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03-15-2013, 04:46 PM   #1
YoungLava1405
 
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Tubes: NG, NJ , G and Mickey Button Support Group

About this Support Group

This is a open forum for people who are using or know of someone using any type of feeding tube for Crohn's or Colitis!

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andresmom, angalittle, ben's rn's Avatar ben's rn, BestSisteronEarth, coolbeans's Avatar coolbeans, dchad57's Avatar dchad57, drbart86, Earthsoul's Avatar Earthsoul, Elliewiththebadbellie, EthanClark's Avatar EthanClark, Farmwife's Avatar Farmwife, iansmom, ilinguiti, lente, lubnaexperts, maaria, megngeiger, MMo's Avatar MMo, Mylittlesunshine's Avatar Mylittlesunshine, peluchde's Avatar peluchde, ronroush7's Avatar ronroush7, serenaindge1987, Spooky1, tracyandkevinp's Avatar tracyandkevinp, UnXmas's Avatar UnXmas, vtfamily's Avatar vtfamily, YoungLava1405

Last edited by YoungLava1405; 04-11-2013 at 04:30 PM.
04-11-2013, 05:02 PM   #2
Farmwife
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Thanks so much for creating this support group.

Here's a link discussing the formulas used for Enteral/Elemental Nutrition (EN). Press HERE!
I'll be adding helpful link as time permits.

My Grace is 4 and is on the n-g tube. She's been on it for over 3 months.
We love the fact that no matter how ill she gets we can make sure she has the nutrients she needs.
We've had very little problems with the tube. She has to ware hers 24/7. That's because of her age.
The only problem we're running into is her sinuses. Their starting to get sore and bleed.
Also Grace has EGID which means she'll need a tube for a LONG time. BUMMER!

Because to these two things we've decided that to would be in her best interest to have get get a G-Tube.
We're meeting with the Surgeon on the 19th of this month. They say the surgery will be the week after.

Needless to say I hate the idea of the whole thing. I
hate that she has this and I hate the fact she needs a feeding tube of any kind.
However I know it's needed.
I'm looking forward to hearing from others that have gone through the surgery and what the recovery was like.
__________________
I'm mom to............... Little Farm Girl 8 yr old
Ibd (microscopic)
(12/28/12),
dx Juvenile Arthritis
(12/13/13)
dx Erthema Nodosum
(8/13/14)
Bladder and Bowel Dysfunction
(10/14/13)
Ehlers-Danlos Syndrome dx (1/26/17)
Remicade started on (9/8/14)Every 4 wks
Azathroprine started on 10/9/15
EN/EEN- since (1/12/13)
Past Meds- LDN, Humira, Pred, MTX, Sulfasalazine
04-11-2013, 07:03 PM   #3
YoungLava1405
 
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I'm so sorry to hear about your daughter this disease is horrible sometimes but we all just battle through and I'm sure she's a little trooper and will battle like the rest of us! As for me I'm 17 have crohns colitis since I was 10 and have been on pretty much every med in the book except humira! I am doing tube feedin and have been doing tube feeding for about a year and has kept my crohns at bay pretty much ( thank god) so far so good with the tube a little irritation in my nose but other than that pretty good! I put it in and take it out every day and night so it doesn't really bother me look Foward to hearing every bodies story!
04-12-2013, 05:13 AM   #4
Mylittlesunshine
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Hi everyone

Lucy is 3 (4 at end on month) she has recently
Been diagnoised with crohns.
She has been on EN for over two months now
And I've found no problems with EN
But because she needs EN long term
For her weight as she is very under weight 11kg
And and controll symptoms,
We have decided to go to have Micky button
Fitted, she will go into hospital on 15 th April
And have fitted on 16th
I am worried but I know this is best thing for her.
__________________
Currently on EN
Neacate LCP
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Iron
Dalavit
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04-12-2013, 08:21 AM   #5
ben's rn
 
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Hi Everyone,
Hi Farmwife, thanks for sending me the link to this support group. I hope I can be a resource as my son Ben started out with an NG and had this taped to his face for about 9 months....the reinsertions were terrible and he had to be sedated for that! (THe hospital where we started in the beginning wasn't very supportive with my choice but I felt it was a no brainer to choose tube feeding vs. Remicade!! They had NO process in place for EN and decided that we needed to 'swap the NG tube out monthly' which, isn't necessary) Long story but feel free to ask me more about this.

His G-tube was inserted in Dec. of 2010 at Cincy Children's - I decided to transfer there when the local doc refused to place one. He felt it was contraindicated in gastric Crohn's despite the fact that there is research that disputes this. I knew EN was the treatment of choice at the time for Ben as he was in remission after the first month. He was doing 90% of calories at the time...the Columbus doc thought this would increase the chance of compliance...but, from what I had read in Margaret Oppenheimer's book - Beat Crohn's - Getting into remission with Enteral Nutrition, I knew it was supposed to be 100% of calories and no food. Ben was lucky that it worked! The other thing that was really bad was that the C-bus doc prescribed Pediasure EN, which Ben has been on all this time, and I only just realized that it contains Carrageenan, a contraindicated in IBD food additive. Always read the label on this stuff, docs don't always know best!!

