Feeding tube or no feeding tube...that is the question

[MarciaA]

My sister is debating whether or not to get a feeding tube. Can anyone out there give us/her advice?

What the quality of life like with the tube versus without? How is your energy with versus without? Do any of you with a feeding tube wish you hadn't gotten one? Do any of you without a feeding tube wish you HAD one? :confused:

Sorry for the zillions of questions, but this is the "hot topic" right now for us.

Marcia

[liz]

Marcia -

All I ever used to hear about feeding tubes before I came here was that they were an "artifical way of extending life". The connotation was always negative - people who don't know when to give up, so to speak. Here there are quite a few folks who have expressed having no regrets about getting a feeding tube and do not feel they have a poor quality of life. Generally folks say they put on some weight and felt better. Based on what I have heard from people on this forum, my opinion of feeding tubes has changed and I am now very open to the idea.

As for care and maintenance issues, I imagine it depends on how well your sister is doing all over (hands especially, I would think) how much daily assistance will be needed. Other issues folks have raised include finding a doctor who understands ALS to do the procedure and varying experiences with the procedure itself (discomfort, complications, etc.).

Those with direct experience will jump in as they find your post. It would also be helpful, I'm sure, if some CALS could describe what was involved on the caregiving end. Is your sister under pressure to make a decision real soon? You could use the Search option to locate previous posts on this subject.

Best wishes,

Liz

[midwestgirl]

Hi Marcia My mother just had a feeding tube placed April 2nd, and feels it was a very good decision - even though she did not initially want one. I think meals just got too frustrating and scary - she was doing a lot of coughing and choking - even on a pureed diet. She would also quit eating just because it was taking too long, not because she was full. Her improved nutrition and fluid intake was obvious in a relatively short period of time. She also has more energy, even though she is in a wheelchair and can't walk, she is just more perky. The procedure was quick - we were at the hospital at most 3 hours. The incision was sore for a couple days, but not sore enough to keep her from playing cards, which she loves. It's a good idea to have a feeding tube place while your sister's FVC is above 50%. The only negative is that my mother truly misses eating "real" food - it is such a social activity. Although, some people are able to eat food, and use the peg tube to supplement their diets. I hope this was helpful.

[davis07]

Marcia
I got mine about six months back, it is good to get it was
nothing, I was sacred it would be so depressing, but it takes
about 5 days to get well. If you are able to do it yourself
as I do now its good . It wouldnt be much trouble for
someone to do about 3 times aday. I use mine for water
and ensure right now,as I can still eat.

Davis07

[nspoc]

Hi Marcia - I'm a CALS. Pat, PALS in my care, had her tube placed last August. The criterion was her breathing - not her eating. Our clinic is pretty insistent that you consider it at the 50% Forced Vital Capacity Level. She was just below that. Some of our fellow patients have resisted that, and when they finally gave in, they had a harder time with the tube placement - some even exsperienced a rapid downhill change.

Pat never uses the tube now. So I clean the site and flush it every day. She used to use it in the beginning - because food just did not appeal to her. She gained back about 14 pounds and her appetite rebounded - so now it is all oral feeding. No bulbar symptoms - so feeding, chewing, swallowing are all OK.

When she was using the tube it was quite easy - we hung a bag on an IV pole and ran a couple cans of formula in at a time over about 2 hours, then the same in the evening. She did her computer, slept, watched TV, whatever. Not hard to do for the CALS at all.
I just had to make sure I kept the bag clean, and flushed her tube as suggested - No problem at all.

In our support group the people who use the tube are happy they did it. They especially talk about the benefit they feel from being properly hydrated. They all look much pinker, most have gained some weight, all talk about more energy. Most can eat some things. Now they eat for pleasure/taste and use the tube for nutrition.

My advice - get it early rather than late. Losing weight results in muscle loss that can not be regained. Better to not lose it.

The procedure is much better tolerated early rather than late - we have some members in our group who did not require even aspirin. On the other hand, Pat was quite uncomfortable for two weeks. Don't wait.

Also - go to someone with experience in ALS - it matters what they use for sedation. Pat had to bring her bi-pap with her for the procedure. An inexperienced GI guy would not even know to tell you that - or even what to do if you showed up with it.

