I am being told of new meds on the market that could really help my guy who is 100% Gtube (no swallow/gap reflex) to help manage his crohn's dx~~~alas, the meds are pill and must keep whole to work in the lower gut.
Why must the diameter of the Gtube be so small and standard? I need a tube that has a pill port! I don't care how big that stoma has to be...I want to be able to order a customize Gtube.
I just need some understanding on why if you are missing a limb you have a ton of choices of prothetics, but something like a Gtube has two skin level models?
Who can create me a customize GTube? I see a huge market for a pie port! Let's get Gtubes out of the dark ages..I want colors while we are at it.
ps on our 18th year of tube feeding...and I still feed the bed with the dang med port that flicks open~caulk it!
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I need a Gtube with a pill port
- By DungBeetle
- Posted October 26, 2009 at 12:30 pm · 16 replies
- In Home tube feeding (HEN, enteral nutrition)
- Shared with the public
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- By karenlas
- Posted October 27, 2009 at 6:28 am
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I'll second that motion!! Feeding the bed....hate it. I tape the medport and use an amt clamp to keep the two ends from opening. They work like a charm.
Karen
www.caringbridge.org/visit/trevorlasure
- By DungBeetle
- Posted October 27, 2009 at 12:01 pm
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Just found those amt clamps~how neat are those! I am determined to get my guy a tricked out Gtube even if hire someone to play with silicone molds to create it.
Watch out Bard and Mickey...the Louie button will come with a pill port, choice of color, connecting tubes that can lock on both ends, clamps that don't scratch...and something other that a 60cc syringe to pouring into for heaven sake....
My frustration with medical parts is beyond words and moving to action.
- By momto2girls
- Posted October 28, 2009 at 9:45 am
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Why not just deflate the balloon and put the pill in the stoma? As long as it's not a new stoma that should be able to work for you for now...til you design your own!
There are more than 2 models of skin level tubes, but not a whole lot more, I can think of about 4 brands offhand, and some of those make balloon and non-balloon models, but none with a pill port.
As for the feeding the bed, how about the ext. sets without the med port? SInce I started using those (disconnect for meds, then reconnect) I've never fed the bed.....in about 8 yrs! for Mickey buttons the order number for the ext. without the med port is 0124-24 (or -12 for a 12 inch)
- By DungBeetle
- Posted October 28, 2009 at 12:21 pm
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I have done that~ deflate and use the stoma as a pill port! Alas, the valves would break on me after a few weeks.
Now are those extention tubes the straight bolus end?~~cause that is all I could find with no flipping med port top. Those are hard on my guy's stoma with the night pump feedings. And for day use I have the hardest time venting with that straight connection (full wrap nissen fundo).
I do realize that the new meds are starting to come out in powdered nano pieces or tiny beads that are supposed to be tube friendly...but that dang Mickey is so standardly small~~I don't think a poppy seed can make it thru! We are waiting on pediatric approval for some new powdered meds.
ps in 8 years you have never fed the bed? Score extra for that! My guy has pull the white center out of the mickey button with his night feed activity level.
pss I'm thinking Gtubes that have sparkles in the silicone..or caps that could be bug shaped, truck shaped, can look like jewels..or not. Really just parts that stay together and made for home use. I still have the circa 1993 Mickey that is a full circle. I have two boys on Mickeys~egads!
- By momto2girls
- Posted October 29, 2009 at 2:10 pm
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The order number I listed is for a right angle bolus tip ext tube, the same connection to the button as those darn ones with the med port, but the blue end like the straight bolus tubes.
see a picture here:
http://www.healthproductsforyou.com/products/Enteral-Feeding-Accessories/91 E/Ballard-Bolus-Extension-Set.html
Now, I've fed the floor one time in those 8 yrs bec. I forgot to hook her up, but that doesn't count!! Seriously, if you connect these ext tubes too tight you'll have a hard time getting them undone when it's time....you just connect til it's snug, don't jam the end of the feeding bag in there or you'll never get it undone!
- By DungBeetle
- Posted October 29, 2009 at 2:35 pm
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You are Right! no med port~~sweet! and look at that little bitty connecting tube~~never seen one of those either! And good to know they are tight connectors and a longer length. This is a great find for us...
thanks mom of 2girls~~make my day!
- By momto2girls
- Posted October 31, 2009 at 11:35 am
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Happy to have helped, feeding the bed is almost as bad as dealing with middle of the night puke.....however I do have to admit that our (me and DH) skills at changing sheets, bathing a messy kid and getting her, and us, back into bed in 15 min flat have gotten rusty....I don't think we'd be quite as quick anymore!
