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NG Tube Support Group

Oh bless her. I'm so pleased she got through it easily, but it is a nasty experience. I had a peg come out so had to go to hospital. Its far away so it closed up. then they sent me home, then rebooked for another surgery... and.... omg, they didn't have a tube for me! I woke up with a male catheter in my peg hole and had to go home until they were sent one. And this was one of Europe's biggest hospitals. Amazing.
 

CarolinAlaska

Holding It Together
Oh bless her. I'm so pleased she got through it easily, but it is a nasty experience. I had a peg come out so had to go to hospital. Its far away so it closed up. then they sent me home, then rebooked for another surgery... and.... omg, they didn't have a tube for me! I woke up with a male catheter in my peg hole and had to go home until they were sent one. And this was one of Europe's biggest hospitals. Amazing.
Sheesh. I know the experience of not having the right equipment, but we live in a smaller town in Alaska! I'm glad your hospital was industrius though!
 
FW...you handled the situation beautifully!

Gus' Mic-Key button has only "popped-out" once in all the time he's had either the g-tube or the g-j tube. He stepped on the tubing when he was running his feed and "yanked" the stoma out. I think he was stunned because he didn't freak out at all.

Here's the best part...I was out of town for the weekend (my semi annual scrapbook retreat) and my husband was out for the evening at a fundraising event for our school. Our babysitter was able to remain calm as she called me for instructions. I was able to walk her through it over the phone, probably because our GI team did a good job of preparing me for the possibility prior to Gus receiving the tube.

Step 1: remain calm.
Step 2: find the syringe, locate the connector on the side of the button and drawback the sterile water from the bulb that holds the stoma in place.
Step 3: wash stoma with soap and water.
Step 4: reinsert stoma into hole.
Step 5: replace sterile water in the bulb to hold the stoma in place (again)
Step 6: run the feed for a few minutes to make sure there aren't any leaks.
Step 7: B-R-E-A-T-H-E and relax!

Everything went so smoothly, that we didn't even think to inform Gus' GI doctor about the incident until we met with him about a month later. By then it was just an amusing anecdote. :)

These days, I keep a "fix-Gus-kit" packed. We take it with us when we go on vacation, or anywhere that he might accidentally pull his stoma out.

Carol, with your remote location...extra/back-up equipment and training would definitely give you more peace-of-mind. If you can handle a catheter, then the stoma will be a piece of cake!! :)

Cheryl
 
FarmWife,
I am so sorry that happened to little Grace. We have been very worried Clark's g tube would be pulled out too. Luckily it hasn't happeded yet. It sounds like you handled it very well. Good Job Mamma. We were scheduled for the button replacement last week but due to a back round of bronchitis it will have to be resceduled when Clark has been better for at least 4 weeks. Bummer!! I hope Grace is ok, she is such a trooper. :ghug:
 
Hoping it never happens to Clark, but if it does, hopefully you won't panic now you have advice from some of us. Am thinking little Clark will love his low profile button.
 
Poor Clark. I hope he gets better soon. Grace is going through a bad flare up of asthma. It makes me even more glad about the g-tube. If she had the n-g tube it would have been coughed up by now.

HUGS
 

CarolinAlaska

Holding It Together
FW...you handled the situation beautifully!

Gus' Mic-Key button has only "popped-out" once in all the time he's had either the g-tube or the g-j tube. He stepped on the tubing when he was running his feed and "yanked" the stoma out. I think he was stunned because he didn't freak out at all.

Here's the best part...I was out of town for the weekend (my semi annual scrapbook retreat) and my husband was out for the evening at a fundraising event for our school. Our babysitter was able to remain calm as she called me for instructions. I was able to walk her through it over the phone, probably because our GI team did a good job of preparing me for the possibility prior to Gus receiving the tube.

Step 1: remain calm.
Step 2: find the syringe, locate the connector on the side of the button and drawback the sterile water from the bulb that holds the stoma in place.
Step 3: wash stoma with soap and water.
Step 4: reinsert stoma into hole.
Step 5: replace sterile water in the bulb to hold the stoma in place (again)
Step 6: run the feed for a few minutes to make sure there aren't any leaks.
Step 7: B-R-E-A-T-H-E and relax!

Everything went so smoothly, that we didn't even think to inform Gus' GI doctor about the incident until we met with him about a month later. By then it was just an amusing anecdote. :)

These days, I keep a "fix-Gus-kit" packed. We take it with us when we go on vacation, or anywhere that he might accidentally pull his stoma out.

Carol, with your remote location...extra/back-up equipment and training would definitely give you more peace-of-mind. If you can handle a catheter, then the stoma will be a piece of cake!! :)

Cheryl
Cheryl, that is one cool baby-sitter! I hope you made something sweet for her with your scrapbooking stuff in appreciation! I can't imagine someone else stepping up to the plate like that - was she a nurse? Kudos to you both!
 
Carol,

The sitter that evening was my niece. I'm extremely grateful that she doesn't rattle easily. She's not a nurse, but is attending school to become a pre-school teacher. My other three kids must have been in shock that night and just stayed clear of the kitchen. I'm sure that helped too!

:) Cheryl
 
Ya, when Grace's was pulled out by the dog we stood in shock and didn't breath.
Then we screamed like GIRLS (that includes the men)! lol

Good job for your niece.!!!
 
Ya, when Grace's was pulled out by the dog we stood in shock and didn't breath.
Then we screamed like GIRLS (that includes the men)! lol

Good job for your niece.!!!
Farmwife,
That is awesome! I hope you took photos! One day, it will make a great memory/story!!


So, if you can picture the scene... There I am in the middle of a room full of ladies (14 of us) with all of our scrapbook material spread out from one end of the house to the other and my phone rings. I answer, expecting it to be a question like "is it okay if the kids stay up an extra half hour or so tonight?" Once I realize what is going on, my voice gets really serious and low...you know the "I must appear calm, because everyone is counting on me" voice...and then I exit the room in an overly calm manner.

