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NG Tube Support Group

Tubes: NG, NJ , G and Mickey Button 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!:poo:
 
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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.

:ymad: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.
:yfaint: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 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!
 
Hi everyone:smile:

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.
:ghug:
 
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
 
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.:yrolleyes:

I wanted to find a good link describing the differences between them all.
 
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.
 
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?
 
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.
 
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.
 
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.:eek:
I told her with the g-tube she wouldn't have anything to put in her nose. She's all for it. lol
 
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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
 

CarolinAlaska

Holding It Together
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.
 

UnXmas

Banned
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.
 
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!
 
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.
 
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
 

CarolinAlaska

Holding It Together
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.
 
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.
 
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 .
 

UnXmas

Banned
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!
 

CarolinAlaska

Holding It Together
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.
 
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
 

CarolinAlaska

Holding It Together
Praying here too. You keep cool, MLS. Praying for lots of grace, peace and health for both of you during this rocky time.
 
Clark had his sugery Tuesday and we were able to come home from the hospital yesterday. Everything went very well. He was so brave it brought tears to my eyes. We were able to walk him to the operating room but had to stay outside the door, we kissed him and set him down he walked bravely into the room and the doctor put him up on the bed. He laid down and put his own mask on. Didn't even look at us again. He was in some pain when he woke so they gave him a pain med and zofran for nausea. His pain was managed by tylenol after that. he took a little while to talk to us after but then returned to his happy self. We were taught very well at the hospital on how to care for the peg tube. We have our emergency kit with us and pray we won't need it. We will go back in at 8 weeks to get the MIC-KEY button placed. So far so good. The experience was alot better and easier than I had anticipated. I hope it goes as well for others. Good Luck :ghug:
 
The emergency kit is just in case the tube gets pulled out. They have everything you will need to place a foley catheter to keep the hole form closing up before you get back into the doctor. We were told to take ours everywhere we go. Even if is to run to the gas station.
 
Hi Ethan Clark
Glad the surgery went well
Lucy had her mickey fitted on Tuesday
Evening the they fitted both the tube and
Mickey at same time for Lucy x
Hopefully Lucy will be home in day or so.
 
Thanks Hun same to Ethan.
How did you find the whole procedure?
Did how you finding the feeding
Now ur home?
Will u have a nurse from community come out
To your home? That's what our hospital
Arranges.
 
So good to hear both surgeries went well.:ghug:

How long did your stay take?
We're they able to take the same amount of formula per hour?
 
Carolin it went well thanks
The fitted tube and mickey at same time
It save less stress of coming back for Lucy
Emotionally which I think is better.
As for pain when she first came back she was
In some pain but pain med did the trick
The next day she was up playing.
 
Farmwife Lucy is still in as
They want to increase her formula
As she is still very under weight.
Hoping to be home may Saturday or Sunday.
Usually your home quick depends on
Child, the nurse said usually ur in 24- 48hrs
Depending on each child.
Have you decided if grace will have a mickey done?
 
Yes MLS,
We just got back and on the 30th will be her surgery for a mickey button.
Their hoping as am I that she will be in and out within 24-48 hrs.
My ONLY (ya right ) concern is the fact that Grace's GI track does not move fast.

Will they demand that she have a bowel movement first before leaving the hospital?
 
Hello All- Sorry I haven't gotten back sooner, I took some time off work to stay home with Clark for recovery. I felt the procedure went very well. The childrens hospital we go to is absolutely the best hospital ever and Clark was taken care of so well. The feeding went well, they started out at a low dose and were able to up it to 100ml per hour by the middle of the night. We were offered a nurse to come out but because we had already been doing the feedings through NG at home we decided that we didn't need one. We only had to stay 24 hours because Clark was doing so well. Clark also wasn't required to have a BM before we left. I am sure that if differs with every hospital. While the process and pain was better than expected it has been really hard to clean the stoma at least two times a day. While the process and teaching was easy enough Clark is really scared and screams, cries and fights everytime we have to change and clean the dressing. He isn't in any pain and all of his symptoms have completely went away again which is so great but I do think that he is having some psychological issues with everything. He is so emotional about everything. Poor little guy. I am hoping with time it improves or I will contact the hospitals social services to get him some therapy to help him deal with everything.
 

