Crohn's Disease Forum » Parents of Kids with IBD » Tell Me Your G-Tube Stories, Daughter Getting One Tomorrow

09-11-2017, 04:06 PM   #1
ladyphoenix1010's Avatar
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Location: Eden Prairie, Minnesota

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Tell Me Your G-Tube Stories, Daughter Getting One Tomorrow

My 11 year old daughter was diagnosed with Crohn's in Nov 2016. She has been doing Enteral Nutrition using a Naso-Gastric tube since that time. This therapy has put her into remission and our GI pediatrician says, "You don't stop a therapy that gets you to remission." So it looks like we are in for the long haul and have decided to get a Gastrostomy Tube.

My daughter is really sick of the NG tube in her nose, as good as she is at putting it in and out on her own. She was quick to make the decision to move to a G tube, even after being thoroughly educated that it will require care and cleaning and some amount of pain.

What has been your experience with moving to a G tube? Tell me the good, bad and the ugly.

09-11-2017, 05:24 PM   #2
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Maya142's Avatar
My kiddo got a GJ tube (she also has Gastroparesis, which is why she needed a GJ tube vs. just a G tube). The surgery is the same, they just put in a tube that is threaded through the stomach into the jejunum.

It was 3 days in the hospital for us. My daughter woke up in a lot of pain and was given IV pain meds immediately. They helped a lot. She was given IV morphine for the first day or two (every 4-6 hours) and then switched to oral pain meds. Some kids don't even need that - they are given oral pain meds much sooner or even just Tylenol.

It really varies depending on the kiddo. Some kids just need Tylenol, and others, like my daughter, need pain meds for a few days.

She found things using her abdominal muscles (sitting up from lying down, coughing, laughing) very painful for a few days. But she was up and walking within an hour of waking up from the surgery (which was as soon as it was allowed).

Hmmm...besides that, I can't think of much else. She hated having a NJ tube (since it has to stay in all the time vs. the NG tube, which she inserted by herself and didn't mind at all) so she was very glad to get the GJ tube. Unfortunately, for us the GJ tube didn't work - the J portion would flip back into her stomach, which resulted in 20 or so tube changes.

Eventually, we went to a separate J tube. That surgery was much harder on her. It was an open abdominal surgery (about a 2 inch incision through her belly button) vs the GJ tube, which is essentially putting a hole in the stomach.

Now she has a separate G tube and a separate J tube. The G tube we use for venting, the J is for formula. The G tube site is VERY easy to maintain and she recently learned how to change the G tube herself (it was VERY easy - she said like changing a giant earring). It doesn't hurt when it's changed.

About a month after the surgery she had site infection. We were told they're not that common, so we were just unlucky. It took two courses of antibiotics to clear it up.

The site does leak a little (most do), so she uses fabric G tube pads we get on Etsy.

Feeding Tube Awareness is a great organization with LOTS of tips and tricks about G tube (and GJ/J tubes). They have a whole section about the surgery:

Some surgeons will go straight to a Mickey button, others will put in a longer, dangling tube first. Our surgeon put in a long tube first and once the site had healed, switched to a button. My daughter did not like the long tube - it hurt when it got pulled (so tape it down) and it showed through her clothes.

She only had it a couple of weeks though and then we switched to a button. She LOVES the button (we use Mickey buttons but some people prefer the AMT Mini) and it is very small and inconspicuous. No one would know it was there unless she told them.

As for cleaning, she will use a q-tip and clean the site once or twice a day - she just wipes it clean. When she's in the shower, she uses soap to wash it. Nothing special or difficult to do.

Once the G tube site heals completely (which will take 4-6 weeks), it should not hurt. My daughter can move her tube around and even replace it without any pain.