When my niece and I were finished talking, I returned to my table and attempted to carry-on as if everything was normal. I must have looked like I had just given blood to a battalion of very anemic service personnel immediately following a cataclysmic event. My sister and sister-in-law were both attending the scrapbooking retreat too. My sister was the first to notice my appearance. She asked if everything was okay at home (it was her daughter who was watching the kids). As I began to explain the situation and how we resolved it, one by one, each of the other ladies stopped what they were doing and listened intently to the story.

I have to admit, just re-telling the story helped me regain my color and composure. At the end, they asked if I needed to leave...in true scrapbooker fashion...I said. "no way! Kim did a great job, Gus isn't leaking and my husband will be home in a couple of hours (any more complications will be on his watch), and besides I have photos to preserve for future generations!!!"

The only thing I regret about not being there for the event, was that I didn't have a chance to take photos and document it! My kids could be bleeding out and I'd still say, "wait a second and let me get a picture of that first!" You should see my collection of "owwwwie" photos!

The take away for other g-tube families, is to know that "guts" will not be oozing out of your child, the fix is easy and you can do it! :ghug:

Cheryl
 
! My kids could be bleeding out and I'd still say, "wait a second and let me get a picture of that first!" You should see my collection of "owwwwie" photos!

Cheryl
:ylol::lol2::ylol::lol2::ylol:


When Grace was going through the dx process, her joint pain was getting so bad I decided to video it. After I watched the video I said there's no way I can show this because the doc is going to ask why in the world didn't put down the camera and help your kid.:lol2::lol2::yfaint:
 
Yes, and if you didn't take the video, the doc would suggest that you video it next time!

I wish I had the wherewithal to take more video/photos when Gus was rolling around on the floor in pain.

No, I save it for really "usefull" events like: head split wide open on a corner of a table (eight stitches), 24" of hair tangled in rope of rope swing leaving the child standing on her tippy-toes, cartoon style goose egg when the forehead met a metal chair. Even my husband isn't excused from the "owwwwie gallery." A 60# cement block fell on top of his finger last summer and nearly took his finger tip off. Yep, I took pictures before we left for the hospital (he was so faint he had to lie down on the floor) AND during the suture process (20 stitches). Good times! :thumleft:

As for the kids doctors...Both our primary care doc and our GI doc actually APPRECIATE the photos/videos. No matter how crazy it feels at the time, keep the camera handy.

Cheryl
 

CarolinAlaska

Holding It Together
Cheryl, I can only guess you've got a collection of poop shots too! Hee-hee!

I do have a video of my daughter having a seizure. She only had them at night and we were having trouble explaining what she was doing to the docs. I took the video and a TV with a video player (10 years ago - no cell phone then!) to the doctor's office. One look at the video and the pediatric neurologist had the diagnosis. My husband hates the video, but I hang on to it for Jaedyn to see it when she is grown. She was only 4 at the time.
 
My sister had illiostomy surgery Thursday. We are still in the hospital and she still has the NG tube. Before surgery they wanted to suck the air out and they tried numerous times but my sis was NOT having it! It was so important they they do it she was in ICU. for some reason they wouldn't sedate her. Is that normal? Also anyone ever have the NG tube during and after surgery?
 

CarolinAlaska

Holding It Together
Best sister: It is a difficult procedure for some to get that thing placed. I don't know why they wouldn't agree to doing it under sedation when it didn't work out and they are planning to put her under for the surgery anyway...
 
My fifteen year old son is doing NG tube feeding right now, for the second time around, first time put him into remission, but when he stopped the flare quickly came back. Has this happened to anyone else? They told us it was less likely to put him into remission a second time around and I am scared it won't work and he will need to take the prednisone. He and I are very against steriods since he is so young, and quite small for his age and the side effects are awful.
 
andresmom-My son Clark who is now 4 has a mic key button and receives all of his nutrition through a feeding tube at night. He doesn't eat any solid foods. He started with an NG tube and when we realized this would be long term we had the surgery done for the g tube and just recently switched to the button. We have tried twice now to re introduce foods and keep him on the formula as well. Both times he has flared within a week. When we pulled him back off foods he went back into remission. This last time though he is still having some issues and his blood work indicates inflammation. We have an appointment in a few weeks to see his GI to see what the next step will be. We have been trying to avoid the big medications as he is so young and it was working so well for so long. I am really hoping his inflammation rates will go back down on their own, but may do a round of steroids so see if that helps push him back in remission. In the end I believe it's better that starting him on other meds. I will cross my fingers for your child that he is able to achieve remission a second time with his NG tube. Good luck
 

CarolinAlaska

Holding It Together
I am a strong proponent for maintenance meds. This, I believe, with supplementl feedings have kept Jaedyn off steroids for almost 8 months! I hope you are doing both as you retry the EEN, Andresmom, if not, Maybe you should talk to your GI about it. It takes 6-8 weeks to get them therapeutic, so the earlier the better.
 
I am interested in trying Modulun IBD for my daughter who is having a severe colitis flare. How can I find this product in the US? Has anyone used this product with good results?
 
Its a product created for Crohns disease as I understand. It is considered one of the good liquid diets for those with intestinal issues. Have you googled Modulin in the U.S? it might throw up answers although there is the possibility that it is in Europe only.

good luck with your search.
 
My GI had me get a G tube. It hasn't halted my flare. How long until you or your child got relief from diarrhea?
Thanks. This has been a real rough time. I should mention I only just got the tube last Fri.
 
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Tesscorm

Moderator
Staff member
searchingforhealth - have a look through some of the threads in the Parent's section. Quite a few kids have used enteral nutrition and, I'm sure some have used Modulen, although perhaps not in the US?? I know lots of kids use Peptamin in the U.S.

Is your daughter using an NG tube? If yes, my son used Tolerex and did quite well with it. But, it is unpalatable... which is why I am asking re the NG tube.

Both Modulen and Tolerex are made by Nestle.
 

Tesscorm

Moderator
Staff member
iriechic - not sure if you're ask about the diarrhea because of the formula??? But, my son had d before being diagnosed, he was put on exclusive EN for six weeks. Our dietitien warned us that some people have diarrhea for the entire six weeks (ie liquid in, liquid out). This was the case with my son - he had no pain nor urgency but BMs were not solid until he added back regular food.
 