CarolinAlaska

Holding It Together
Sorry I haven't been around in a few days. I'm sorry too that Ethan is taking his new stoma so hard. It must be hard on the little guy to understand why this was done to him. My 13 yo understands it, but she is frightened of any surgery too. I hope he gets used to it quickly!
 
Ethan Clark
Lucy is the same she is not liking it at all
She doesn't like new things and change
When she see's it she tells me to take it off.
I'm trying to get her a tuby bear made
It see if it helps her.
 
Well Grace will be getting her g-tube on the 30th. I also wonder how she'll take it.
I know it freak her out if I tried to take her tape off her face.

I can't wait to get this done. She's naturally weening off drinking her formula. With no n-g tube it's me spending most of the day telling her to drink.

Any advice on what it's like or advice you wish you were given about the g-tube and or care of the site.
 

CarolinAlaska

Holding It Together
For a little humor, I'm posting this art that Jaedyn is working on: a castle with a working drawbridge (has a lever pulley system) made of her Ensure cans!

 
FarmWife,
Our hospital was wonderful with explaining everything. I had to read through a packet and watch a movie before I met with the nurse to go over how to care for the site so I already knew all the information. It is pretty easy to remember too. Clark just gets scared when I clean it. I am excited that at the 2 week mark(which is tomorrow) he can shower and we only have to clean it every other day. It will make it alot easier. Clark isn't scared about having the tube, he was a littel shy about it at first and didn't want to show family but now he shows everyone. I would talk to family about how to react though so they don't say anything that will hurt their feelings. My 7 year old nephew saw it and his mom said "oh look Clark is showing you his tube doesn't it look good" my nephew got a horrified look on his face and said "No, that looks horrible" He was just being honest and luckily it didn't even bother Clark but some kids might be hurt by that. I am excited about getting to have the MIC-KEY button put in at week 8 as the tube is very bulky. I am not sure why some doctors do the tube first and others just insert the button but it will be nice to do the switch. Give Grace a hug for me. I hope it goes well and if you have any other questions just let me know. Good Luck:ghug:
 
Hi, all,
I'm not young but have had crohns since young. I too have a PEG and after 9 years I have to say it drives me insane. It does the same for my dietician who has to change it regularly. Yes, its got crohns in the tract!!! its painful. My poor dietician needs to play tug of war with taking it out. it now takes around 20 minutes to change instead of 2 mins initially. it also got a bug in it from the outset, and I was so doubled over. It even took 18 months to settle down. I sincerely hope that you newbies to the PEG have no issues. I think children take things better and heal better anyhow.

I'd have stuck to naso gastric tube if I had know the pain. Please look after the kiddies with PEG tubes.

good luck.
 
We hit the 2 week post op mark yesterday and letting Clark shower was great. I did notice some granulation tissue that has me freaked out so I am calling the doctors office as soon as they open. Other than that things are greatly improving, even the cleanings are going better. If anyone else has information on how granulation tissue was treated please let me know. :ghug: to all!!!
 
Hello everyone,

I'm happy to finally have a few minutes to check-in and see how things are going for all of you.

My son (Gus) was dx with Crohn's when he was 6 yrs old, he is 13 yrs old now. We've been through the "staircase" of Crohn's meds. But all they were able to do was control his pain and his disease to a degree.

He never had an NG tube or a PEG, but he has had a G-tube (Mic-Key button) and/or G-J tube since Jan. 2012. The G and the GJ tubes have been effective in helping Gus gain weight at a steady rate. We use an elemental (amino acid) formula called ElleCare. We run the feed over night. He goes through his day as usual, including meals. He likes the tube for a few reasons. 1) he gets the nutrition and calories, even when he doesn't feel like eating. 2) liquid medicines can be administered there, so he doesn't have to taste them. 3) contrast for CT's and MRI's can be administered there too! He was never able to drink the contrast for full effectiveness of the tests.