Summary - I think it is a no brainer - your mind is vital and you have something to live for - nutrition REALLY improves symptoms (not the muscle weakness) such as fatigue, loss of energy, alertness, etc. Won't stop the disease - but it is a fairly minor procedure that results in huge improvements in quality of life.

Good luck! Beth

[megs]

Marcia ......My Dad was diagnosed with ALS 17 months ago .....He had a PEG feeding tube inserted on the 7 november last year , he ended up passing away on the 12th of November as a direct result of the PEG insertion ...he ended up with a pneumoperitenium , gastroparesis and a cold sepsis ....We just wish someone had told us about the level 3 fluids before we had taken this step to have the PEG ...he would still be with us .

[anne]

My mom has MND with bulbar symptoms. Diagnosed June 2006.

Eating became such a struggle that she decided that it was a must to have the Peg. The fear of choking was very stressful. She had the procedure done Jan 23, 2007. The procedure took no time at all. She was able to gain the weight that she had lost back. It was the best decision that she made because she is no longer able to take anything by mouth. She was not willing to entertain the idea last year and I think we were in denial that she would need one.

I am not dismissing that there are complication that could arise but that could happen in any medical procedure no matter how big or small.

Good luck. Anne

[paula-jane]

We had my mum at the ALS clinic yesterday where we discussed a feeding tube with the doctor, mainly because she has been choking on her liquids. We have really become quite diligent with her eating times. They are quiet and serious. She has severe emotional lability issues and therefore, eating and drinking is often quite dangerous. Sudden laughter and sudden crying results in flying food and coughing and sometimes choking. She simply refuses the idea of a feeding tube (and that is okay) and insists that she is a great eater.... which she is. Because of this site and the amount of advice and information from people who have feeding tubes... I feel better equipped to help my mum with this decision as time goes on.
thanks.

[bucky]

I have Bulbar onset A.L.S. I had a feeding tube inserted March 5th. I now rely on the tube for all my nutrition. I had lost 35 pounds in a year. Eating was very difficult. I would cough and choke to the point where my back and chest caviity was sore all the time. I hit a few bumps in the road getting it in. My stomach sits higher than normal. It took two trys to get the tube inserted. But now that I have it I have stabilized the weight. I know longe cough or choke. The soreness in my back and chest cavity is gone. I take my meds through the tube as well. I am able to get three of them in liquid form along with the vitiamins. I love to eat and miss real food. I don't ever regret getting the tube. I use tape to secure it across my stomach (paper tape) and am able to function just fine with it.

[kfarrald]

My husband waited until it was necessary, which was too long. He would have been healthier when it was first discussed. He just had a few weeks of problems that I don''t think he would have had a month before. He is doing better now.

[caring daughter]

My dad got his feeding tube in January 2007 and is doing fairly well with it. My dad had been coughing and choking when eating or drinking and had lost about 60 pounds. In our case, the tube brought an abrupt stop to eating or drinking anything by mouth. This has been a tough adjustment for all involved. My mom feeds my dad a formula called Jevity. My mom also gives water, nutritional supplements, medication and recently started juicing fresh fruit and vegetables for my dad which she gives through the tube. Despite my mom's efforts, my dad has not gained any weight back like some have posted however he holds steady at 130 lbs. For my dad, I think the feeding tube was the right decision (my dad has bulbar onset symptoms so his eating ability and voice are now completely gone and only more recently he has had some fine motor changes in his hands...he is still walking). I empathize with what you are going through at this time. It's a tough decision on an already tough path that we are walking with our parents. Regards, Shelly

[hope]

peg,

Do you mind me asking what is the level three fluids mean?

hope.

[Brentt]

I have had my peg for 8 months now and am happy to have it. The sooner the better. It's hard to regain muscle after it's been wasted or cannibalized by its own body. I can't care for myself so my wife handles all of the care of the peg. She became familiar with all aspects of care very quickly. I plan on living a long time now due to the peg. It is the number one reason I am still alive. It has simplified the chores for Sandra were it used to take me 1 hour or more to eat now only takes 10 minutes.The're some pouches available to help secure the tube so it's not in the way if you should choose to use one.I was terrified during the placement of the tube and even cried. I was a 260 pound football player 10 years ago imagine that me crying over a 15 procedure. Actually I was very emotional about what I had been going through. I am so glad I made the discission to have the procedure done. Have courage and think about the benefits .