CarolinAlaska

Holding It Together
My GI had me get a G tube. It hasn't halted my flare. How long until you or your child got relief from diarrhea?
Thanks. This has been a real rough time. I should mention I only just got the tube last Fri.
2-3 weeks, but Jae's first formula (Ensure) didn't agree with her.
 
Tesscorm- Fortunately my daughter and son have good GI health (knock on wood). I could write a book on why mine plunged but I'll spare you, at least for now. The G tube is mine. 34 year old mom. My GI didn't want me on steroids long term (bad side effects). I had 2 doses of Remicade but all it did was cause neuropathic arthritis...better now that I discontinued it. My GI thought a g tube would now be beneficial to absorb nutrients. I am just trying to understand what to realistically expect.
The idea is to stop my inflammation and diarrhea colitis flare.
Thanks for warm welcome and support. Topemax is what I take EN.
 
Yes, unfortunately i'm one of those that still has diarrhoea with liquid food. I have
had a lot of intestine removed though. It might take some time to settle down the flare. look for results within a month if its really bad flare, but it could be sooner.

good luck though.
 
Hi every one, iv been diagnosed with small bowel crohns for a year now just recently came out of hospital after an 11 day stay, im back next week for a check up, im currently on mercaptopurine 75mg daily was 100mg but had side effects, iv not eaten for nealy 4 weeks because of my pain loss of appetite so hospital have me on fresubin considering an ng tube, im thinking this would be in my best interest but not sure if my consultant will think so? im hoping to have meds changed too. and i was wondering as im new to this forum do you think my consultant should listen and consider this too? :(
 
Hi,
NG is one thing but it depends on how well you can sip and stomach the fresubin. I suspect the consultant will know a lot about which options. If you're new to this i'm sure he will consider the best options.
good luck
 
Thank u, I'm ment to have build up shake morning,with fresubin, lunch fresubin and forticreme evening fresubin I'm just about managing a build up shake once Aday that's my lot :-/
 
oh dear, i'd have a word with the specialist and do you have a dietician to monitor you? you need one to work with you. Mines brilliant.
 

UnXmas

Banned
Well I came close to having a feeding tube, but didn't. I had surgery and developed post-surgical ileus, which meant I couldn't eat at all (and was in too much pain and too sick to anyway). My digestive system had to be bypassed altogether with TPN feeding. Though apparently it helps ileus to chew gum - it gets the gut working without actually putting any food into it - so I was chewing gum and having TPN and IV fluids for several days.

However, I did have a nasal-gastric tube to drain bile from my stomach, and I have to say that my fears over having the tube inserted (when I first contemplated the idea of NG feeding, I thought I'd faint just thinking about the tube going down) were unfounded. It was uncomfortable having it put down, but it was so quick. Or maybe I just had very skilled nurses. :) It was mildly uncomfortable the first night, but after that I could forget it was there. I was actually worried about them removing it because having it there to drain the bile from my stomach was such a relief. But they did take it out, and I didn't need it any more. It literally took a few seconds to come out. I'm not sure if the bile tube is the same as an NG tube for feeding, but it does go the same route, nose to stomach, so it must be similar. I'd really encourage anyone having one not to worry too much about the discomfort - for me at least it really wasn't that bad at all. :)
 
I have lost so much weight over the year my gastro doc decided on Wednesday to admit me for NG feeding, I am awaiting a bed now. Pretty nervous about the whole thing. Really struggle to eat with the nausea. I was supposed to go in yesterday, but my NHS hospital does not have any beds, so I have played the waiting game today, still awiting for the bed manager to come back to me.
I have only ever had an NG for a barium meal I had.
Pretty scared right now.
 
Hello Earthsoul, just wanted to send you some support. I will be thinking of you and hope all goes super well. May the feeding help with weight gain and help you get a foothold with CD.

Take care and please let us know how you are doing.:hug:
 

CarolinAlaska

Holding It Together
Hi Earthsoul. I hope that you are holding up okay. Can home health help you get the NG tube as an outpatient without having to go to hospital?
 
No sadly not Carolin, My GI Doc wants me in to get it all in place, I guess he needs to get the dietitian, the whole feeding regime and the NG in place and see if it makes an impact. If not he will have to resort to TPN. I am hoping then he might let me go home, at least on leave. Sadly there is still no bed so I am stuck at home waiting. I don't mind on one level, it is nice to be surrounded by my home comforts, but on the other it is delaying getting treated and I work, so worried how long this will all take and the impact on my job!
 

CarolinAlaska

Holding It Together
I hope a bed opens up soon. Not having enough beds seems to be a recurring problem in the UK. Looks like they should consider building more facilities.
 
The funding is not there, the NHS is on its knees and cannot fund any more beds or hospitals, if anything they are cutting beds were they can sadly :(
 
Need help....had white pus around G tube site yesterday. Specialist said soap and wash it, then apply antibiotic cream. This AM woke with some green crustiness at area. It is slightly tender but not red outside of hole area. I have had it 5 weeks. Please help concerned mom thanks!
Anyone ever have similar?
 
Call. Always call.
My Grace has issues as well. She's a one yeast infection and two cellulitis infections.
Gauze seems to irritate her stoma. We've gone to cleaning every other day with rubbing alcohol. Most docs and or nurses say no need for that kind of cleaning but with Grace it seems to be necessary.
 
Thanks for your response Farm wife! Kept Doc informed today. She said clean every 8 hours and send her picture. I needed my husband's help with photo, so it was just sent.

What is cellulitis? How is it treated?

Today is my daughter, Vanessa's 6th birthday. I am wishing this PEG tube was the last thing on my mind. :(

:ghug: thanks for your support, means a lot!
 
Cellulitis is a skin infection. IBD'ers can be prone to it.
Google to look at pictures.
If theirs a chance it could be, make sure you call the doc and tell them so.
That kind of infection can get BAD real quick.