In Feb. 2013 we added a PICC line for TPN nutrition. His strictures became so severe, that we needed to bypass the digestive tract completely (we put the formula infusions on hold). The TPN has been excellent for weight gain, energy and pain reduction.

I never felt any trepidation regarding the G or GJ tubes. They were placed via outpatient surgery and he was fine within a few hours. Operation, care and maintenance has been very simple.

The PICC line (Peripherally Inserted Central Catheter) was a little more scary. Anything that is placed so close to your child's heart is scary! I had a hands-on lesson that lasted 4 hours before we left the hospital. The first couple of days were a little shaky, but then I was able to find a rhythm with it. We run it overnight, same as we did the formula, so he can go about his day unfettered.

Gus was even able to ski four days over spring break with both the G-J tube in AND the PICC line in. We took all of the supplies with us...including the "emergency kit" for the GJ-tube and a complete dressing change kit for the PICC line. We didn't need any of it and he had an amazing time!!

Two and a half months into using the PICC line we hit a very serious bump. I was always able to infuse the TPN into his line. We discovered that Gus was prone to "clotting," meaning we could not draw blood back out of the line. Declotting is not a big deal, if you are at a clinic that is prepared for that process. Our GI and hospital are located about 2 hours from our house. We discovered that our local clinic is not equipped to unclot PICC lines. This is where it gets dicey...

Even though we could work around not being able to draw blood through the PICC line by doing regular arm draws, there were hidden dangers in leaving the clots. The small clots became a haven for bacteria and Gus ended-up with a bacterial infection. Actually, he went into septic shock. We are fortunate to have a wonderful medical team. He got the care he needed quickly and came out of it fine.

We will be working with our local clinic to help them establish better PICC line procedures for pediatric patients. TPN is a very effective form of providing nutrition and isn't difficult to administer, but it is important to know the risks and dangers and take all of the necessary precautions. I have one friend with Crohn's who (successfully) had a PICC line in place for eight years!

Gus has just had surgery to remove the stricture. With any luck, he will be able to eat like a regular AND absorb the nutrients normally...no PICC line, no G-tube feeds! Time will tell.

I look forward to exchanging information with you as time goes on.
 

CarolinAlaska

Holding It Together
Thanks for the update, VTF. Sorry I don't know much about granulation tissue in Gtube lines, but I do know that they recommend not using hydrogen peroxide to healing open wounds because it breaks down granulation tissue... Let us know what your doctor's office says. You can also talk with a nurse at your surgeon's office or in a wound clinic for advice. Can you show us a pic of what you are seeing?
 
Carolina-The doctor office presribed him some steriod/antibiotic cream to use for a few days. Hopefully we caught it early enough so that we don't have to use silver nitrate to burn it off. I have read some pretty bad cases where the poor kids are in a lot of pain afterwards. I did also read that tee tree oil has been used by some as well. I will try that before I let the doctors burn it. Clark is alread so scared I really don't want to traumatize him more. Because the tissue is under neath a plastic disk I can't get a picture of it. It is raised, red bumpy tissue. he has no signs of infection so that is a good thing. Crossing our fingers that this works.
 
Hi all.
Grace had her g-tube put in on Tuesday this week. We got home on Thursday.
She 's doing great. She walks bent over like a 90 year old woman but she always has a smile on her face. We ended up staying longer than I wanted because her pain was bad. Her Surgeon put two visible stitches OVER her button to secure it for 2 days. When her took the stitches out on Thursday she was a different kid.

The hospital staff was GREAT. We didn't have a bad or rude nurse and every one that works there was always asking us if we needed anything.

Her feeds are still on the low side. We hope to work up to 120ml an hour soon. One step at a time.

Her home health care nurse came out this morning and she says everything looks great. I pray it continues this way.
 