Ben still has his G tube, I am trying to find a safer formula right now. He has done 50% - 90% over the past 3 years, and it has definitely helped him gain/maintain weight and grow Ben was 7 when it was first inserted and is now 10.

Feel free to ask questions, share concerns, etc. I am happy to help!

Beth
04-12-2013, 09:16 AM   #6
Farmwife
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His G-tube was inserted in Dec. of 2010 at Cincy Children's - I decided to transfer there when the local doc refused to place one. He felt it was contraindicated in gastric Crohn's despite the fact that there is research that disputes this.

ben's rn


Thanks Beth,

Do you have that research?

I was wondering and fearing...what if she has Crohn's in her tummy? Then this surgery might make it worse in the future.

Did he start out with the g-tube of did he have a peg at first?

I'm still trying to learn the different kinds of tubes.

I wanted to find a good link describing the differences between them all.
04-12-2013, 09:34 AM   #7
EthanClark
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Thank you FarmWife-Clark had an NG tube for 3 months starting in December. He gained 8 lbs while on it and all symptoms went away within a few days. He has had juvenile arthritis, headahces, daily fevers, tummy pains, weight loss and just being plain miserable. Everything went away. recently his 3 months were up and we tried taking the tube out and wanted to keep him drinking 3 can of peptamen jr a daily to see if that would hold remission. The little stinker wouldn't drink them and WAM!!! It all came flooding back rather quiclky. He lost 1lb 1/2 in a week, joint pain, fevers and tummy pains all coming back. He will have a G tube placed on the 16th of April but we decided to re tube him last night to see if we can halt the flare before surgery. We will probably pull him completely off of foods again and keep him strcitly on EEN for a long time. I have loved knowing that he is getting all his caloric needs fufilled and it was amazing to see him so happy that we will do whatever it takes to get him back there.
04-12-2013, 09:38 AM   #8
Farmwife
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Stinker....hmmmmm......ya that's a good way to put it for these kids!

How did it do last night?

How is the surgeon going to do the surgery?
04-12-2013, 09:54 AM   #9
EthanClark
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It was rough putting it back in. Luckily I was able to get this one the first time. Last time it took 5 tries. He seems happ y about the fact that he won't have to have another tube put back in. The surgeon will go in with a scope to find the best spot to put the tube. Then shine a light through his stomach, they will poke a needle with a guide wire through and the scope will grab it and pull it out of his mouth. They attach the tube and pull it back into his stomach where they will place it. It will be the PEG tube first and then after 8 weeks they will put the Mic-key button in. We go in Tuesday and should get to come home if everything goes well 24 hours after surgery.
04-12-2013, 10:06 AM   #10
YoungLava1405
 
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I'm almost positive the difference between the tubes is where they are positioned in the stomach or if they need to go further into the intestine. For me, being 17 I rather put the tube in and out every night because its just more convenient but for a younger kid I would imagine it to be scary and the surgery probably a better option.
04-12-2013, 10:11 AM   #11
Farmwife
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Ya, I know quite a few teenagers would rather put it in at night and take it out at night!
You guys are awesome! I don't think I could do it.

Grace is so young, she doesn't care and it doesn't faze her to have it taped to her face.
Now the insertions...that's another thing.
I told her with the g-tube she wouldn't have anything to put in her nose. She's all for it. lol

Last edited by Farmwife; 04-14-2013 at 04:13 AM.
04-12-2013, 10:21 AM   #12
YoungLava1405
 
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Yeah especially cause you are the one inserting it for her I'm guessing? Cause i didn't like when the nurse first did it but when I tried myself and got the hang of it it was so much easier cause I can feel where I'm putting it and stop if it hurts so if you are worried about it always think it won't be forever! When she gets older she will probably be able to put it in herself! And think of the alternatives, medicine sucks haha this is so much better
04-12-2013, 02:04 PM   #13
ben's rn
 
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Hi Farmwife, I didn't find the exact papers that I found back then, but I was worried at the time because Ben has gastric Crohn's (which has been in remission since he started EN) - and his first Gastroenterologist said he would never place one in Ben. He has not had any issues

http://adc.bmj.com/content/76/2/141.full
http://www.ncbi.nlm.nih.gov/pubmed/9177515
04-12-2013, 05:48 PM   #14
EthanClark
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Thank you Ben's RN. Those were interesting studies. Eases my mind a little.
04-14-2013, 01:24 AM   #15
CarolinAlaska
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Jae had NG tube for 5 weeks. She ended up having to be sedated too. She will need supplemental formula for a long time, unless she gains an appetite and can suddenly eat and catch up weight... She won't try doing the NG insertions again, and we have also been told that the tube needs to be changed every 4 weeks, so we've had to go back to taking her supplements orally. She has done this for about 10 days and is keeping up with her 8 cans a day for now, but I can see it starting to be a burden again for her... Our next option will be for her to get a MICkey if she can't keep up with the drinking or if she starts to not tolerate her current formula (1 can Ensure with 1 can Peptamen Junior mixed four times a day - and yes, I know about the concerns with carageenan, but not much I can do right now about that unless we go with a MICkey).

