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Crohn's Disease Forum » Parents of Kids with IBD » Using Stelara For Children With Crohn's


 
01-16-2017, 10:59 PM   #181
vtfamily
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I completely forgot to mention...it has been a very long time since Gus needed any supplemental feedings through his G-tube. So, for his 16th birthday, his doc approved removing it. I deflated and removed it at home. He was so elated! Nothing but pure joy for the rest of the day.

He had the port for so long that it took quite a while to heal, in fact he had to have it sutured closed after about six months.

We had fun with it though. The stoma would "act up" when he was hungry. So we joked that his other mouth wanted to be fed too. Crohn's families have to find the humor where they can! Right?!

Take care all.
Cheryl VT
01-16-2017, 11:02 PM   #182
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How many years did he have it? Just curious because my daughter has a G tube that she does not use anymore (she had to get a J tube placed because of her Gastroparesis, which she uses instead).

We have talked about letting it close, but her GI said it would probably have to be sutured since she's had it for more than a year and we haven't gotten around to it.

Did Gus's close easily after being sutured? Did it leak? Any issues?

M's stoma also makes noises when she is hungry .

Glad he is done with it!
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Juvenile Idiopathic Arthritis at 12
Juvenile Ankylosing Spondylitis at 16

Mom of S (23)
dx with JIA at 14
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01-16-2017, 11:10 PM   #183
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It was Carol's daughter who is having the pill cam and scopes this week. We went to meet about Caitlyn doing a research study. It did not go great. I posted about it on my thread, the one titled it's been 7.5 years since diagnosis. If you want to take a look at it.
Sorry Kim for the mix up. I will go to your thread to follow-up on the study. Sorry to hear it didn't go well.

Cheryl VT
01-16-2017, 11:23 PM   #184
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How many years did he have it? Just curious because my daughter has a G tube that she does not use anymore (she had to get a J tube placed because of her Gastroparesis, which she uses instead).

We have talked about letting it close, but her GI said it would probably have to be sutured since she's had it for more than a year and we haven't gotten around to it.

Did Gus's close easily after being sutured? Did it leak? Any issues?

M's stoma also makes noises when she is hungry .

Glad he is done with it!
He had been through several versions of G-tubes and G-J tubes along the way. The tube has been in for about 7 years. He hasn't had to use it at all since he started Stelara 4 years ago.

Pulling it out was easy. I cleaned the area really well and put gauze and a bandage over it. Cleaned and bandaged every day the first week. I did everything they would have done at the GI's office...and I saved myself the hour drive there and the hour drive home.

There was some leakage the first 24 hours, but not as much as you would expect. Gus did get a little rash because his skin was sensitive to the adhesive from the bandages. No fever or anything, it just looked icky, so I took him into the local clinic to be on the safe side.

The suture part was a little more complicated than I thought it would be. They had to go in pretty deep to completely suture from the inside out. Gus was sore the next day, so it was good we did it late in the week. He missed one extra day of school and recovered over the weekend. Otherwise the suturing was not a big deal.

I was rolling on the floor with laughter at the face the nurse practitioner made when I told her I removed it myself, at home. All of the color drained from her face and she just stood there in disbelief. I assured her that I did it with the doctor's permission. Still, she hurried out of the room to touch base the doctor. In the end, it was highly entertaining and nothing to be worried about.

Now that it is all healed, the scar almost looks like a second belly button.

I hope that helps.
Cheryl VT
01-16-2017, 11:25 PM   #185
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CarolinAlaska,
How did the pill cam go today?
Cheryl VT
01-17-2017, 06:09 PM   #186
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What a great update,
Grace is going on almost 4 years with her gtube.
It's been a blessing to have it but it will be a blessing to remove it for good. Lol
The surgeon told us that after 2 years, it will have to be stitched.

Lol, about the nurse. Don't they know we ibd mom's have had to handle a lot worse.
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I'm mom to............... Little Farm Girl 8 yr old
Ibd (microscopic)
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dx Juvenile Arthritis
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dx Erthema Nodosum
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Bladder and Bowel Dysfunction
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Ehlers-Danlos Syndrome dx (1/26/17)
Remicade started on (9/8/14)Every 4 wks
Azathroprine started on 10/9/15
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Past Meds- LDN, Humira, Pred, MTX, Sulfasalazine
01-21-2017, 10:22 AM   #187
CarolinAlaska
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How did the pill cam go today?
Cheryl VT
That was on Thursday. It was disappointing, because we don't think it got through her ileum before we ran out of time.
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Osteoporosis/osteopenia, Scoliosis, EDS, Asthma, Epilepsy, Hla B-27 positive, gluten intolerant, thrombophlebitis, c.diff, depression, anxiety, postural tachycardia/POTS and multiple food allergies.
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