Share Facebook


 
08-07-2014, 07:25 AM   #211
SupportiveMom
Forum Monitor
 
SupportiveMom's Avatar
 
Join Date: Mar 2013
Location: Toronto, Ontario

My Support Groups:
My SIL is a nurse. She also treats as a walk in the park. Procedure is pretty easy compared to others. (One nurse told me she would swap a NG tube any day for a PICC flush as the PICC is too close to the heart in her opinion for nurses to be dealing with. Kids are resilient. I'm sure there will be a few bumps but will go pretty smoothly . The insertion of the tube was the easy part for us compared to her keeping it in & down.
__________________
Mom of 16 yr. girl w/Indeter.Colitis Sep. 2012(age 11) Nov.2012 Crohn's Sep. 2014 Crohn's Colitis, UC Nov 2015, Crohn's Feb. 2016

Ileostomy surgery July 2015

Current Meds: None!
Previous Meds: Humira, Remicade, Methotrexate, Cipro, Flagyl, Zofran, Cortifoam, 5-ASA suppository, Questran, Mezavant, EEN (Peptamen Jr. 1.5) by NG tube, Antibiotic Cocktail (Vancomycin, Metronidazole & Doxycycline), Simponi, Prevacid, Imuran, prednisone
ibdsupportivmom.wordpress.com ☆
08-07-2014, 02:19 PM   #212
Spooky1
Forum Monitor
 
Join Date: Sep 2011
Location: South Northants, United Kingdom

My Support Groups:
I must say I feel for all you young ones having to go the NG tube route. I went into hospital for mine to be inserted initially. I was an adult though. It brought tears to my eyes the first time. I learned how to do it myself without issues though. I learned to press my fingers on the skin below the tube nostril. pull down so fingers are more over the teeth area. Put tube up and whilst pulling down on the skin under nostril the sensitive bit of tissue up the nose which reduces us to involuntary tears is also shifted down so there is no collision between end of tube with its guide wire in and that very painful area. Once you get it past there, the only thing left to do is grin and bear swallowing it. Easy after the first time.
Good luck with your tubes and young ones. I sincerely hope it helps their digestive tracts heal.
08-07-2014, 02:48 PM   #213
UnXmas
Banned
 
Join Date: Oct 2012

My Support Groups:
I found the insertion easy. Though I'm an adult, and I'd imagine it would be hard for kids, because it's scary having something like that done. But if you can keep calm, it's not too bad, physically (though I would think it could be if you have any kind of throat problems). For me it got easier with practice too. My tubes did fall out a couple of times, and I had one removed in order to have an endoscopy, plus I'd had one to drain bile (rather than to feed) on a previous hospital admission. By the last tube, it was done in a matter of seconds. Keeping calm and breathing is the most important part. I'd have a drink in my hands, with a straw, and the nurse would tell me when to swallow. The final tube I had inserted, between the nurse and myself, we managed to get the timing dead on, and I did it in one swallow.

The difficulty is that it's natural for children to panic when undergoing a procedure like this (and probably natural enough for many adults too). I think that's when it becomes difficult.

So although my digestive system couldn't tolerate the NG tube, and it was a failure for me, I hope I can provide some reassurance that the insertion isn't necessary terrible. I also found that I couldn't even feel the tube once it was in - once they've taken the wire out, it was like it wasn't even there; I could talk and eat and drink with no discomfort. I'm not sure if my experiences are typical, but it was certainly a lot more comfortable to have inserted, have it in, and take it out, than I imagined it would be.
08-07-2014, 05:17 PM   #214
Spooky1
Forum Monitor
 
Join Date: Sep 2011
Location: South Northants, United Kingdom

My Support Groups:
I think I would feel terrible if I had to watch and try and support a child going through this for the first time. Some though are fine, whilst others seem to feel a bit 'invaded'. They can see the tube and feel it inside and might find this uncomfortable and frightening.
I personally have throat issues (blood blisters and ulcers) so at times the tube was a little uncomfortable. Aside from that, I agree with UnXmas, it's hardly noticeable after a short time. Only thing uncomfortable are the peculiar looks you get from the average human. Some of the comments are quite funny too. Especially from children.
08-07-2014, 09:10 PM   #215
Pilgrim
Senior Member
 
Pilgrim's Avatar
 
Join Date: Jul 2014
Location: Ontario

My Support Groups:
I'd be curious to hear some of the comments you hear and maybe even some replies - the ones you speak and the ones you think...could be worth a chuckle?

I'm not sure how it will go with Hannah. She's really, really good-natured and accepting most of the time. For a short while when she was really anemic (before diagnosis) and sick of being poked for blood all the time she started kicking the lab techs full force. I was shocked to see it, but I understood. Now I take off her shoes before blood draws, but she's been ok these last few months.
If she gets the tube inserted next week it will be the same day she has a small bowel follow through, and blood work, and who knows what else. Hopefully she'll still have patience.
I cancelled her spot in an early kindergarten program this year, and so we will have a year or more depending on how things go to adjust to Crohn's before there is a classroom of kids asking her about the tube.
I'm really glad that it is not bothersome after insertion. That is a comfort and will make the process easier for me anyway. If I'm calm it'll help me keep her calm.
__________________
Mom to daughter,age 5, diagnosed at age 3 with Crohn's Disease
Current Treatment: Humira (started 12/2014) moved to weekly injections (07/2015), Back to 50% EN orally. Zinc supplements. Calprotectin through the roof.
Previous Treatment: Azathioprine (discontiued 09/14 due to Pancreatitis) Flagyl, Sulfasalazine, EEN, Iron,Vit D, Zinc, SCD
10-01-2014, 02:31 PM   #216
Pilgrim
Senior Member
 
Pilgrim's Avatar
 
Join Date: Jul 2014
Location: Ontario

My Support Groups:
We're back again. She never did need an NG tube and did the full 6 weeks orally. It worked well, after that we went down to 50% EN and started AZA and then stopped AZA after a bad reaction - so here we are again. She's going to have a go at 100% EN (EEN) again in hopes of a good remission.

We are looking at maybe adding Methotrexate or Humira but I do hope we can avoid it by cycling EEN and 50-75% EN for 6 week periods.

Would be interested in hearing stories if anyone has experience.

ETA: I posted this in the wrong spot anyway as for now we aren't using a tube. OOPS! But maybe there are still stories...
10-02-2014, 06:16 AM   #217
Spooky1
Forum Monitor
 
Join Date: Sep 2011
Location: South Northants, United Kingdom

My Support Groups:
Sorry to hear of the issues with AZA, I don't do that one either, unfortunately. Good she can drink her liquid feeds. I hope one or other of the meds can help too. But maybe she just needs a lot more liquid feed time to get her in to remission and well again.

Good luck
01-15-2017, 07:42 PM   #218
dchad57
 
dchad57's Avatar
 
Join Date: Jan 2017
Location: Jameson, Missouri

My Support Groups:
Recently put on Enteral Nutrition NG tube feedings.
01-16-2017, 06:22 AM   #219
Spooky1
Forum Monitor
 
Join Date: Sep 2011
Location: South Northants, United Kingdom

My Support Groups:
Let us know how it's going, will you? People are always interested and looking to support you.
01-16-2017, 12:13 PM   #220
ronroush7
Forum Monitor
 
ronroush7's Avatar
 
Join Date: Oct 2013
Location: vienna, Virginia

My Support Groups:
Agree
Reply

Thread Tools


All times are GMT -5. The time now is 10:53 PM.
Copyright 2006-2017 Crohnsforum.com