Posted By: Kerri PEG Cap Keeps Popping Open - 10-13-2012 01:26 AM
Hi, Friends.

I'm about 21 radiation treatments in and things are getting rough.

My PEG was placed about a week ago and I'm still getting used to the the bag and bolus feedings. I'm still an not even closed to my quota of 6 cans per day. Whenever I try to do a feeding more than 6 oz at a time, my PEG cap keeps popping off. I have learned that I must be very careful not to bend forward or squat for a distinct amount on time after I eat, but sometimes it just happens despite being very careful. I have had to tape the cap shut tonight and the thing just keeps getting gummier and gummier due the buildup of adhesive.

This is all very frustrating in that it's supposed to make my life easier and it making things so much harder right now as I cannot feed/medicate myself without help most times. I am taking in very little orally, except sips of water throughout the day.

I'm just looking for any quick tips from anyone before I have the VNA come out to help.

Thanks,
Kerri
Posted By: ChristineB Re: PEG Cap Keeps Popping Open - 10-13-2012 02:04 AM
You should have a feeding pump. Ask for it! This way it can run overnight while you sleep.

Something doesnt sound right about the cap popping off by itself.

When you do a feeding you should be sitting up and then stay sitting still for at least a half hour to let your stomach settle. If you arent feeling well from the feedings slow it down and add water. Usually by slowing it down and adding water will do the trick with nausea or a bloated feeling.

Kerri, watch your intake!!!! This is very very important and will make things so much harder if you are skimping on your nutrition and hydration. I dont want to see you wind up being hospitalized fro malnutrition and dehydration. You will feel horrible, please be more careful!!! Your lack of nutrition will catch up with you and will make you very ill. Your body is fighting the effects of treatment and the cancer is burning up calories like crazy so you MUST push yourself to take more in. Can you drink ensure? Are you still taking sips of water?

Wishing you all the best. Hang in there!!!
Posted By: KP5 Re: PEG Cap Keeps Popping Open - 10-13-2012 02:14 AM
I know it's the last thing you want to hear, but push through it. I promise in a couple months you will be moving on with life and thinking, "that wasn't so bad!" Or at least that it went by quicker than you thought it would.
Hang in there. You MUST get the nutrition, somehow. When do you see a doc again? Please have them check your tube. Something sounds wrong.
Don't forget to try to swallow something too. You don't want to lose that reflex.
So sorry. We understand how much it sucks. We really do.
Kathy
Posted By: ChristineB Re: PEG Cap Keeps Popping Open - 10-13-2012 02:24 AM
There are tiny clamps you can get that will clamp the tube closed. These work almost like miniature clothes pins but they look like a C-clamp with a very small screw to use to close the clamp. Im sorry its so hard to describe over the internet. Ask your nurse, she may have one for you or know where it you can get one. I never knew about them until my HBO nurse gave me a couple she had lying around her facility. Maybe in a pharmacy where they have durable medical equipment they would carry something like this.
Posted By: davidcpa Re: PEG Cap Keeps Popping Open - 10-13-2012 12:19 PM
Kerri,

Don't become dependent on the PEG. You really need to continue to swallow every day. Not saying that's easy but you must continue to use those swallowing muscles each and every day.
Posted By: sandisays Re: PEG Cap Keeps Popping Open - 10-13-2012 07:30 PM
Really it sound like it is defective, believe me that happens. I had no idea there were so many differnet peg tubes. I have given my doctor a list of three that I find acceptable. That doesn't mean one of them couldn't be a lemon but I have had some that are just unacceptable. Talk to your doctor and get a new tube.
Posted By: Lynne B Re: PEG Cap Keeps Popping Open - 10-13-2012 11:37 PM
Hi Kerri,
Sounds like it's defective to me. After I came home from finishing my rad treatment, I was using my peg for o/night feeds and additional fortisip/ensure drinks but the cap and assembly underneath it came off, so I had a minor panic for 5 mins but luckily my son was here and looked in the supply box I'd been sent home with and there was a whole spare part in there that I'd never noticed and together we managed to change it. No problems since with that, so have you got any supplies like this perhaps? My peg line has a clamp on it, hasn't yours?
Anyway, hoping it's sorted for you soon.
Take care
Lynne
Posted By: Kerri Re: PEG Cap Keeps Popping Open - 10-14-2012 01:22 AM
Thanks for all of your input and concern.