Farmwife- I am so glad to hear that Grace's expreience was a good one. I have been wondering how she was doing. We have Clark's feeds at 120ml an hour right now. I may up it a little more in the next few days. He is doing great besides the cleanings and granulation tissue. i hope things will continue smoothly with Grace too :ghug:
 
Hi all glad everyone is doing good
Lucy is also on 120ml an hour
The cleaning is much easier although
She is still upset seeing her mickey
I think it scares her but she is much better
Than she was.
I'm so happy I made this decision to put
The mickey in as it is much easier than the
NG tube. Love to u all
 
MLS-Clark does 1250ml over night. We do 1 feed but I start with 3 cans and when that runs out I flush the tube and do the remiaing 2. I really want to see if I can up the feed time so that I won't have to wake up every night to do the switch. I just raised it to 120ml without any issues. I haven't slept through the night in a year and a half:ybatty: Sleep deprived and crazy :hallo3:
 
Aw Hun I know lack of sleep ain't good.
Lucy has 3-4 feeds though the day then
The night feed awell which runs most of the
Night I tend to start it late so I don't have
To get up early in the night .
Hugs to all
 
MLS
Grace can drink 2-4 juice boxes (EO28 Splash) by mouth a day. So what's left (2-4 juice boxes) go into her tube. We start her pump at 4 or 5 pm and try to get it all through before bed. That way I'm not up at night trying to figure out why her pump alarm is going off (I feel for ya EthanClark). Our goal is to do bolus feeds but we're not even close to that yet. I can get her pump to about 120ml an hour right now.

A question to all the g-tubers (new name).
Did you or your kids have a lot of leaking around their mickey buttons? When did it start? Right aways or a couple days later?
 
Sounds like everyone is making their way with the "equipment."

We usually just clean the MicKey site with soap and water. That seems to do the trick very nicely.

Our GI doc applied the silver nitrate once, in the office. It was not a big deal at all. The applicator looked like a long match stick. He rubbed it over the site and everything looked much better very quickly. No pain or discomfort at all.

Also, placing a gauze patch around the site can help reduce rubbing while the site is healing over.

:)
 

CarolinAlaska

Holding It Together
I'm glad there are several of you in the same boat with the g-tubes participating in this site and can help answer questions.
 
Farmwife,
Clark's tube leaks a little daily. We are changing the dressing once a day now. I let the shower do the cleaning so that I don't traumatize him then dry the site well and apply the steroid cream. It doesn't seem like the granulation is getting worse but it doesn't really look any better either. It has only been 4 days so I will just keep an eye on things. It does make it hard to get a good look because of the plastic stopper located on the top of the G tube.
 
Question for all.......with g-tube.

Did blood show up on around the stoma? Like 7 or 8 days LATER?:eek:

Yes, Grace's nurse is coming over this morning!:smile:



:ghug:
 
Farmwife, a little bleeding is normal. Clark had some bleeding when the granulation tissue started forming. I hope that isn't what is happening to Grace. Good Luck with the nurse. :ghug:
 
lol, 9 and a half years down the line and yes, mine still has some amount of blood too. good luck to all the kiddies with PEGs.

What is a Mickey device? I have a low profile peg. (corflo cubby)
 
After Gus' 21 days in the hospital...we found a new use for his Mic-Key button. We used it as a gravity drain post surgery! He was able to come home with it that way and it gave us an idea of how his bowels were recuperating from the surgery. Docs finally gave him permission to eat again (after five weeks)! We are starting to use the Mic-Key button to run feed again at night too. Will be a trade off between going off of the PICC line and TPN back to the g-tube and elemental nutrition.
 
I'm glad your home and I hope and pray Gus can get back to normal soon.
:eek:I'm serious you look just like my older sister. I was going to call her and say look at your pic BUT.....she might get too excited at the idea of being adopted.:lol2:
 
I found a new love for the g-tube.
Venting!!!! Grace is having a lot of acid reflux and the GI said vents the tube 3 times a day.
It works like a charm!!!!
 
CarolinAlaska,

Gus genuinely LOVE his g-tube. He has had both the Mic-Key button and a G-J tube. It takes the "pressure" off of him to eat when he doesn't really feel like it. His strictures are illusive, so contrast scans and MRI's are the best test we have to locate the problem(s). Gus HATES to drink the contrast material. In fact, he just won't and the tests have had to be cancelled or results minimal because of it.

