Already a member? Sign in
What - Inspire is a place where you can connect with people who share your health concerns and find information and advice in groups sponsored by organizations you know and trust.
Why - As a member you can use Inspire to let friends and family know how you're doing, contact others who share your health concerns, receive personalized updates and information about participating in surveys and clinical trials, and more.
How - Joining Inspire is completely free and usually takes less than a minute. Join now!
I have modified a camal bak hydration pack to wear will I am cycling. Use a primer bulb (to pump) and one way check valve (prevent back flow to my stomach) attached between my camal bak and feeding tube. The primer I use is a bulky heavy motor boat gasoline primer bulb.
Anyone have any suggestions for a lighter or smaller primer bulb????? or a better rig to hydrate while running or cycling??????
Thank You
If anyone... has any idea of a new type
Hello Bootini,
WAY TO GO, enjoying life and making things work for you is what life is all about. You are a true leader in the world.
I wish that I had some idea's for you but I don't.
What are you using for hydration solution? We use coconut water and Ceralyte who's a ice skater and competes national.
Warmest regards,
Lesley a/k/a/ NinaBean
Not being fully conversant with your needs, I'm speculalting, but would something like a Zevex Enterelite Infinity work? Extremely light and faily small. Lots of other pumps out there as well, such as the Kangaroo Joey.
I had never considered a pump because I always thought they were large. Until I found this web site I had never heard of the two pumps you mentioned. I have contacted a pediatric nurse here at the hospital where I work to see if I can get a look.
With the bulb each squeeze has about 2 ounces of fluid.
Thank you so much for responding!
Patrick
I use a Zevex with the "adult size"pack they make but it would all fit in a Camelback no problem. I have seen the pumps on eBay cheap and a good supply of both 1200 and 500 ml bags are on the sharing supply list. The pump can be set to feed up to 600ml and hour so not quite a bolus feed but a flexible delivery.
Tube tied,
I am flabergasted!! I am a health care professional (20 years) working with physcians of all desiplines. A lot of them cycle with me and they have all praised the camal bak set up a colleague and I came up with when I stared the feeding tube in 2007.
No one has ever mentioned the pump to me. Myself... invisioned the IV pumps as the huge ones on patient floors on a pole.
In my quest to improve my configuration I currently use I found this site and first heard of ZEVEX pumps!
I am waiting to see if insurance will pay. Either way I can't wait to try the pump. If your are a cyclist please check out www.harvestofhoperide.com
I look forward to hearing from you again. This is great news.
Patrick
I am very active and play wheelchair tennis and use a handcycle often. One big thing I like about that Zevex Enteralite pump is that its very small and quiet (I thought all pumps were as big as the ones they use in the hospital when I first starting using one). I have the companies "mini backpack" and just strap it to the back of my wheelchair or handcycle and just go about my exercising. The backpack also has a waist belt, so the bag doesn't move around while you are moving about. This might be good for you if you are running.
Jessie
forgot to mention the Zevex also has a fanny pack..works best with the 500ml bag so for you that would be about the same as 8 shots of food before "reloading." Drop me a line if you get into one adn i can help with some of the newbie stuff....cycle on! ( I am an old mountain biker myself but tolerate roadies:)......)
Bootini, have you done any competing? Before my gastroparesis, I did 3 Ironman triathlons and some days I really miss it. I still can't keep enough calories in to begin working out again, but I'm hopeful I'll figure it out. I loved reading about your rigged up Camelbak because cycling is a real passion for me.
Do you happen to swim? I haven't tried since my G-tube was put in because I get frequent infections. I'm just curious if you or anyone has tried the pool. I've heard that it should be ok, but I'm very cautious.
Lynee
Lynee,
I started going back to the YMCA to swim a couple weeks ago and have had no problems with feeding tube infections at all. My doctor told me to keep the dressing on the site during my swim and as soon as I got done, to wash the site well and change the dressing. I have found that swimming also helps with the muscle pains from the site a lot, so that might also be a positive thing when you have a tube and want to go swimming. I've even been in the hot tub and steam room without any troubles. I just wear a one-piece bathing suit, so everything stays snug against my skin and there is less risk of the dressing falling off in the water.
Jessie
Jessie, That's really good to hear. I have a pool in my backyard that I haven't been in for a year because I'm afraid of infection. Another problem I have is replacing calories as I use them in a workout situation, but I think it would be good for me to start to build muscle tone again. I just have to be brave enough to try. The last thing I want is to end up back in the hospital, but if I keep thinking like that and being afraid, I won't ever do anything.
Thanks for the info, it is really appreciated!
Lynee
Ran for a many years. Have been cycling for many years This past March I did my first triathlon. It was a sprint and the swim was in a pool. I had no problem with my feeding tube. Only problem was movement of my head because of the rods in my c-spine. still I had a great time. I was able to make up time on the bike. Glad to have been able to finish...
Patrick
You are right you have to replace the calories if you exercise. I am very creative with the blender and my prescribed nutrition . Since I got back on the bike I have gained 12 pounds. I was nervous at first because of crashing on the bike with rods in my neck.
Don't be afraid enjoy what you love. You will feel very good if you do. You sound like a competitive person ... don't let the feeding tube win.
Patrick
Oh Yeah! I forgot you are an IRONWOMAN times 3. feeding tube just makes things a little more challenging.
I am putting my camal bak aside and going to try the Zevex pump. I let you know how it works. TubeTied seems like he has much success with it mountain biking.
Don't mean to be so wordy but after the past 3 years I have found folks who can relate and I can talk to...
Patrick
Thanks Patrick! I have a Zevek and it's awesome. My problem is my stomach shuts down when I'm working out and refuses to process anything - not even water. That got me in trouble a few times during events like the Ironman because I would just bloat until I threw up. I did a race one time that took 17 hours and afterwards we figured out that I took in about 1000 calories and lost most, if not all, of that. Finished totally wasted and ended up in the hospital - not the smartest thing I've ever done - but it was really cool to finish!
I think you're going to love the pump, it doesn't have to stay upright as it will operate in any orientation so having it on the bike should work.
I'm considering going back to the pool - I hate being afraid to do things. Visited the doc yesterday and he was adamant that I could only do it if I could figure out how to replace the calories.
Lynee
Is the pressure in your stomach geater than the pump preventing the bolus not to go into your stomach?? With the hand pump on my camal bak it definetley goes in to my stomach. It has no where else to go because I put a one way check valve between the hand pump and my feeding tube.
I hate to invest in the Zevex if the food will not go in when I am under the stress of movement.
Patrick
Bootini, No my problem is that increased volume causes me pain - and lots of it. The pump doesn't have anything to do with it.
If my stomach has decided today it doesn't want to work at all (about 75% of the time), any volume causes the nerves to go "nuts". I don't know how else to explain it.
The pump is great for regulating - it would feed you at a very steady rate and after some experimenting you can probably find just the right flow for what you are doing. It's also very small and light and you wouldn't have to mess with it while you are working out.
Lynee
That is good to know. Have a great weekend. Start training I look forward to riding with you in October.
Patrick
Took your advice! Went to ebay and won the bid for a Zevex Enterlite pump. Can't wait to try it during a ride. Thanks for your suggestion.
I am aware that the best road cyclist in the peloton were mountain bikers first. Ever tried cyclocross?
Patrick
Add to the discussion