Oh the big six. My boy is that age. Such a fun time. I hope you enjoy it!
 

UnXmas

Banned
Just to let you guys know I am now in hospital x.
I hope you'll be home again soon - and be heavier and healthier than you are now!

After I'd been losing weight in hospital for a while, I was incredibly weak and tired. When I got on TPN, I was still sick from my surgery and other complications, but just getting some nutrition into me again did have a quick, noticeable difference, even though I only had it a very short while. The NG tube could well make you feel a whole lot better.

I also had a tube through my nose to my stomach - it wasn't for feeding but for draining bile, but I found having the tube put in was nowhere near as horrible as I expected. It can be done very quickly, you gag a bit but there's no pain and then it's done. Once it was in I very quickly got to the point where I wouldn't have known it was there, and having it taken out again was even quicker than having it put in.

So I know going into hospital is horrible and having an NG tube sounds horrible, but please don't worry. You'll get through it and hopefully be in a much better state of health when you get home again. :hug:
 
It is not too bad!
The 6 bedded ward I am in has a number of young people here!
The NG is in and feed is going through.
Hoping that I will have my proper bags in today as yesterday they were not sure if I would get to the right ward and I did not want to carry too much stuff around with me. Now I am on the right ward.
 
Here's an odd question...have any of your kids complained of pain at the G-tube site? Gus has been having pain lately. He says it feels like "pointy sharp things are trying to push a boulder through" his stoma.

I've removed it, looked at it, cleaned it. Nothing looks infected or odd. It's just difficult to see him in so much pain. Fortunately it does not last long. The pain seems to come on in an instant and goes away just as fast.

Like I said, strange. Any thoughts?
 
Our surgeon said if Grace says it's trying to come out, that she might need a longer g-tube.
Do you notice if the tube seems indented in the flesh? If not, could his stomach be ascending higher up because he's growing?
 
Need help....had white pus around G tube site yesterday. Specialist said soap and wash it, then apply antibiotic cream. This AM woke with some green crustiness at area. It is slightly tender but not red outside of hole area. I have had it 5 weeks. Please help concerned mom thanks!
Anyone ever have similar?
Our docs told us to ONLY use soap and water to clean. The tubing will breakdown if it comes into contact with alcohol and/or petroleum products (like those used in ointments (Neosporin, Polysporin, etc...).

It sounds like the soap and water is working, since the redness is down. Keep the area dry and clean.

Good luck.
 
Our surgeon said if Grace says it's trying to come out, that she might need a longer g-tube.
Do you notice if the tube seems indented in the flesh? If not, could his stomach be ascending higher up because he's growing?
GENIUS! Will pose the question to his doctors ASAP!!! Thank you, Thank you, Thank you!!!!!!!

Cheryl VT
 
Our docs told us to ONLY use soap and water to clean. The tubing will breakdown if it comes into contact with alcohol and/or petroleum products (like those used in ointments (Neosporin, Polysporin, etc...).

It sounds like the soap and water is working, since the redness is down. Keep the area dry and clean.

Good luck.
Interesting, I told the Surgeon's nurse what we were doing and she says as long as it works. I shall check with the doc again and everyone on this forum should always check with their doc first.:)
 
GENIUS! Will pose the question to his doctors ASAP!!! Thank you, Thank you, Thank you!!!!!!!

Cheryl VT
Do you mind if I save/print this post and put it on the fridge.:)
Sometimes I think my hubby forgets what kind of genius he is dealing with.:rof:
 
My 8 y/o son has had Crohns for almost 3 years and since I am refusing Remicade our doctor is encouraging enteral feedings. However, I know dairy is a trigger for him. Are there any formulas without dairy? The dr. says it is easier to digest but I don't want to make him feel worse as we have seen such improvement since doing no dairy. Anyone else experience this?
 
We were finally able to relieve Gus' gut pain by venting his G-Tube. Hooray! So simple and easy. Kind of a "duh" moment. When your child is in extreme pain you never think of it as gas that is locked in the stomach!

I am so thankful that he has the G-Tube to make venting a possibility. If he didn't have the G-Tube, the gastritis would still cause the same gas build-up and we wouldn't have any means to relieve the problem.

Now I just need to figure out how to get extra tubes...one for the car, one for school...for venting "on the go."
 
I was told a few months ago that I had gastritis and esophageitis but the only thing they prescribed was Prevacid. Should there have been more?
 
I was told a few months ago that I had gastritis and esophageitis but the only thing they prescribed was Prevacid. Should there have been more?
If the antacid is working, then great.

The "venting" process is literally just inserting the feeding tube into the mic-key button and allowing the built-up gas, and perhaps some stomach fluids, to escape. Then we just disconnect and rinse the tubing. Gus feels relief immediately, where the antacids didn't really do anything to abate the pain.

Hope that helps.
 
Hello everyone,
I am new at the forum. Diagnosed with crohns jan '13 and was doing very good on remicade infusion every 7 weeks. Sadly since beginning of December haven't been able to eat anything due to pain after eating. At the moment I'm taking 1 or 2 cans of Nutridrink (same as Ensure) a day with heavy pain meds. Lost about 20 kilograms since December and are at this moment critically malnourished.

I'm getting a NG tube placed next Thursday, but mine will be put further down so it ends in the duodenum. Don't know what it's called in English... :ybatty:
I need to stay in hospital for at least a week because they are very afraid that i develop refeeding syndrome.
At the moment i heard i was getting hospitalized i started crying my eyes out, so I didn't understand any of the information that came after this point... :ack:
The little bit I understood from the doctor is that this type of tube needs to be placed in a different way?

Can someone give me some more info about tubes being placed in the duodenum?
Does anyone have experience with refeeding syndrome? Is there anything I can do to prevent this myself?
I am on a gluten and lactose free diet normally, as I know I will get terrible bloating when I use this products. Is there a type of formula which is both lactose and gluten free?
 