[joelc]

I just had a PEG installed yesterday.
Several months ago my FVC was 30% and I was having extreme trouble swallowing and was getting nervous about my condition. Since I was not getting any support locally we went to a major centre and talked to a respiratory surgeon, he tested me and found my FVC had improved and was 40% (according to his test), he pushed for a PEG ASAP before breathing got worse. I agreed to have it done.
It took 2 months to get the appointment, by this time my swallowing was much better, breathing about the same, almost cancelled the appointment but decided to go through with it anyway.

Even with my low FVC the doctor felt it was safe as it only takes about 5 minutes. He mildly sedated me and left me in almost a sitting position. I was conscious the whole time. He sprayed a freezing compound in my throat and inserted the light/camera, found the right location and 2 minutes later it was all over - EASY.

This is the day after and there is minimal discomfort - hardly know it was done.....and I have only taken Ibuprophen. I don't plan on using it until I really need to, but it is in place for that day.

I post this so others might not fear doing this before it becomes an emergency. I encourage everyone to give this significant consideration before your breathing drops to a point it becomes dangerous and/or your swallowing gets critical and you start aspirating food and end up with pnemonia.

Please consider having this procedure done before you really need it. It will give you time to adjust to it before you are completely dependent on it. It really is NOT a big deal from my experience.

Just my 2 cents worth.

[liz]

Thanks for sharing that experience, Joel. Very reassuring. Sounds like timing is very important.

Liz

[KateO]

How complicated is it getting a PEG? Again, I'm in Montana - when I reach the point where I need a PEG, is that something that should be done in an ALS center - or, in a larger hospital? I've had such terrible experiences with neurologists here. Does any surgeon install a PEG - or, someone specialized?

[joelc]

I just explained my recent experience on the previos page of this thread. If you have not read it, I hope it will answer most of your question.

It is a very simple procedure. Your neurologist will not be doing it. The ALS centre will refer you to a surgeon they know and who has experience with doing many of them. I went to the hospital for the procedure then came back to the ALS centre to spend the night and be taught how to care for it. EASY. The whole procedure was done in less than 10 minutes - start to finish.

[KateO]

Thanks Joel. I had read your previous post explaining the surgery. I just wasn't sure if it had to be done by an "expert". Guess not. We don't have an ALS center in Montana. So, I wouldn't have option of spending night there like you did learning how to care for the PEG. Would you recommend having the surgery done near an ALS center ? Or, do you think a smaller hospital in Montana would be prepared to teach me how to use it?

[joelc]

I think the best thing to do in your case is talk to your doctor and get him to refer you to a doctor who has experience with PALS and has placed a few PEGS. We have a fantastic ALS Centre here which intervenes for us, they resource other doctors and such for us, they don't actually do these procedures themselves. So the fact you don't have a centre close really is not an issue. I know of other PALS who had this procedure done at their local hospital, stayed in over night and got training there. Here, in our part of Canada, pubic health nurses also make house calls to make sure everything is going well after the surgery.

The important thing here is to find a doctor who has done a few. training and use is really easy and any nurse show be able to help.

Hope this helps - if you have more questions I would be happy to answer the best I can

Take care

[KateO]

Thanks Joel. This helps. I better find out if there are any surgeons here that have experience putting PEGS in PALS. I appreciate your feedback.

[hboyajian]

Some PALS have difficulty with some types of anesthesia. Though the procedure is straightforward for most people, it is worth making sure your surgeon (with my dad it was a gastroenterologist) is familiar with any special issues that ALS may present.

