smoothly for your PALS. (and you too!)

 

[ECpara]

Hi KissJ. My husband just had a PEG put in late November. The procedure was quick, he had pain for about a week although not serious pain. He still can eat a few foods sparingly, drinks Boost Plus, and uses the PEG once a day with a generic bottle of Boost (Walmart's Equate Plus, much cheaper!), then follows with water. It's a pain in the neck to keep up with but he does it. He was advised to have the PEG put in while his FVC readings were above 50%. Wish I could paint you a rosey picture but he's still not too happy about the whole thing. There's still some skin irritation around it, he cleans it daily and keeps gauze bandages around it, he's hoping it will clear up eventually. I keep reminding him that it will someday be his only means of nourishment and I'm happy he has it. He's in denial. He has Bulbar Onset ALS, he still has complete mobility (thank God) although he is approaching the point where no one can understand his speech and choking is frequent. The drool and mucous problems are awful. Poor guy told me tonight how he misses some of his favorite foods. He also hates that he can't be "friendly" with total strangers, or that he has to depend on me to carry out anything that involves detailed conversation. He's stubbornly holding off using the iPad for speaking but knows he is going to have to. I am SO wishing I had my old husband back and know I never will. This is so hard, losing him a little piece at a time. I miss our talks. I miss conversation over a nice meal in a restaurant. I hate the loud noise he makes to clear his throat. I miss him yelling for me across the room, he snaps his fingers now. Guess I should be glad he can still do that. You are right, what a monster disease, and the worst is yet to come for us. Sorry to vent but you 're a wife of a PALS and I know you'll understand. My heart is heavy. The Lord has been good to us, we feel his peace, but reality stares us down every day. I'll pray for your hubby's PEG procedure and for you.

 

[alador]

My husband had PEG put in a year ago, January 2012. He had very little discomfort following the surgery. He continued to try to eat some by mouth but shortly decided that it required too much effort. For the past 10 months or so he has been entirely tube fed and has regained most of the weight he had lost.
It does require some getting used to and I know he misses "real food" as eating was one of his greatest pleasures. He also has lost ability to talk and is now using Ipad to communicate
As he also has lost ability to write.
I just want to say that I wish your husband as much success with the PEG as we have had. I do not think he would still be with me without it and I thank God for every day we have.
Will be thinking of you and sending prayers for an easy procedure

 

[KissJ]

Thank you so much for the information it is helpful for what is ahead. God Bless!

 

[sadiemae]

How did it go? My only advice is to go on a bland diet for the first 72 hrs after surgery when eating food by mouth. No meatloaf, mashed potatos and chocolate milkshakes!

 

[rosec]

How did it go? My only advice is to go on a bland diet for the first 72 hrs after surgery when eating food by mouth. No meatloaf, mashed potatos and chocolate milkshakes!

And definitely no pizza! My husband got his tube almost 2 years ago, because his doc felt it was better to do it early, when his FVC was above 50%. For the first couple months he just poured some water down to keep it clean. We noticed if he ate pizza or something else that had a lot of grease, next morning there will be a yellow blob of fat near the opening! We had to clean the opening thoroughly, otherwise the plastic syringe will slip off the tube opening.