Normally a duodenal feed is put in under sedation I believe but I might be wrong!
I had to go through the refeeding risk, let the team handle it, there is nothing you can do to prevent it, but they will check your bloods daily to see if you lose potassium, magnesium or phosphate then slow the feeds down if you do and supplement the minerals getting lower. I am on a gluten and lactose free diet and the dietician accommodated this.
I hope that helps
x
 
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Thanx Earthsoul!
You didn't actually get the refeeding? Hope I don't get it either, so I can go home as fast as possible... I absolutely hate that I need to stay there! I'm homesick after a day, because I don't want to leave my animals, and they tell me I have to stay at least a week! I've tried to convince them of letting me go home, and I would go and get my blood tested twice a day, but they refused.
As far as I can find on the internet, placing the duodenumfeed is sort of the same as a gastroscopic exam. I had that one time and was happy to be asleep. I know the hospital I am going to Thursday is not a big fan of giving sleep medication during these kinds of "minor" treatments as they call them...
For me however, I don't want to be awake because I'm not scared at this point, but know that if I get scared during the procedure, it will become a big problem to get me to do it again in the future. So I called the hospital today, and the doctor will call me back on Monday. I hope to convince him of making me sleep for the procedure. Will try to write down all the other questions during this weekend,, so I can get them answered Monday.
 

CarolinAlaska

Holding It Together
I think they'll put you under sedation for this. They usually do. They have to use the scope, whereas an NG tube does not. I think in English they call the duodenum tube an NJ tube (naso-jejunum - which is the first part of the duodenum). I hope it goes well for you and is a positive experience...
 
CarolinAlaska: thank you!
That it's being called NJ tube in English makes sense, stupid I didn't think of that myself... The hospital I'm getting treatment in right now tries to do all of their gastroscopic exams without any sedation. I'm not the biggest hero in the world, but as long as I know I will be under sedation I don't care. I hope the doctor wil listen to me Monday and agrees to put me under sedation, otherwise we might have a problem... :facepalm:

Hopefully it all goes well, and I start putting on some weight very fast. I can't wait for the day this pain is over! Normally I love to try out new recipes, new ways to cook my food and eating it. I miss being able to eat solid's very much, counting down the days till I'm able to throw all rhe nutri-cans out of my fridge and start filling it with food again! :chef:
I don't know if it's even possible to eat anything solid while the NJ tube is in place?
 

UnXmas

Banned
I don't know if it's even possible to eat anything solid while the NJ tube is in place?
I've not had an NG tube for feeding, so this may be different to how it is for you, but when I had an NG tube to drain bile from my stomach, I could eat and drink with it in place. It must be pretty similar as the tube to drain bile also goes from nose to stomach. It was a little odd swallowing food with it in place, but not painful - not even uncomfortable once I got used to it.
 
Must say that eating is easier with a tube through the abdomen. I did eat with a naso gastric tube though. Can feel uncomfortable until you become used to it.

As for sedation, it might be an idea that you tell the people you have panic attacks, that way they won't want any trouble during procedures and give you some. I always say that.

I'm not sure but I think NJ tubes have the end of the tube down in the jejunum. I stand to be corrected on that. We call ours a naso gastric tube and it goes in the stomach.

good luck, Lente
 
Thanx for all the support!
The doctor in training (what are they called??) phoned me this morning. I've asked what sort of tube it will be, and I will get a NJ tube, so the end of the tube indeed lies in the jejenum.
I've asked why they won't give me a normal NG tube, but they are worried that I will also get stomach pains as my stomach is of course also not been filled properly the last months, and then it might be a little bit difficult to know if the pain is caused by my colon or by my stomach. As soon as feeding with the NJ tube goes without any pain in my intestines, the tube will be pulled back so it becomes a normal NG tube and then my stomach will get used to being filled as well.

Then I asked if I could get sedation for the procedure... He became a bit agitated! He thinks there is no need for sedation. I explained why I'd rather have it anyway, and he answered (very rudely) that he wasn't planning on giving sedation just because the patient is having irrational fears!!! :ybatty:
I'm normally not the type to be swearing or becom mad, but something in me cracked when he said that. I became very mad, and said to him that I am the patient, and I have the final say in what is being done to my body! I also said to him that he either made sure I will get the sedation, or I wouldn't do the procedure at all in this hospital, but would make sure I'd file a complaint and get the story in the newspaper! At that point he apologized and said he would arrange for me to get sedation, but he still wanted to make sure I understood that even with these mild kinds of sedation there always are certain risks. I told him that in crossing the street there is also the risk of being run over by a bus, and yet millions of people take that risk several times a day!
Am I the only one getting very frustrated and tired of needing to defend myself to every nurse, secretary or doctor in training?
Thanks for the tip about saying I have panic attacks! Maybe it's settled whit this morning's phone call, but if needed I will certainly use it before they start the procedure!
 

UnXmas

Banned
Not to disagree with you as you know you want sedation, but having an NG tube had been a massive fear of mine before I had one - I'd seen videos of other people having them put in that made me feel faint. I was adamant that if I ever needed one I'd have to be sedated for them to put it in. When it actually came to it, I was in horrific pain because my digestive system was paralysed - nothing could come up nor go down and the bile was collecting in my stomach so that I looked 9 months pregnant and felt like my stomach was going to explode - it was the worst pain I'd had in my life. So when they told me they were putting the tube down to drain the bile, I was so desperate for them to do it I didn't raise any objections when they said there was no sedation. And it was actually incredibly quick, easy and painless; I'd worried over it for nothing! (And it drained the bile and the relief that it had ended the worst of the pain was incredible - I didn't want to have the tube taken out after that!).

You have the right to tell them you need sedation - but if you can try it without, you may find you can avoid the risks that sedation brings.

I also had a similar experience with an upper endoscopy - I told them I'd need sedation but after they'd talked me into it I gave it a go without and it wasn't so bad.

You may surprise yourself with what you can tolerate, and be surprised that some of these procedures are not as dreadful as they sound.
 
UnXmas: thanks for your reply!
I totally agree with you, and I also understand the doctor's reasoning for trying to get me to do it without sedation! Unfortunately my throat has been a very sensitive subject since I was 16 years of age...