BensRN, I think Peptamen Junior doesn't have carageenan... I don't see it on the label anyway.

Thanks, Farmwife, for inviting me to this support group. I am going to invite Marni's Mum too, her daughter has a MICkey.
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J's story: http://apathnotchosen.blogspot.com
*J, 18, Crohn's diagnosis 1-2013 (age13), controlled with 6MP.
Osteoporosis, Scoliosis, EDS, Asthma, Lymphedema, Epilepsy, Hla B-27 positive, gluten intolerant, thrombophlebitis, c.diff, depression, anxiety postural tachycardia/POTS and multiple food allergies.
04-14-2013, 04:12 AM   #16
Farmwife
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Carolin
When will you make the decision for Jae to get the Mickey button?
04-14-2013, 07:49 AM   #17
UnXmas
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I don't have a feeding tube but I will be watching this group as it's looking more and more likely I will get one. My body mass index is only about 13 now. I've been trying to gain since the end of last year, but haven't managed it, though I've not lost any more either.

I really hate the idea of having a tube inserted. I have a tendency to faint at the slightest invasive procedure. I'd hope to be sedated for it. I'm also not sure how it would work for me as it seems it's a short term solution, and I've had trouble maintaining weight for as long as I've been ill, although never to the extent that I do now.

I'm really fed up of having to force food down all the time and worrying about how I'm going to get enough calories in, and am hopeful that a feeding tube would mean my weight and eating wouldn't weigh on my mind so much.
04-14-2013, 08:15 AM   #18
YoungLava1405
 
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How old are you unxmas? I'm 17 and I was scared out of my mind at the thought of putting a tube in but it truthfully isn't bad at all and I now do it every night and take it out every morning! I'd be glad to answer any questions or just talk!
04-14-2013, 11:48 AM   #19
Farmwife
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What color should it be????

I just had to pull Grace's n-g tube because of her virus.
The pressure from her sinus cavities was to much for her.
She's had this tube permanently in for about 3wks.
When I pulled it, it was red/brown at the end for about 4 inches. Is that normal?
This has happened every time I pull it.
04-14-2013, 01:11 PM   #20
YoungLava1405
 
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Mine is usually discolored when I pull it out and I only have it overnight so depending on what she drinks during the day and the stomach acid I would think would discolor it you could ask the doc about it but I wouldn't worry too much
04-14-2013, 07:38 PM   #21
Farmwife
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UnXmas welcome aboard.
Have you tried drinking the shakes?
04-14-2013, 07:48 PM   #22
CarolinAlaska
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Jaedyn's tube was reddisish brown when it was pulled.

We have put off her Mickey surgery indefinitely for now, but already drinking 8 cans a day is getting tiresome to her. I still imagine it will likely happen in the next 3 months. Jae just needs this time to see for herself why.
04-14-2013, 07:51 PM   #23
Farmwife
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That's good to hear about the tube.
I agree with you Carolin that Jae needs to see the need.
She's old enough that forcing her will only cause resentment.
04-15-2013, 04:22 AM   #24
Mylittlesunshine
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Morning everyone
Lucy is going into hospital today
And tomorrow will go down to surgery
To have the mickey button fitted
I have mixed feelings about this
Although I know she needs it and is
Best for her, I just feel so bad having
To put her though the surgery .
04-15-2013, 07:59 AM   #25
UnXmas
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How old are you unxmas? I'm 17 and I was scared out of my mind at the thought of putting a tube in but it truthfully isn't bad at all and I now do it every night and take it out every morning! I'd be glad to answer any questions or just talk!
Thanks so much. I'm 28. I know there's no reason I should be fainting at these things after so many years of hospital tests, but I can't seem to help it!

All the young kids mentioned on this thread must be so brave to go through it all.

UnXmas welcome aboard.
Have you tried drinking the shakes?
I'm drinking between 2 and 4 Ensures a day. The trouble is they seem to fill me up too, so the more I drink, the less I feel like eating my normal food.


Mylittlesunshine - I hope all goes well!
04-15-2013, 11:43 AM   #26
CarolinAlaska
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Morning everyone
Lucy is going into hospital today
And tomorrow will go down to surgery
To have the mickey button fitted
I have mixed feelings about this
Although I know she needs it and is
Best for her, I just feel so bad having
To put her though the surgery .
Thinking of you and Lucy today. Let us know how it goes.
04-16-2013, 07:52 AM   #27
Ki3
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Hey I have an NG tube while im on a liquid diet so its not a long-term thing (luckily!) I was just looking through here and wanted to say, Mylittlesunshine, hope it goes well, let us know how it went xx
04-16-2013, 08:22 AM   #28
Mylittlesunshine
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Hi K13
Welcome to the forum
04-16-2013, 08:23 AM   #29
Mylittlesunshine
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Hi everyone
Just to update you all
Lucy's surgery is scheduled for around 4.30pm
Today will try an update all when I can x
04-16-2013, 09:02 AM   #30
YoungLava1405
 
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Good luck! Best wishes and prayers are with you!
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