My surgeon has never inserted a PEG tube in someone who's still able to walk. By this I assume he means he's only performed the procedure on disabled/bedridden/elderly/dying patients. I'm his first physically active patient.
I'm not getting a lot of concrete answers on what activity level I'll be able to attain with a PEG, and if there's certain exercises I should avoid. Plus, I only had the tube inserted a week and a half ago and I seriously need to know if I am supposed to wait the
4-8 wks for the site to heal completely before resuming exercise or any sort of workout routine.
I'm wondering if there's any physically active people out there with a PEG, especially any former/current athletes (any level of competition, even recreational) who can give me info from personal experience.
I was an athlete before my injury, extremely active in bodybuilding, track (sprinting), soccer, rock climbing, and horseback riding. Physical fitness is hugely important to me and I'm determined to stay fit even with a PEG tube.
I tried a couple exercises today to see what my abs are still capable of - I can do pushups, squats (including one-legged squats) and the plank, but when I tried leg raises (lying flat on my back and raising both heels off the ground) I found it was physically impossible. I was a little stunned; I'd never considered the possibility that there might be exercises I will actually be physically INCAPABLE of performing.
I don't know if it's too soon (10 days) after my surgery to begin a workout routine again. Has anyone had advice from their surgeon on how long to wait before serious activity?
Anyone know if there's certain things I should avoid - i.e. ab crunches/situps/etc? What about things that are concussive or involve a lot of bouncing like jumproping, jumping jacks, jogging, the like?
Also, during the course of my progressive inability to eat and resulting weight loss, my ab section has gotten soft and lost its tone. I'd really like to restore the chiselled, flat, hard midsection I had, but don't know if this is physically possible with a PEG? Anyone out there with a PEG whose still managed to keep a washboard?
Plus, if there is anyone out there with a PEG who still maintains a high activity level - do you find it hard to get enough nutrition/calories via your tube to keep up with your activity level?
I know that's a ton of questions, but any and all advice, thoughts, comments, and personal experience is greatly appreciated. Thanks to everyone who has actually read through this long post!
-an athlete who's going nuts post PEG-surgery
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Can I still remain physically active/fit with a g-tube
- By jackrabbit
- Posted August 29, 2009 at 2:22 am · 22 replies
- In Home tube feeding (HEN, enteral nutrition)
- Shared with the public
- Edited August 29, 2009 at 2:26 am
22 replies
- Oldest first
- Newest first
- By NinaBean
- Posted August 29, 2009 at 9:33 am
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Hello Jackrabbit,
YES, YES, and YES, you can be very active and live life to its fullest if you CHOOSE.
My daughter Nina is an avid ice skater has competed in 2 National Ice Skating events. Nina rides her bike, swims, and loves to play in the park. Nina has had her G-tube since she was 4 day's young and is now 10 year's young.
I would highly recommend you contact Rick Davis who's the President of Oley and talk to him. You can reach Rick Davis at: rickdavis320@comcast.net Rick has had his G-tube for about 8 year's now. Talk about an active person its Rick. Rick will be an AWESOME resource for you.
Blessings,
Lesley - a/k/a NinaBean
- By Juhint
- Posted August 29, 2009 at 1:01 pm
- Report post
I was told to wait one week before starting to excercise again - but I waited a bit longer because I did have quite a bit of pain after my peg tube surgery. Just listen to your body - it will tell you if it is ready to excercise.
I had a similar situation with my surgeon - he usually only puts in g-tubes in cancer patients or elderly people. You also might want to inquire about getting a low-profile design tube once your stoma tract has healed up. It is a lot less obvious and makes excercising so much better. I first had a peg-tube put in with an internal fixation device - I could feel that lots when excercising and I had a quite uncomfortable experience when getting off my horse the first time riding post-surgery (I got off as always and rammed with my peg-tube against the hard saddle - the internal fixation device actually caused some bruising in my stomach - very painful).