Running the feed while he sleeps is not a problem. He is "free" from the pump all day for school and his regular activities.

He does have a little "drainage" at the site. I am told that it is not unusual. We have become pretty accustomed to it. If the area is wet, he just wipes it with a clean tissue and moves on. That part was a little strange at first. There were many "reports" to the doctor (early on) because of it. Now it is no big deal.

He can swim all summer without any worries. He can ride roller coasters. He can do everything he always did before the tube...except wrestling. He isn't comfortable wrestling (even with a protective belt) with it in.

I hope that helps.
Cheryl
 
Yes, that's the biggest thing for me. I can feed Grace even when she doesn't feel like it. Her nasty tasting meds can go in her g-tube.
We do bolus feeds, most of the time now. If she goes down hill, I'll start doing longer feeds.
 
Giving Lucy the mickey has been the best thing
Not only for the feeding, but also the meds,
And yes as FW said venting is really good
As Lucy suffers badly with gas, as before
The mickey gave her a lot of pain and trouble.

Carol how is Jayden doing with feeds?
I'm sure if you decide to go ahead with
Mickey you and her will find it a lot easier.
Hugs
 
Hey, I know I only posted like once on this, but I feel awkward being subscribed to this now as I've got my Ng tube out, but reading your posts, I didn't realise sometimes you get g tubes and stuff done as a permanent thing? I had my tube for the six week diet.. I didn't realise sometimes you need them for other problems? Sorry if im being dumb..i dont know much :/
 
No your not being dumb Ki3. Grace needs her g-tube full time because of her Eos disease and being so young. She still have a long road and the top priority has to be to keep her growing. So the g-tube is being used.
HOWEVER, a word of caution, if you have crohn's you do run the risk of crohn's flaring down the road where the g-tube was put. Still we felt it was worth the small risk.
 
Hey, I know I only posted like once on this, but I feel awkward being subscribed to this now as I've got my Ng tube out, but reading your posts, I didn't realise sometimes you get g tubes and stuff done as a permanent thing? I had my tube for the six week diet.. I didn't realise sometimes you need them for other problems? Sorry if im being dumb..i dont know much :/
Ki3,

It's all a learning process, so don't knock yourself. Ultimately, it's all about nutrition...giving each person the best opportunity to receive the most nutrition possible.

As far as "permanent"...although the g-tube is placed surgically, it can be removed at a later date with little fuss. Though, I have to say that Gus does not want to have his g-tube removed. Even if he weren't using it for nutrition, he would want to keep it for meds and contrast for the CT/MRI scans. :emot-dance:

Even Gus' PICC line (use to administer Total Parental Nutrition) had be inserted on an outpatient basis and can be removed when that form of nutrition is no longer necessary.

Cheryl
 
Oh ok thanks. They said to me about nutrition when I came off my tube and I'm meant to drink one to two drinks a day...but I dont.. Lets just hope they think I weigh enough so they dont give me a tube!
(P.S- Cheryl, I know it sounds weird, but Gus is lucky to have a PICC line, I asked about it when I was going to start remicade(but never started) and they wouldn't let me, they said I had to have a port because my veins are difficult. I really don't want a port.
 
Ki3,

Gus did Remicade infusions for a year and a half...no port or PICC line. The just put the IV in when we arrived and removed when we were finished.

I'm sorry to hear your veins are going to make the process more difficult than need be.

Take heart though. Remicade was the first medicine that really helped us manage Gus' pain! Unfortunately, it didn't do much to halt his disease. Still working on that. I'll say a prayer for you that you have wonderful success with Remicade.

You'll have to share your port stories.

Take care.
 
