Finishing 8 weeks ENN through NG Tube

[Leed2713]

My son was diagnosed with Crohns 8 weeks ago tomorrow. He has been receiving module through an NG tube for the 8 weeks. The consultant who is dealing with his treatment is off for two weeks and no one has contacted me about going ahead anf removing tube and starting on low fat low fibre diet. He started on azathioprine 4 weeks ago. It was delayed by two weeks as we were on holiday and the doctor was afraid of side effects. He has been having weekly blood tests to monitor his levels and his liver function is still slightly high but decreasing. I have been in contact with the hospital and the secretary was horrified when I suggested even going to the hospital to have his tube removed as they are a very busy department. I don't want the child to be disappointed that his tube wont be coming out this week when he has been looking forward to reintroducing food and has been so strong throughout this process. but I also don't want to get community nurse to take the tube out and follow my findings on google of a low fat low fibre diet. I feel so alone and feel there is no follow up after my initial diagnosis when I was told my son was very ill when he went into hospital.

 

[Leed2713]

I am afraid of causing another flare if the tube is taken out this week even though the 8 weeks is up as I cant get speaking to his consultant

 

[Charlotte.]

Hi Leed, I'm sorry for you being alone with the ongoing treatment right now. Is there no chance to call your son's GI to receive further advice how to go on now?
I've been on EEN (without tube) for 6 weeks once and I was not given a proper plan as well so I started to reintroduce one food by another (SCD-legal foods apart from legumes, nuts and dairy because I know that I can't tolerate them).
I was told the best way would be to slowly reintroduce "normal" food, so to keep EN in the daily meal plan and reduce it day by day while reintroducing more and more foods.
You can also write down symptoms your son experiences when he eats certain foods (in a diary) but symptoms can occur up to 3 days after the meal was eaten (so not so easy to find out what food caused problems).
I started with easy digestible food that healthy people would eat when they have the stomach flu.
That's only the way I did it.

 

[Leed2713]

Hi Leed, I'm sorry for you being alone with the ongoing treatment right now. Is there no chance to call your son's GI to receive further advice how to go on now?
I've been on EEN (without tube) for 6 weeks once and I was not given a proper plan as well so I started to reintroduce one food by another (SCD-legal foods apart from legumes, nuts and dairy because I know that I can't tolerate them).
I was told the best way would be to slowly reintroduce "normal" food, so to keep EN in the daily meal plan and reduce it day by day while reintroducing more and more foods.
You can also write down symptoms your son experiences when he eats certain foods (in a diary) but symptoms can occur up to 3 days after the meal was eaten (so not so easy to find out what food caused problems).
I started with easy digestible food that healthy people would eat when they have the stomach flu.
That's only the way I did it.

Hi Charlotte thank you for getting back to me I contacted the hospital again and am waiting on the dietician to get in contact with me. The GI who looks after my sons case is off for two weeks but I spoke to another GI. She said the dietician will contact me and to go ahead and she will let me know if it is ok to have tube removed and diet plan for my son to follow. So I am hoping she will contact me today. I am already worrying about a reoccurrence of a flare when I should be being positive. I just feel that I am being left to my own devices and that I am the one chasing up appointments I never received an appointment or anything even though the 8 weeks are up. Also my GP doesn't forward results each week from my sons blood test to the hospital I have to do this and although I have no problem with doing that I just feel the after care is lacking and there is no following through on things. Maybe I'm just making a mountain out of a mole hill. Sorry for moaning on

 

[crohnsinct]

You are totally justified in your moaning! We are not docs and need their guidance and being left alone like that is concerning.

I have had two daughter s do EEN and it is a very slow reintroduction of food. EEN works great to attack the inflammation but typically at some point after you reintroduce food the inflammation returns. That is why it is very good that you started a maintenance drug. However, those drugs take a while to build to therapeutic levels so a slow reintro of food will probably tide you until the drug can take over.

For my daughters our first step was giving then 30% of their calories from food and continuing with 80% from formula. We did this or about 2-4 weeks and rechecked inflammation. If it was still good we stepped down to 50/50 and so on.

Good luck! EEN and food reintro is really more of an art than science.

 

[Leed2713]

Hi Crohnsinct

thank you for your reply. I think it is just hitting me know that after EEN it might not be the end of this for my son. I was being so positive thinking this will keep him in remission for years as he is only 12 and was so failed. He has begun to look a little better but hasn't put on much weight. I then feel selfish as its not happening to me it is happening to me. I just feel so helpless and would rather have his pain so he didn't have to suffer. I am praying the dietician does get back to me today so that I have a set plan in place. my son isn't one for eating a lot and has a restricted diet generally before all this happened. But I know how much he wants this tube out. that seems like a great plan though starting at 30 80 ration and then moving on to 50/50. I see you have two kids with this awful condition god bless you. Has EEN with medication maintained remission for your daughters xo

 

[crohnsinct]

My first daughter yes! At the six month mark she still wasn't in remission and steroid dependent and we tried EEN and it worked! So with Remicade and Methotrexate she has stayed in remission for three years! She has grown 8 1/2 inches and gained 47 pounds. She was dx'd at 12 and she is now almost 16. You would never know she has Crohn's. It did take a long while thoug for her to start gaining weight and growing. The insides have to be nicely healed and then slowly it starts. She only gained a few pounds on EEN but it was about 6 months after when the real gaining and growth started.