- By JenD
- Posted November 1, 2009 at 8:40 am
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I have a j-tube and just crush all my pills and dissolve in water. For capsules I just open them up and do the same. You can also get liquid meds. It hasn't been too much of a problem for me to manage it this way. I hope this is helpful.
-Jen
- By Arthur49
- Posted November 1, 2009 at 1:18 pm
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Hi, I've read a few stories and I have a question, I'm new at having a g-tube. What is a "amt clamp". Thanks, Arthur
- By nikki242
- Posted November 1, 2009 at 2:20 pm
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AMT clamp prevents disconnections and "feeding the bed"
- By DungBeetle
- Posted November 1, 2009 at 8:16 pm
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Hi Jen...until now pill crushing has worked for us too~~well, not for the prilosec when it came out in beads in this gel powder to help them stay suspended (they still stacked up on me).
I have learned about the integrity of the pill...and new meds for inflammatory bowel that are layered to release in the lower gut. To crush these negates the "integrity" of the pill. A steroid med they have offered in whole form causes no side effects...crushed it turns back into a steriod type with the crazed side effects.
So I still am in the market for some modern parts..less parts really, and why I am pouring into a 1 inch diameter on a 60cc really sends me..because it fits the parts....might my child hold and pour his own formula if it was a different shape.
As fun as 60cc water fights are..I just need a vessel to pour into that fits the extention tubes...wider mouth, holds more than 2 oz, easy to hold or hang...I'm just wishing~
- By DungBeetle
- Posted November 1, 2009 at 8:18 pm
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Did you find them? I believe I found them on this site in the parts or something. Better than tape...
- By Alan_Robinson
- Posted November 2, 2009 at 7:54 am
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The problem with pills. I have had a similar problem with Cymbalta that I was taking before I lost my ability to swallow. In my case the medicine lost its effectiveness if not released in its time release form. I had two options. One take a lot more ( and that was very expensive) or live without . I chose to live without and try exercise and non-medication related methods to deal with mild depression.
I think you need to contact an MD Pharmacologist for a consult. I would recommend the chief pharmacist at a major research center, like the Cleveland Clinic, MAO, U of PIttsburgh, etc, but I am not sure if a consult with a ParrmD. would be covered by insurance. My hunch is those of us on tube feeding need some off-label experimentation to get medication right and only someone truly familiar with drugs and their effects and willing to experiment will help.
A side note on the pill port. I think it is useless as well. I found that the cap would always get caught on something and cause leaks. So I immediately cover it up with adhesive tape when I get a new tube. Having wet pants is no fun.
- By Oleyfriend2
- Posted November 4, 2009 at 1:44 pm
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All of the frustrations and suggestions here make me think of two things:
1. For the suggestions: Please consider writing up your tube tips (your successful resolutions to tube problems) for the "Tube Talk" column in the Oley Foundation newsletter. We're always looking for ideas to share, and it sounds like you've got some great ideas going here. You can contact me directly at metzgel@mail.amc.edu. And thanks in advance!
2.For the frustrations: If Oley doesn't have your e-mail address (or if you aren't a member at all), consider sending us your address (and/or joining--membership is free to HPEN consumers and families). Sometimes we are approached by HPEN companies (manufacturers, home care companies, etc) to organize focus groups, and really the only way we can contact HPEN consumers who might be interested in participating is by e-mail or phone. Past participants have responded positively to the experience, and ideally it would give you an opportunity to tell the company what's important to you, the consumer or caregiver. I would think they'd love to have such articulate participants! Again, feel free to contact me directly at metzgel@mail.amc.edu.
Lisa
Oley staff
- By DungBeetle
- Posted November 4, 2009 at 3:32 pm
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I do need to talk to people who modify stuff...or go the off label experimental approach (I like that A Robinson)
I have been talking custom ports and tubes for a few years to our GI ped Stanford team....they talk to both part people and med people. Now the med people should be more invested in the parts...it seems the formula makers are very invested in keeping that standardized GT so small.
Now I am thrilled that the clamps have been modified on the extension tubing...1/2 my drying tubes have curved edges on the white clamps(MicKey). That is very cool.
- By Oleyfriend2
- Posted November 11, 2009 at 12:18 pm
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Oley is currently coordinating an online survey for an enteral product manufacturer. If you're interested, go to http://www.oley.org/Enteral_Survey_11_09.htm
for more information and a link to the survey. The cutoff is 200 respondents (100 adult consumers or their caregivers; 100 parents/caregivers of pediatric consumers) and we are nearing that number, so if you are truly interested you should go to the site promptly.
If you miss this survey, watch for new opportunities on our home page (www.oley.org).
Lisa
Oley Staff
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