I now have an AMT Mini One button with a balloon inside - and I now don't feel anything when excercising. I am the first patient of my gi-doc that switched to a low-profile design - and did lots of researching on the internet myself. With the AMT Mini One button I can even lie on my stomach for excersing my back muscles.
I had to wait for five weeks before receiving my first button and even though I had some problems getting used to the balloon inside my stomach it really is a lot better than the longer peg-tube - especially if you are very active. (I am a horse back rider, do strength training three times a week and go nordic walking twice a week).
If you have any more questions, just ask - I felt quite helpless and overwhelmed too in the beginning!
Take care,
Julia
- By jackrabbit
- Posted August 29, 2009 at 1:09 pm
- Report post
Wow, it's encouraging to know that there are highly active people and competitive athletes with PEGs.
I'll definitely be talking to my surgeon about getting a button...
- By jackrabbit
- Posted August 29, 2009 at 1:24 pm
- Report post
I had to move back home due to the facial injury which caused the whole need for a PEG... and my mom is SO worried that physical activity will cause complications or slow the healing of the stoma, etc, etc that she's driving me nuts. She refuses to even let me load the dishwasher, and she's breathing down my neck about rest and recovery and 'overdoing' it whenever I try to cook a meal for the family. (Just because I can't eat doesn't mean I don't still love cooking.)
I exercise in secret when she's not around because I'm sure she'd have a nervous breakdown if she saw me doing pushups and the like.
I do want to be careful though - I don't want to slow my healing or cause complications. But I'm fairly sure lack of exercise is worse for me overall, and it's already 11 days after surgery and I don't think I still need to be sedentary.
My mom thinks that I, the eternally driven athlete, am going too fast and pushing myself too hard, whereas I think I'm going way too easy and careful.
- By karenlas
- Posted August 29, 2009 at 2:06 pm
- Report post
Active is Trevor's middle name. If you saw him you'd never know he has a g/j . He has the mickey low profile. We love it. He swims, rip sticks, and is palying flag football for our city!! Last night he rushed the qb for a "sack"!!! He does push ups, sit ups and wrestles with my older son all the time. All that to say, he never sits still with his tube.
Be well, and good luck with your recovery.
Karen
www.caringbridge.org/visit/trevorlasure
- By prettykitty
- Posted August 29, 2009 at 3:38 pm
- Report post
I have a GJ feeding tube and I am very active! I play wheelchair tennis, push my wheelchair around for 2-3 miles a day for exercise and I also do yoga and swim several times during the week. The only thing I do to keep the tube out of the way is put it underneath my clothes.
My doctor told me that as long as the tube site didn't hurt really bad, I could go back to doing most of the exercise and sports I was doing
(I play wheelchair tennis a lot during the summer).
Jessie
- By Rodeogrl02
- Posted August 29, 2009 at 6:09 pm
- Report post
I have a J-tube I had to wait for 2-months before doing like anything because they tried to put a g/j tube in but that moved, then they tried to fix that and the whole thing fell out so I was rushed to my 3rd surgery in 24 hours to put a J-tube in and fix the mess the g/j tube made which created a large incission down my abdomen. But I finally started riding my horses again and plan to be back barrel rracing and roping soon!
- By Sanford
- Posted August 30, 2009 at 10:15 am
- Report post
I have traveled all over the country with my tubes, both by plane, train, and car. I walk as much as a I can (I have other health issues which makes it difficult, but I now have a cane which helps). I know people, including one of Oley's leaders, who go mountain climbing (complete with photos from the top of the mountain holding up the feeding back). Many of our members walk every year in the Oley walkathon at the conferences.
And I just auditioned for an opera company here in NYC and made call backs. The tubes interfere somewhat with diaphragmatic support, and I'm a little out of shape anyway. But I'm going for it.