My docs gave me a goal of being up to 4 cans by this weekend and 6 cans by the end of next week.

I am sipping water throughout the day, but otherwise unable to tolerate any milk-based foods as they exacerbate the sores on my tongue. I'm making sure that I continue with the water and the swallowing saliva.

Christine, I have taken your advice and slowed down the flow with the bag feedings and added 1-2 cups of water to each feed. I sit mostly upright, in a very slightly reclined position for at least 60 min. I have a hiatus hernia, which makes getting filled up intolerable.

As for the defective equipment/plug, I am going to call the VNA tomorrow to see if they can have someone come out and replace the part or help steer me in the right direction. I may have to call interventional radiology (who put the PEG in) to fix it. I have an appointment with them on Friday in order to remove these special "tacks" the hold the PEG in place. The type of PEG that I have is called the "pig tail". I don't know if that helps anyone.

Thanks so much, my friends. This is getting to be very hard and I have a lot of help, for which I am grateful.

I'm just having a very hard time physically and emotionally right now. Sometimes I feel like this treatment is killing me instead of curing me. I burst into tears this week when my docs said it will be getting a lot harder before treatment ends.
Posted By: KP5 Re: PEG Cap Keeps Popping Open - 10-14-2012 01:34 AM
Hang in there Kerri. It will get worse, but sooner than you think you will be on the upswing. Just stay hydrated, get the nutrition, hunker down and hold on! You are doing a great job. Sleep as much as your body wants.
Keep posting. We're here.
Kathy
Posted By: CherylR Re: PEG Cap Keeps Popping Open - 10-14-2012 03:04 AM
Kerri - dh had problems with cap popping open too. be sure to wipe the cap off and the tube off. If the thing is wet from the feeding it will tend to pop easier. And ask the nurse for something that works!!!
Posted By: itsoktoday Re: PEG Cap Keeps Popping Open - 10-14-2012 04:17 AM
I just had to say something about a peg tube. What you are trying to use is called lopez valve. Usually Intervetion Radiologist puts in the tube. It stops there. But when you are back in the hospital the nurses must have put a lopez valve on for you. It's a very nice valve and works great if they would take time to show you how to use it properly. I luked out and they took the time to show me how to use the pump at night and the bolus during the day. All those functions go through the lopez valve. I would recommend you talking to a nurse in Intervention radiology before talking to your Interventional Radioloist. He or she won't know what it is. Now for cap falling off. It usually does that when you have turned the valve in the wrong position to close it off from feeding yourself. The best way to make sure it doesn't fall of is when you are looking down at the valve it looks like t as a cross. The off position is when the longest part is down and it looks like a cross. The orange cap is on the left. I have had many accidents by having not turned the valve back to that position or someone has interrupted me. I have had mine for quite awhile. I actually did it today because I wasn't paying attention. I hope this helped and if not I could be talking about something different. Take care!
Posted By: saxicola Re: PEG Cap Keeps Popping Open - 10-14-2012 09:08 AM
Hi Kerri, Hang on in there, as the others say it will get better but you need to get through this bad stage first. If you can get a pump for overnight feeds that go in at a nice slow rate, it should really help. That will free you up during the day to focus more on taking what you can during the day.
Posted By: misskate Re: PEG Cap Keeps Popping Open - 10-15-2012 01:10 AM
Hang in there lady ! I know its so crappy going through the treatment. It really breaks you down. I'm so sorry you are going through it. Soon you will be on the upward path where you start to feel better and better everyday and it will be euphoric!

Wishing you weren't feeling so bad and hope things improve soon.

XOXOXO Kate
Posted By: Kerri Re: PEG Cap Keeps Popping Open - 10-15-2012 10:39 PM
I had my PEG replaced today. It seems that the one that I had migrated too far into the duodenum and they think that's why I was getting sick with the feeds. I hope they are right because my stomach still doesn't feel all that great, but I suppose that could be due to the procedure earlier today. They replaced it with a low profile peg called the" Mic-Key". I've done one feed with it and so far, so good. I'll keep you posted.
Posted By: aimlee311 Re: PEG Cap Keeps Popping Open - 10-15-2012 11:33 PM
Kerri I'm so sorry to hear you're struggling. Sure sounds like you're right in the thick of it! Just try to remember that each day is a day closer to being done. When my mom was going through treatments, when it started getting really tough that is the only way we could help her through the day. Keep fighting and rest when you need to! And of course, keep us updated.

Thinking of you!
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