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Clark getting a G tube

We ended Clark's 12 weeks of EEN on March 29th and slowly introduced foods back into his diet. Our plan was to have him continue to drink 3 peptamen jr's a day and see how things go with a blood draw at the end of April. He won't drink the peptamens and is going down hill fast. Arthitis pain, tummy pain, fevers have started back up again and he lost 1lb 1/2 in a week. The GI has scheduled his G tube surgery for April 16th. We most likely will pull him back off of foods again and do strictly EEN to see if we can get things under control again. If that doesn't work I will approach LDN with his doctor. i am currently on it and compound it down to liquid form without needing a prescription so that won't be a hurdle I will need to jump but of course I want the Dr's on board with his treatment plan. I am very sad, angry, frustrated and depressed that his remission didn't last longer but we knew once the food was reintroduced this may happen.:ybatty: I am crossing my fingers that we get lucky again and he will quickly improve with the G tube and EEN.

my little penguin

Staff member
SInce Clark is so little- I hope you will have the GI give you the recommended dose/prescription for LDN based on his weight, age and size. SInce even OTC meds that are safe for adults or older children are not necessarily safe for little ones at the same strength.
I hope the G tube works and the EEN brings relief soon.
So sorry to hear this. Grace ended her pred, 3 days ago(still on EEN). Now she is bleeding. I know what you mean, why couldn't it have lasted longer. HUGS!


Holding It Together
Jaedyn couldn't/wouldn't drink the Peptamens either, but she can/does drink Peptamen/Ensure half and half mixtures. I know Ensure isn't the best of the formulas, but so far she is staying healthy - no diarrhea, no pain, and hopefully gaining. She's drinking 8 total cans/day and eats a little food too - trying to slowly introduce foods again...
Hi EThan Clark

Lucy goes in for her Micky button on
15th April .
Like MLP said I think Lucy will get the G-tube
First then the Micky button after her stomach
Will know more tomorrow at GI appointment.
Hope G-tube goes well
Do not use Abbot Lab nutrition products for supplementing or EN!! They contain CARRAGEENAN which is a known GI inflammation producer!! They are CONTRAINDICATED to use in IBD Patients!!

My son was on Pediasure EN for 3 years via NG and then G tube nightly....3-8 cans per night. He just had to have a 2 foot jejunal resection! Pediasure and Ensure drinks also have this ingredient! Find an alternative today!

CarolinAlaska-He will have the longer PEG tube placed and then after 8 weeks we will go in to get the mic-key button.
MLS-I do hope and pray for little Lucy that :ghug:this will be what she needs to help her get better. Good Luck with the surgery.
Ben (age 10) had a g tube placed over 2 years ago, he has never had any issues. So much better than having to keep an NG tube down! The only maintainence is changing out occassionally, usually every 3-4 months and if it gets to loose and is turning around too easily, check the amount of water in the balloon that keeps it in. Very easy to do. Lots of times if there is increased irritation at the site it's because you need to refill the balloon (with tap water and small syringe).

We use some antibiotic drops (they are normally prescribed for ear infections) when the site is looking red or irritated. I can get you the name if you want.

Feel free to message me!
Bens RN- Thank you so much for the advice. i would love the name of what you used if you can provide it. Thank you again :ghug:


Holding It Together
Our surgeon was going straight to the MICkey when Jaedyn was scheduled. I think some surgeons are starting to do that.

Regarding Carageenan, right now it seems to be working okay. We are doing half Ensure, half Peptamen Junior. It is the only way my daughter will drink it. She didn't tolerate drinking total Ensure. I wish that Ensure didn't include the Carageenan. Does anyone know why they do?
My son has had the PEG tube for 4 months now. It is so much easier than the NG tube. He had quite a lot of pain for 6 days after the installation and he vomited in the evenings (I think his stomach was not just tolereating the normal amounts in the first days), the skin was quite irritated for about 3 weeks. After that everything has gone very well.

My son gets Neocate junior 800-1200 ml per day, depending on how much he is eating. Normally not much and after he started to eat after 8 weeks of EEN, he started to develop some rash again :frown: . The doctors recommended us to avoid milk protein, otherwise he can eat everything, except that we decided to avoid gluten as well.
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CarolinAlaska can you just use Peptamin Jr? I would not use Ensure or any other products that have carrageenan. Abbot Labs surely knows it is not safe and doesn't care, or hopes that it will lead to our Crohnies needing to use their more lucrative biologic meds. Ben is already on Humira :(
David gave me some great articles on Carrageenan that I gave to my son's GI. He seemed genuinely interested when I told him my concerns. We have an appointment on April 30th and I am hoping we talk about it then. When I first asked him about it being contraindicated he was unaware of any issues.

I will let you know what I find out.

Hoping Clark feels better soon :(


Holding It Together
CarolinAlaska can you just use Peptamin Jr? I would not use Ensure or any other products that have carrageenan. Abbot Labs surely knows it is not safe and doesn't care, or hopes that it will lead to our Crohnies needing to use their more lucrative biologic meds. Ben is already on Humira :(
No, if we don't go with the Ensure in it, she can't drink it. It would mean a MICkey for her. I think I'm going to wait and see for now. :(
Elecare Jr has no carrageenan as well and it isn't added to the powders - only needed for thickening & consistency in the ready to drinks. Also not found in the clear juice type supplements.
I'm just going to add my support to Catherine's suggestion that you try the Ensure powder rather than Ready Mix. It's very simple to mix up, the taste seems alright and it's Carrageenan free.
It's been quite a while since our last update so I thought I'd post to let you all know how Clark is doing. We went in yesterday to get his G tube switched out for a MIC KEY button. He was pretty scared but it went really well and was a very short process. His first night with the new button went great. He is about 39 pounds now and is 37 1/2 inches tall. He almost looks chubby :) We love it. He still receives 1250 calories per night of pepteman jr . We did try to reintroduce foods again about a month ago but he started to flare again after a week. All symptoms returned. We pulled him back off foods and he will just remain on formula for the time being. We did just have his labs done yesterday so we will see if the flare raised any of his levels. Our plan right now is to keep managing his Crohn's with the EEN as long as that keeps him in remission. We will discuss more with his new doctor after the blood work comes back. His regular doc went back to Canada after his fellowship was over so now he is seeing the main PED GI at Primary Children's Hospital. I do hope all of your kiddies are doing well.