My second daughter was dx'd January 2nd of this year and we are still trying to hit on exactly what will work for her. We are hopeful Methotrexate will soon be working but if not, we are prepared to move on to biologics. EEN got her to remission but methotrexate couldn't hold her there. Once we got to 50/50 EEN/food the inflammation returned. We are doing a course of steroids now to see if that might work better.

Hold on...better days ahead!

 

[Leed2713]

My first daughter yes! At the six month mark she still wasn't in remission and steroid dependent and we tried EEN and it worked! So with Remicade and Methotrexate she has stayed in remission for three years! She has grown 8 1/2 inches and gained 47 pounds. She was dx'd at 12 and she is now almost 16. You would never know she has Crohn's. It did take a long while thoug for her to start gaining weight and growing. The insides have to be nicely healed and then slowly it starts. She only gained a few pounds on EEN but it was about 6 months after when the real gaining and growth started.

My second daughter was dx'd January 2nd of this year and we are still trying to hit on exactly what will work for her. We are hopeful Methotrexate will soon be working but if not, we are prepared to move on to biologics. EEN got her to remission but methotrexate couldn't hold her there. Once we got to 50/50 EEN/food the inflammation returned. We are doing a course of steroids now to see if that might work better.

Hold on...better days ahead!

I was recommended to go with the EEN first and not to go for the steroids due to the side effect of stopping puberty. The EEN has worked well I can see an improvement. I do realise though that Azaithroprine can take up to 6 months to work. That's great news for your daughter 3 years in remission woo that give me great hope. I suppose once he is back to eating again it will tell the tale. I hope the steroids work for your second daughter and remission is maintained for as long as possible for both of them. His bloods are all coming back fine except for the liver but the consultant is happy to continue with the medication. I think I'm just on a learning curve at the moment. Need to start doing a little more research. I was putting my head in the sand for awhile not wanting to read up on the possibilities of what could happen down the line. You are right happier days ahead I must remain positive. Thank u it feels so comforting to have people to talk to who have been down this path before me

 

[my little penguin]

Second the keeping the tube in until he gets enough calories
My kiddo did 9 weeks of een but no tube and slowly added foods back into his diet
He was on 6-mp at the time and his liver numbers started to rise
It took a year of tinkering with meds to get to remicade which helped Ds a lot
He is now on humira /mtx with partial een plus crohns exclusive diet
It seems to be doing the trick
Once they can something even a little it makes the formula part easier.
Good luck

 

[pdx]

First of all, congratulations to your son (and you!) on finishing 8 weeks of EEN--that's not easy, and it's great that he was able to do it. My daughter used an NG tube last spring, although she was allowed to have 10% of her calories from food while on the tube. After 8 weeks of that, she was allowed to add 50% of calories from food. Like you, we weren't given much guidance on what foods to use, so I decided to pick foods based on this IBD diet:

http://www.umassmed.edu/nutrition/ibd/ibd-aid-reference/

Here's a chart showing more details about the foods they recommend at different phases:

http://www.nutritionj.com/content/13/1/5/table/T2

It helps if you can add back foods slowly, so that you can tell if a certain food is causing problems. Your son will probably also do better if he's willing to still use the NG tube for some of his calories for a while. When my daughter went off it completely, she started having more symptoms again (diarrhea, cramping, nausea), so we went back to 1200 calories a night of EN, and eating during the day, and that helped.

During this period of 1200 calories of EN a night, my daughter learned to put in the NG tube each evening, and take it out in the morning. It seems like a hard thing, but there are youtube videos of kids demonstrating how to do it, and it wasn't hard for my daughter to learn to do it. You might want to watch this video with him:

https://www.youtube.com/watch?v=YJIFOCbPTjo

If he doesn't want to continue with the tube at all, he could also try drinking the formula for part of his calories..

Now that my daughter's treatment is working well for her, she is no longer doing nighttime NG tube feedings, and she can eat almost anything. I still try to give her mostly homemade, unprocessed foods, so that we can control the ingredients though.

Oh--and one last thing. Once you're ready to take out the tube, you just take off the tape and pull the tube right out. It helps if you give your son something to drink while you do it, because he'll get that yucky stomach acid taste for a second as it comes out. But otherwise, there's nothing to it. (But don't take it out until you're sure that you don't want to continue with partial EN.)

I hope that his maintenance meds work well for him, and that he's feeling better very soon!

 

[Leed2713]

Hi little penguin and pdx

Thank u so much for your replies and links. I got a call from the hospital I have to go down on Thursday to hear what will happen next. It's the dietician I am meeting so will know better then what is next. I feel better to know I have an appointment. At least I am now aware that EEN may continue as well ascots reintroduction slowly. Before this I thought it was just tube out and back to food. Well after the initial low fat low fibre diet. I am going to read all the info in the links now pdx thank u so much.

 

[my little penguin]

http://www.crohnsforum.com/showthread.php?t=71686

Thread on partial en plus crohns exclusive diet