Good luck!! If your daughter has any specific questions, we are happy to answer them (or at least, we'll try).
Mom of M (20)
diagnosed with Crohn's Disease at 16
Juvenile Idiopathic Arthritis at 12
Juvenile Ankylosing Spondylitis at 16

Mom of S (23)
dx with JIA at 14
Ankylosing Spondylitis at 18
09-11-2017, 05:31 PM   #3
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Maya142's Avatar
I wanted to add - my daughter's GJ tube was placed in Interventional Radiology - not by a surgeon. So what they did was essentially just poke a hole through her stomach.

It can also be done laparoscopically by a surgeon. I think most children's hospitals do it by an interventional radiologist now, but sometimes it's done by a surgeon depending on the kiddo's history.

So she only had the one incision (the tube site) but if it's done laparoscopically, there will be more than one. She had general anesthesia and was completely asleep for the whole procedure (I'm sure your daughter knows this, but just wanted to reassure her!).

We took an ipad to the hospital which ended up being very helpful. It was a great distraction from the pain. Her belly was so sore that I was really glad we didn't take her laptop because I don't think she could have put it on her lap.

The other thing I wanted to add - my daughter had a drain when she came out of the surgery. We didn't expect that - she thought it was gross. It was only there a day (if that) and was connected to the tube.

Here is the link from Feeding Tube Awareness:
09-11-2017, 08:30 PM   #4
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Join Date: Dec 2014
Location: Portland, Oregon

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I just wanted to say that I'm impressed that your daughter has been using a tube for this long (and putting it in herself!). And it's so great to hear that EN put her into remission!
Daughter E (15) dx with Crohn's 12/18/14 at age 12

Current treatment:

Remicade started 12/24/14 (9 mg/kg every 6 weeks)
Oral methotrexate restarted 12/2/16 (20 mg weekly)
vitamin D, folic acid, iron, multivitamin, Prozac

Past Treatment
90% EN via NG tube 2/9/15 - 4/2/15
50% EN via NG tube 4/3/15 - 4/18/15
Supplemental EN via NG tube 5/7/15-6/19/15
Budesonide 3/3/15-6/30/15, 3/24/18-5/18/18
Oral methotrexate 3/13/15 - 5/14/16 (15 mg weekly)
Clobetasol for Remicade-induced psoriasis
09-12-2017, 07:43 PM   #5
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Farmwife's Avatar
Join Date: Apr 2012
Location: Michigan

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My girl has had her gtube for 5 years.
It's been so long ago I barley remember her surgery.

It's been great for her.
Maya basically said it all (thank you )

Be prepared for messes at first. It happens and it's best to have a sense of humor because you'll go nuts with the cleaning bill on your couch, carpet, bedding.......
I'm mom to............... Little Farm Girl 9 yr old
Ibd (microscopic)
dx Juvenile Arthritis
dx Erthema Nodosum
Bladder and Bowel Dysfunction
Ehlers-Danlos Syndrome dx (1/26/17)
Remicade started on (9/8/14)Every 2 wks
MTX started AGAIN on 11/21/17
EN/EEN- since (1/12/13)
Past Meds- LDN, Humira, Pred, MTX, Sulfasalazine,
09-12-2017, 07:54 PM   #6
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Maya142's Avatar
How is your daughter doing? Hope everything went smoothly!
09-12-2017, 07:58 PM   #7
ladyphoenix1010's Avatar
Join Date: Sep 2017
Location: Eden Prairie, Minnesota

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How is your daughter doing? Hope everything went smoothly!

Everything went great today! My daughter got the button right away and she doesn't have too much pain while on Tylenol. She had pedialyte through the tube successfully. Looks good for her to come home tomorrow.

Thanks so much for all the great info!

09-12-2017, 08:03 PM   #8
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Maya142's Avatar
So glad it all went well!! Hope you can get home tomorrow!! I would expect soreness and pain around the site for a while, but I bet she'll be ready to go back to school pretty soon.
09-14-2017, 07:38 AM   #9
Join Date: Jul 2017
Location: Forsyth, Montana
Glad it went well. It really is so much easier than the NG tube.


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