- By Alan_Robinson
- Posted August 30, 2009 at 12:23 pm
- Report post
I have had a g-tube twice in my life and now have had one full time for two years, I took me a while to realize that i had no limitations for exercise. I was not as fit as you but I walk, paint, jog and carry around 30 pounds of books to libraries when I do research.
I have had some problems though with the tube it It seems that the cap of the g-tube( i do not have a low-profile device) gets caught on my pants and opens up on its own. I resolved this by wrapping the caps with fabric adhesive tape. Also, I have found that if I do activities that involve bending over right after I "eat", gravity takes over and I get some reflux, So I would use the old rule for swimming before anything that puts your head below your stomach
- By bbidals
- Posted September 30, 2009 at 11:59 am
- Report post
This is the second time I have had a peg put in. I think that I will have it for the rest of my life (67 years young). I had throat cancer and the treatment caused me not to be able to swollow without going into my lungs.
Iam very active incuding going into work a few hours each day.
My biggest issue is leakage. The exteral stop keeps moving out and I get a lot of leakage. I have solve the issue by placing a clip (plastic) over the stop to keep in from moving out. When it does move out, the balloon pulls away from my stomach lining and lets contents of my stomach leak out. Any suggestion?
Thanks,
Paul
- By oleyfriends
- Posted October 1, 2009 at 10:48 am
- Report post
Paul,
Check out the Tube Feeding Tips page on the Oley Web site at http://www.oley.org/tubetalks.html. There are several suggestions for leakage and product ideas. One in particular that might help is cutting a maxi-pad and using it as a split dressing.
Feel free to contact me at the Oley office if you have questions or want to talk to another experience tube feeder.
Roslyn Dahl
Oley Staff Member
dahlr@mail.amc.edu
(800) 776-OLEY
- By bbidals
- Posted October 1, 2009 at 11:48 am
- Report post
Per the suggestion, I talked to Rick Davis who has had a g-tube in for 9 years. His suggestion is going to the MIC-KEY button. Since he change to that he can do anything he wants including climing the Grand Canyon from rim to rim. He has very little leakage and can move around without any problems ;)
Now I have to convince my doctor about it. My guess is that he has never put in a MIC-KEY button before
Love this website!
- By Juhint
- Posted October 1, 2009 at 1:08 pm
- Report post
I first had a peg-tube and then changed to Mic-Key button and now an AMT Mini One, which is by far the best in my opinion! (the AMT mini one is even more low-profile than the Mic-Key and the outer plastic part is more flexible .
I am the first button patient of my gi-doc as well :-).
And yes, you can do anything with your button :-). Not only can I be as physical active as I want, I can also sleep on my belly without it hurting my stoma and I am an avid belly sleeper!
I had to research all the button stuff myself, because my gi didn't know, but I am sure glad I did - I am really glad I got rid of the long dangly tube!
- By prettykitty
- Posted October 1, 2009 at 1:42 pm
- Report post
I have a GJ feeding tube and am very active. I swim a lot, walk short distances with my walker, play wheelchair tennis, and do yoga often.
The only thing I noticed that is harder is doing some yoga poses, due to them adding pressure to my abdomen near my tube site. I also noticed that sit ups are a little bit harder. One thing you might look into is an ostomy support belt. Now, I know you don't have an ostomy, but these belts are very stretchy and will keep the tube firmly against your abdomen, so its not as hard to do exercises (plus, it won't hurt as badly, from what I've noticed). Nu Hope makes a very good belt called "Cool Comfort 4" Support Belt". This belt is wide, breathable, latex free, and waterproof (you can wear it in the shower or swimming pool). Because I also have an ostomy bag, my ostomy nurse recommended this one to me to hold my feeding tube in one place, so I could exercise easier. Hope this helps!
Jessie
- By bbidals
- Posted October 2, 2009 at 8:47 am
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What food are you using with your peg?
I was told to get Fibersourse HN by Nestie Nutrition.