It was my senior year of high school, and I developed a throat infection. At first it was nothing to worry about, but for some reason it just didn't seem to be getting better. My doktor wasn't the type to start antibiotics very fast, which I think is a good thing. But when I was surviving on water ice and having fevers of 39/40 degrees for two weeks, I started coughing up blood. He sent me to the hospital, and they did an exam of my throat with a scope... I can tell you that hurts like hell when you entire throat is one big, infected wound!:eek:

The doktor started me on antibiotics, and after a few days it looked like I was getting better. Untill 2 days later my fever came back and went to 41,5 degrees. I was rushed to the emergency room, where I started to lose my consciousness. The bacteria which are normal to live in your throat had entered my bloodstream, and caused Meningitis.
I ended up being on ICU for 2 days, and after that another 2 weeks hospitalized with very heavy antibiotics via IV.

Maybe now you understand why I am terrified of anything being shoved down my throat?

That said, I wasn't even mad about the fact the doktor said he didn't like giving sedation, it was the way he said it. As a nurse myself, I just can't understand why they don't ask what you're afraid of, or what caused the fear! He simply started saying my fear was irrational (and maybe it is...) so sedation wasn't necessary! Never once asked me why....

For me, in the past year of being a patient I found that a lot of doktors, nurses and other staff quickly jump to their own conclusions, without actually hearing what the patient is trying to say. I believe that listening to the fears and discomforts of your patients may take an extra minute or 2, but you will win that time back 10 times because patients are more likely to trust you. Therefore will be less scared when they need to have an exam/operation/procedure, simply because they trust you to take them seriously when they say they're getting scared or in pain during a procedure.
But that's just my view on it, having been the patient as well as the nurse....
 
Hey guys! i think its fantastic that these support groups are out there now! i was diagnosed in 1999 at the age of four and after bad reactions to almost all medications they decided to go with a ng tube. I had it for five months and had it changed (never with sedation) every four weeks. At the five month mark they decided it needed to be permanent so i had a Peg surgically placed for months then it was changed to a button. I had a stomach tube 13 years, until i was 17 year old. I finally got it removed my summer going in to grade 12 because I couldn't deal with having it anymore. I was so desperate to have it removed and the waiting list to have it surgically removed was months long, i opted to be awake without any type of medication and have a GI doctor remove it during my operation consultation. I had two flare ups in high school, one in grade 11 when i had the tube and one in grade 12 just after it had been removed. The feeding tube did absolutely nothing to help me during the flare up. I needed to be put on liquid nutrition anyway so the feeding tube did not even help me gain weight. I was told after your growth is finished tube feedings do not act as a primary treatment and other medications would have to be used. I have tried all 5ASA's, sulfa medications, Imuran and 6mp. I have reacted to all medications and am now on Remicade. Despite what docters tell you when your children are younger please be aware that even with a Peg or button inserted, tube feeding is not a permanent form of treatment and Crohn's is something you have for life. It was not easy growing up with a feeding tube and it DOES cause restrictions. I constantly had a stain on my shirt from stomach acid and always a raw area around the tube. The formula caused me to feel nauseous so we were constantly changing it. I also got salmonella poisoning and the aramonus virus due to having a feeding tube which is a gateway for bacteria and viruses when your in Cuba or places like Cuba. Most people can just close their mouth in the shower or water when they are in places like this but if you have a stomach tube it is impossible to due so. There are SO many factors you would never even think of to consider before making the choice to get a permanent abdominal tube. Having had a G Tube for 13 years I have had almost every situation possible happen to be due to the tube but it was also an amazing thing when i was young and caused me to be symptom free for years. Theres definitely pros to this treatment but there are also cons! feel free to email me at [email protected] if you would like to ask me any specific questions about my life with a tube!
 
My 8 y/o son has had Crohns for almost 3 years and since I am refusing Remicade our doctor is encouraging enteral feedings. However, I know dairy is a trigger for him. Are there any formulas without dairy? The dr. says it is easier to digest but I don't want to make him feel worse as we have seen such improvement since doing no dairy. Anyone else experience this?
I was on tube feeds for 13 years and am severely lactose intolerant. Believe it or not there are a large variety of baby formulas that are dairy free but be careful which ones your dietician recommends because some of them contain dairy substitutes that can be just as irritating to the gut. It took me a LONG time to find a formula that wasn't a irritant even though it is easier to digest. Make sure the formula isn't one of the "drinkable" flavoured ones, those were the ones that caused me the most problems!
Good luck!
 
To get a tube up the nose and down the throat painlessly, put your fingers under the nostril that will have the tube in. Push hard on the skin and pull it downwards over your teeth. This shifts the sensitive tissues at the back of your nose and then there is little problem.

good luck
 

UnXmas

Banned
UnXmas: thanks for your reply!
I totally agree with you, and I also understand the doctor's reasoning for trying to get me to do it without sedation! Unfortunately my throat has been a very sensitive subject since I was 16 years of age...

It was my senior year of high school, and I developed a throat infection. At first it was nothing to worry about, but for some reason it just didn't seem to be getting better. My doktor wasn't the type to start antibiotics very fast, which I think is a good thing. But when I was surviving on water ice and having fevers of 39/40 degrees for two weeks, I started coughing up blood. He sent me to the hospital, and they did an exam of my throat with a scope... I can tell you that hurts like hell when you entire throat is one big, infected wound!:eek:

The doktor started me on antibiotics, and after a few days it looked like I was getting better. Untill 2 days later my fever came back and went to 41,5 degrees. I was rushed to the emergency room, where I started to lose my consciousness. The bacteria which are normal to live in your throat had entered my bloodstream, and caused Meningitis.
I ended up being on ICU for 2 days, and after that another 2 weeks hospitalized with very heavy antibiotics via IV.

Maybe now you understand why I am terrified of anything being shoved down my throat?

That said, I wasn't even mad about the fact the doktor said he didn't like giving sedation, it was the way he said it. As a nurse myself, I just can't understand why they don't ask what you're afraid of, or what caused the fear! He simply started saying my fear was irrational (and maybe it is...) so sedation wasn't necessary! Never once asked me why....