[Montana Carol]

Hi, joelc and others: Can you still eat by mouth now that you have a PEG? And do you like to? I was wondering, could a person chew food just for the taste and then spit it out, without choking? Or does your chewing apparatus get so weak it's not fun anymore? I hate to think of not being able to munch on salami and crackers, or some other yummy things we indulge in while watching TV etc. I choke more on my own saliva than I do on food, so far. I'm trying to learn to concentrate better, and swallow before I choke! Carol

[joelc]

Hi Carol, having a PEG does not change anything. If you can eat now, you can eat later. All the PEG does is provide another access to your stomach.
So you can use it when you want and eat normally when you want.

After awhile a person gets good at swallowing past a choke and ignoring it. When you get tired of choking you can use your PEG to get nourishment. Save your swallowing for things you love! And, YES, you can chew on things to get the flavour then spit them out.

Timing is different for each person, you will know when you need to change your habits.
Take care!

[olegrandad]

My wife has refused a feeding tube, which surprisingly is the only decision she's made that her daughter HAS gone along with. Her daughter got a temporary guardianship by saying I was starving my wife to death. My wife can't swallow, she chokes on everthing, yet still refuses a tube. The demontia clouds her mind quite a bit, but I really believe she's made a concious decision that she doesn't want to continue like this. She's gone from 150 lbs. to under 90 lbs. in alittle over a year. Mike

[emjoi]

But that's the thing. There really isn't much of a choice. To refuse the peg, is to say "It ends here".
If you wish to be with your family a while longer, then when the time comes it's a path you have to take, no matter how you feel about it.

Sorry for being blunt.

[patricia1]

My wife has refused a feeding tube, which surprisingly is the only decision she's made that her daughter HAS gone along with. Her daughter got a temporary guardianship by saying I was starving my wife to death. My wife can't swallow, she chokes on everthing, yet still refuses a tube. The demontia clouds her mind quite a bit, but I really believe she's made a concious decision that she doesn't want to continue like this. She's gone from 150 lbs. to under 90 lbs. in alittle over a year. Mike
Your wife is very depressed. Most people dying or are very sick become depressed After they are put on medication for the depression they do not want to die and become more willing to cooperate . I think your wife need to see someone to talk to andd get on antidepressions It will make a world of difference in her attitude. Pat

[NvrGiveUp]

Hi folks,
Was just sneaking some research time in while on our trip in Brazil. As some of you know I have been wondering about T getting a feeding tube, I´ve been reading over the posts and it seems like a good decision. I also found this source on the internet written by a PAL with a feeding tube. Was very easy to comprehend, here´s the link:
http://www.temple.edu/instituteondisabilities/news/docs/PEG2007.pdf

I especially liked that it addressed the ability to swim, bathe, shower, etc... which I know are important to T. Check it out...

Hugs,
Pam

[ZenArcher]

NvrGiveUp - Excellent link

[bucky]

I have had a tube since March 5th. This is an excellent link.PALS helping PALS. Thanks

[jimercat]

Pam,

Thank you so much for the link!

Very good info. My BIL just got a PEG due to esophageal cancer and the family didn't really understand the process.

I'm gonna print this out for them and save this for my own info for when the time comes for my PALS.

[TypingTerror]

My FIL has a feeding tube, but his was placed a couple of months before he was diagnosed. At the time, they only knew he was aspirating and had a paralyzed left vocal cord. He had lost 20 lbs at the time, and he was not a big guy to start. His weight has stabilized, and he is doing great with bolus feedings. He is unable to eat anything by mouth at all, so there was no discussion about whether or not to get it. The only problems with getting it for him was that he had scar tissue that made putting it in endoscopically impossible the first time, so he had a longer recovery with it being done surgically. However, he accidentally pulled it out getting out of bed a few weeks ago, and the second one was able to be done endo style since it had already been done before. Overall, the tube has not been any trouble for him. He's just a little self-conscious about it being noticeable under his clothes when he goes to the doctor or with me to the store. And he definitely misses eating. I didn't realize what an appetite he had before until I had to adjust my grocery shopping.

[carolb]

I will be receiving my PEG tomorrow, could you please tell me what level three fluids are?

[Saubier]

Paula Jane,
Get your mum on a compound of quinidine and dextromethorphan. It will completely eliminate the emotional lability. It improves eating immensely.
Pappy