8.45 oz and 300 calories. I find that to keep my stomach from regur, I have to take one can every 2 hours instead of 2 cans every 4 hours, I would like to get a higher calorie count for my peg, My stomach is still too small to be able to hold 2 cans at once. Also, any suggestions on what to use to keep your stomach from getting upset. I am now looking at a mini button so I can get back to an active life. This discussion and Rick makes me feel that I can a life again :-)
- By Juhint
- Posted October 2, 2009 at 12:53 pm
- Report post
Hi Paul!
I am glad you are being positive! Have a good day!
Julia
- By LoraOT
- Posted October 2, 2009 at 5:09 pm
- Report post
Hey Lesley, is your daughter Nina the pretty little ice skater who is the advertisement for the Enteralite pump? If not, that's quite the coincidence!! My daughter's pediatric GI surgeon LOVES that my daughter is an active mover, and also verbal. Most of his patients are non-verbal, and he has learned a lot from her about listening to the symptoms and words of his peds patients!
- By Bootini
- Posted October 4, 2009 at 9:32 pm
- Report post
No problem. Still lifting weights and competeing in cycling. Did a sprint trathlon last March what a blast!
You can do anything you want!
Patrick
- By prettykitty
- Posted October 24, 2009 at 1:47 am
- Report post
I had to wait several weeks before I could exercise when I got my GJ tube initally put in back in Feb, '09 (I had 2 other major surgeries that same week).
When I started exercising again, I took things slow and gradually built up. I lifted 2 pound weights during every commercial when my favorite TV shows were on. I did gentle yoga, and worked on an arm bike at the local YMCA. I also swam a lot. Swimming was good exericse, because it wasn't stressful on the tube site at all and didn't make muscles hurt.
After a couple of weeks, I was finally able to get back to playing wheelchair tennis and racing my wheelchair into town and back to my apartment (to build up my strength that I lost while recovering).
One thing my GI suregon suggested is that I wear a wide ostomy belt that is normally used for people with hernia's near their ostomy site. This helped keep my GJ tube in one spot, so it wouldn't move around while I was exercising (that, and it helped keep my ostomy pouch stay in place better). NuHope makes a good ostomy belt for this.
Hope this helps!
Jessie
- By mldelucchi
- Posted October 26, 2009 at 12:17 am
- Report post
Hello Everyone!
This is my first post, to my friend JackRabbit out there, (who's responding posters I also warmly greet). If you truly fasten your efforts to your goal, that is, of being fit in spite of your disability, you'll be amazed how you'll come along.
I have a J-tube, no stomach, no esophagus and decided one day that, if I had any say in it all, I would never again look or feel like a the frail, bony hospital patient I had been for years. I started lifting weights after my last of over a dozen surgeries, 4 years ago. I haven't stopped since. I took up rowing (sculling to be exact), can regularly run 5 miles several days a week, and am curling 45 pound dumbbells. In reference to other bodybuilders, that figure may not appear stellar, but everyone who knew me then will remark on the transformation.
In regards to that exercise you couldn't perform, I might not know for sure, but I'd say its just a matter of building up more strength.
In regards to receiving enough calories, yes its important and yes its a challenge. Perhaps, even as you progress, its the only perennial difficulty. But invest in formidable multi-vitamin supplements, eventually you'll be using protein supplements, and your learning may take you through some of the serendipitous pains of success and failure. But, believe me, you can traverse it all. Your learning curve to establish the right intake cannot be more difficult than mine if you have a stomach. I do not; and I have reached that point of over-feeding that risks fainting, sometimes at the most importune moments imaginable (driving on a freeway, once). Yet I have never let up, and I urge you to find that deep chord of resolve within you that resounds in unlimited determined efforts towards your loftiest dreams. Bon Chance!
BTW, I couldn't have done it without a few things, only one of which I'll share;
"The Rise of Theodore Roosevelt," by Edmund Morris.
Read it, and react to your troubles the way he did to his.
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