For me, in the past year of being a patient I found that a lot of doktors, nurses and other staff quickly jump to their own conclusions, without actually hearing what the patient is trying to say. I believe that listening to the fears and discomforts of your patients may take an extra minute or 2, but you will win that time back 10 times because patients are more likely to trust you. Therefore will be less scared when they need to have an exam/operation/procedure, simply because they trust you to take them seriously when they say they're getting scared or in pain during a procedure.
But that's just my view on it, having been the patient as well as the nurse....
Thank you for explaining - I'm sorry this happened to you, and I'm sorry if my post sounded a bit patronising. I myself had no good reason for my prior fear of NG tubes - I was just scared (until I was actually made to have one ) .

But I do understand what you mean - I also have a phobia of anything being inserted into my bladder, and in this case, my fear came from past bad experiences, as yours does. Three times I've had a medical procedure involving something into the bladder, and there's no sedation and they tell you it won't hurt much, and all three times I passed out. Now I never want to have any bladder procedure without sedation ever again; even the thought of it makes me feel faint. So far I haven't had to, but I came close to needing a catheter after my last surgery, and I was dreading it so much, but luckily my bladder started working on its own.

Maybe it would help if you explained your past experiences to the doctor? He's probably assuming that no patients need sedation for an NG tube because it's not a painful procedure; if you explain it's not the physical pain you're worried about but that you have a fear based on past experiences, he could understand the problem? The same way many patients are scared of MRIs scans - it's not a straightforward concern about pain but (in the case of MRIs) a phobia of closed spaces, or how some can't stand needles and have panic attacks when having blood taken. Many people have these kinds of phobias that go beyond a simple fear of pain, so your doctor should be familiar with the concept.
 
I too had no idea of the throat problems. I also agree with Unxmas, perhaps the doctor needs those fears explained. I too have a few issues with needles and have to psych myself up for the MRI scan. How do big people feel about those!? I'm tiny but still have to close my eyes for duration and try and breath normally.

@MM I also have tried many liquid feeds and am over 10 years with a PEG. I can fully understand you wanting to get rid of it. My PEG tube has narrowed and has ulcerations and bleeds during the changing of each button. It's agonies. I would love to be done with it. I don't think it helps my crohns and i agree that the dairy type foods are way too much for my intestine.

I should probably just have salmon and potatoes and suffer in silence.
 
Thanx for all the support!
UnXmass: you didn't sound patronizing at all. I would've said the same thing if I didn't know any background.

Thursday I had my D-day... The doctor who was going to do the procedure had absolutely no problem with sedation! I never needed to explain myself, he just asked if I wanted it or not, so I said yes, and that was it.:)
Sadly the procedure itself failed. They first got the probe from my mouth into the jejenum, then pulled back the probe, and the only thing left was to put the tube upwards from my throat to my nose... But the tube got stuck somewhere inside my nose, and I know i'd been screaming and kicking in pain, afterwards they told me they had to restrain me with 4 people. So they checked my nose with the probe and discovered the space was to small for this kind of tube.

The next day the nurses tried to put in a regular Ng tube, but this one also didn't fit through my nose. So the nose dokter was called. He examined my nose and discovered the bone in my nose is very crooked, and because of it there is hardly any room to put a tube in without hitting a nerve. He decided that they had to put in a children's tube, as they are a lot smaller. Also he put filling in my nose for 15 minutes, which would both sedate and also widen the nose tissue so it should be easier to insert the tube. After 15 minutes the nurses tried again, but no success... The nose doctor returned and he finally had succes! Everybody happy!
After 5 minutes my nose started hurting very bad... 15 minutes pain got very, very bad... 30 minutes I was screaming to get it out but all they did was give me a tablet to calm me down which didn't work... 1 hour the doctor came back and told me they wanted to try it for another half hour. I was in so much pain I took the tube and ripped it out myself. At first he looked very bad, but then he saw that the nurses didn't take a children's tube, they used the biggest tube they had!!!:ymad: That's why I had so much pain, the stuff to widen my tissue had worked out, and the tube had been laying against some nerves.

By that time I was totally exhausted, the doctor said she was going to see what they could do next. In the mean time my mum came to visit, and I cried for half an hour when I saw her...
My paracetamol and tramal was being brought, and then they brought dinner. I was very hungry so decided to try and eat some and take a oxynorm afterwards. It tasted very delicious, since I didn't eat a real meal for over 3 months...
Doctor decided I could go home for the weekend, and need to be back Sunday evening. Monday morning we will have a meeting and decide what to do next...

The weirdest part of it all is that I haven't had any stomach pains to complain about after eating the dinner! The only thing different from normal was the lorazepam they gave me to calm down... That stuff also works as a muscle and nerve relaxation, so maybe it's worth to try if I can eat something using these kinds of medicine? Maybe Amytriptilline? I'm certainly gonna ask on Monday... Still don't know if I will let them try a tube again, even if it's a children's tube, for now I'm also terrified of things being put down my nose...

Respect for those who take the time to read it all. I'm very shook up about the whole thing, and don't think many people without the experience of a tube will understand! Hope I will get my nerves back under control by Monday morning, as the tube really is necessary....
 
Lente, what a bad time you're having. I hope all goes well for you this morning. Good luck and keep us informed. This Crohn's disease is a really horrible thing to suffer.
 
I was wondering how often to you get infections around your g-tubes or pegs?

Grace has yet another one, her third in three months. It spreads quickly and can be serious. Her GI has declared her g-tube dependent. But I don't know if it's worth it to keep it.:hug:
 
Oh, Farmwife, I so feel for you. I sometimes hate my G tube. Mine stings so badly through the tube area that I can hardly move sometimes. It pains me to know that little Gracie is feeling pain there. I often think of going right back to a naso-gastric tube. But I have both sickness and D, and the tube gets all in a tizzy when I puke, so I get in a panic. My naso tube never gave me the pains that the peg tube does. It gets so weepy, sore, itchy and stings, then goes hot red. I do sympathise with Gracie. I tend to use sea salt bought from the supermarket and dissolve it in warm water then bathe the area in that. Also, cavilon can help, it just forms a barrier over the weepy/bleeding surface.