I get that a PICC can cause inflammation but I thought a port would too? They halted my remicade and put me on a liquid diet (worst 6 weeks of my life) and it kinda worked... But my symptoms are slowly creeping back and we are hopefully going to discuss remicade. Thanks for the info. If I do start it, I would have to have some line in as sometimes its taken 7 jabs to get a canula in. But I've heard terrible things that can happen with ports and although there are still risks, a Picc seems less risky :(
 

CarolinAlaska

Holding It Together
Hi All. Thanks for the info. Jaedyn is doing okay. She seems back to how she was at the time of her diagnosis - no appetite - she has stopped gaining at 83 lbs (lost three of what she'd gained, then gained one again). She drinks about 1800 calories a day (we reduced it a little hoping that she would gain a little appetite - was doing 2250) with a mixture of two drinks to make it more palatable. It is work to get it into her. She is pretty adamant that she doesn't want the G-tube/MICkey. I'm going to talk to her ped this week about trying an appetite enhancer called Periactin (its an antihistamine that increases appetite and helps sleep), but I'm not sure how she'll do. Meds usually give her a lot of side effects. She was doing her best on the peptamen junior alone with the NG tube, but she definitely won't go back there. I'm hoping she'll meet some kids at camp who have a MICkey button and see that it isn't so bad... She does get gas pains. Next time she has that, I'll tell her about the release valve she could have with a MICkey.
 
Gus had his PICC line removed this week. Ah, he is soooo happy! He can swim and shower without any thought or precautionary preparations!.

The PICC line definitely was a blessing and served it's purpose well. Still, we are happy that he is much improved after his surgery and no longer needs that kind of supplemental nutrition.

He is not supplement free though. We are back to the G-tube feeds. If he continues to eat well on his own and gains weight, the supplements will be taper down too.

It's a great way to begin our summer break! Happy summer to all of you as well!!
 
:eek:So it happened, Grace's g-tube got pulled out when our puppy got tangled in her line.

So I thought I write about the experience for future reference of those that follow.

The reason she had to go to the hospital was because her stoma is new and they wanted to make sure "things looked right".
However, once the stoma is healed, the button change will happen at home.

Her whole tube was pulled out. So after the:awe: and:runaway: I called the Surgeon's office.
I talked to a wonderful nurse on the phone, who told me to
1 get her emergency kit out.
2 open the lubricant
3 open the Foley catheter
4 Fill syringe with water to fill balloon
5 have her lie on a flat surface
6 lubricate the end of the catheter
7 gently slide catheter into the stoma and into the stomach,
make sure balloon is fully inserted into stomach
8 when inserted, fill balloon with appropriate amount of sterile water using the valve on the on the catheter.
9 check to see if stomach content is coming out. If not make sure the balloon is in the stomach.

After this was done the nurse said hold tight and let's see if you local hospital can put in the g-tube.
Thankfully the local hospital could.
Within a few hours Grace was in the operating room. I was able to attend.
The surgeon used a live x-ray to place the button. Grace was awake and had no sedation.
We were told they could sedate but since Grace let me do the Foley catheter I knew she could handle it.

The whole thing was 10 minutes or under.
We got to head home right away and Grace is doing good with the new tube.

We now will have an extra button on hand when emergence happens or it's time to change the button, which is every three months.

Please remember.............................................................
Stay calm
The stoma and hole in the stomach close up once the g-tube is pull. Nothing is going to leak out!!!!
If you haven't been taught to change the button OR your uncomfortable doing the change, PLEASE CALL THE SURGEON'S OFFICE FOR HELP.
Have the child lie flat and IF they can suck in their belly a bit that would help.
Make sure that you can get the stomach contents out through the g-tube before putting liquids through.
 
Oh, FW, and poor little Gracie,
How brave... you 'all' were. Did poor little Gracie cry? must admit they can be painful when tugged on, and to the degree whereby they come out! omg!! Well done on coping. I have a spare tube at home too. I have know the balloon to burst and out it comes.
I hope it goes well for the future. love the emoticons used, tee hee, I bet!
p.s. my fave one is where I accidently tread on my tube and try and walk forwards. ouch! if only it didn't happen so often, but hey, i'm am ultimately clumsy.
 
I guess the worst part of in the operating room waiting for the surgeon.
It got her worked up a bit lying there but all the nurses were great.
They move over a TV console so she could see everything.
She's the kind of kid that want to know what's going on.
 
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