I sincerely wish I could do better for you with advice for little Gracie. How are things if she drinks liquid food?
 
I was wondering who uses which 'forumula' for NG tube feedings. I had no idea there are so many types. D is on Peptamen Jr. 1.5 We were using Peptamen Jr. 1 in the beginning.

What do you use? Do you know why you use that one?
 
Grace uses EO28 SPLASH made by noecate.
It's a full elemental formula. The GI likes this kind because it's the most palatable and that's not saying much. It comes in a juice box with straw. There's no mixing and easy to put into the pump bags.
 
We used Modulen when she was doing this by mouth in the beginning. If I had to use that & mix with water every time I would go mad. The splash sounds like the same type of container as the peptamen jr minus the straw. Looks like a beefed up juice box.

How long did it take to start 'kicking in?' Did grace start gaining weight quickly? Did it decrease her bathroom trips?
 
No, Grace still needed pred. She was really sick and stopped eating.
After four months of pred she stayed full EEN and then it helped. She was more energetic and some weight gain but it didn't last long even when trying ldn with full EEN. Grace has mobility issues with her track, so constipation is her problem and nothing has seemed to help for long periods.:( she finally a wee bit better with mtx and humira.
 
Gosh, Farmwife,
Little Gracie is so going through it! What a shame she is so young. I was hoping to hear good things about LDN as it's one thing I have not tried. For the constipation I am wondering if cod liver oil might help, or hemp oil put on her food or in it. Unfortunately I have never been a constipation person. It's always the big D.
Good luck with the mtx and humira. I so hope her health can be improved. She doesn't deserve such illness at her age.
Thinking of you,
Diane
 
I was wondering how often to you get infections around your g-tubes or pegs?

Grace has yet another one, her third in three months. It spreads quickly and can be serious. Her GI has declared her g-tube dependent. But I don't know if it's worth it to keep it.:hug:
Awww! I am so sorry to hear that Grace is having trouble with her G-tube.

Gus' G-tube "leaks" around the sides on occasion. He just wipes the goo away. We've told the GI about it, but the fit and inflation of the G-tube have always been okay. He's never had infections in or around his tube. I don't know if it's normal/good/bad, but we've just become accustomed to the ooze and the crust and clean it up as it comes.

I presume the fit and all have been checked on Graces tube. Do they have any idea about the source or type of infection she is getting? I'm wondering if it would make a difference if it is something naturally occurring on her body of if it is an external source. Could she be touching the MicKey button after playing (like all kids do) and not washing her hands? Could she wear a plastic cover/barrier (like you do with a PICC line) over the MicKey button during the day?

I'll keep you and Grace in my prayers.
Cheryl VT
 
Awww! I am so sorry to hear that Grace is having trouble with her G-tube.

Gus' G-tube "leaks" around the sides on occasion. He just wipes the goo away. We've told the GI about it, but the fit and inflation of the G-tube have always been okay. He's never had infections in or around his tube. I don't know if it's normal/good/bad, but we've just become accustomed to the ooze and the crust and clean it up as it comes.

I presume the fit and all have been checked on Graces tube. Do they have any idea about the source or type of infection she is getting? I'm wondering if it would make a difference if it is something naturally occurring on her body of if it is an external source. Could she be touching the MicKey button after playing (like all kids do) and not washing her hands? Could she wear a plastic cover/barrier (like you do with a PICC line) over the MicKey button during the day?

I'll keep you and Grace in my prayers.
Cheryl VT
:facepalm: Dial soap. I had her use a different soap this time. Grace has special soap because of her eczema and I ran out and used Dial Soap.
It cleared up with a bit of steroid cream.:ybatty:

Does anyone here have a Gastrostomy-Jejunostomy Tube?
Grace is still in the flare and her stomach is still not draining quickly.
The G-J tube was brought up but am hesitant on placing ANOTHER tube in my kid.:confused2:
 
I have the low profile Corflo cubby device. Mine bleeds and has pus and leakage everyday. Sometimes it's so sore I can hardly move. It gets so bad that I stuff some KY jelly down the side of the tube, but it only helps for an hour or so. It's a difficult situation and sometimes, like today when I'm wanting to do a few things, its so sore I just want to give it up. My gastro doc says it can't be relocated. It does have crohns in it though. I too get to be at my wits end.

Hope Gracie improves soon.
 
hey guys
so sad to hear some trouble going on with the g tubes. Its a very difficult situation to deal with. i had a ng tube for a year when i was 5 years old then had a peg placed for a year. the peg was extremely irritating for me and as a 6 year old i liked to be active and the tube limited me severely. But my parents were set on the treatment so I had a g tube place or a "button". I had to get it changed numerous times but I had a tube from 6 years old until i was 17. all those years I struggled with infection and inflammation around the area. At first it was brutal but then just became part of my life. I always had a stomach acid stain on my shirt and it was constantly raw, red and bloody around the area. I tried everything to clear it up. things that don't work are covering it with gauze, it made the leakage worse therefore the rash was worse. also tighter fitting shirts are extremely irritating. i found carrying a container of Bag Balm cream and constantly putting it around the tube was the only thing that helped. You can purchase it at equestrian stores and natural food stores.
good luck!
 
:Does anyone here have a Gastrostomy-Jejunostomy Tube?

Grace is still in the flare and her stomach is still not draining quickly.
The G-J tube was brought up but am hesitant on placing ANOTHER tube in my kid.:confused2:
Yes, Gus had a G-J tube for a while (because of the stricture at is duodenum). He actually has a duodenal bypass between his stomach and his ileum, so when he needed the G-J tube, they just inserted it directly through the bypass and into the small bowel.

The G-J just replaces the G-tube, but it has two lines. One goes into the stomach and one goes into the intestines (usually through the duodenum). So, it shouldn't be an addition, per-se.

Neither the G-tube nor the G-J gave Gus any trouble. They work(ed) equally well.

I wish you and Grace the best of luck!
Cheryl VT
 
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