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Nutrional Therapy, It is so hard!!!

My 17 year old son had been on Pentamen for 2 weeks, he had already lost 25 lbs in the last month, and think he continues to lose weight. He absolutely hates it and is so hungry. Me and my husband feel so guilty eating, we sneak dinners in the basement. I just feel so bad for him and don't know how he continue, especially when he finally can go back to school. He has missed 5 weeks of school already!
Does anybody who had done the whole route know if this gets easier? Or how to make it more palatable. See the doctor tomorrow and I am afraid he will recommend a NG tube, which my son is REALLY against, who can blame him? How can I ask him to keep going when there has been very little improvement and he keeps losing weight and having bloody diarrhea?
2nd dose of Methotrexate was last night.
 
What's pentamen? Is it a food substitute (as in, completely, no real food allowed)?

If it's anything like modulen, which it seems to be from googling, he should be gaining weight on it, since it's something like 2.5kcal per 2L or something :p Something is going wrong somewhere if he's still losing weight.

Tube feeding makes it easier because you don't actually taste it, which is the worst part of some of these things :p
 
It is 1 call per ml I think, and no real food allowed. I am trying to find a way to make it taste better since he is resisting drinking it all the time!
 
Yeah I was on something similar through my teen years

As far as making it taste better, I know some allow you to mix milkshake powder into it, but not sure if this brand does so you'd have to ask the doctor. But when he can drink it all he'll gain weight
 
make him some oatmeal, but with no sugar, add salt and a little cinnamon to make it palatable. oatmeal is tolerable to me, but only when i use instant and not traditional rolled oats. and i dont mean the packets with added sugar.



wow i just looked up the ingredients to this and it contains maltodextrin(second ingredient), that has been reported to worsen crohns disease by feeding ecoli, try to find a replacement formula for him. one time i was using a chicken boullion for making soup and it make some symptoms worse and i foudn it to have maltodextrin in ti, since i typically react to lactose and sucrose which are sugars, i suspected maltodextran to also be bad for me and discontinued it, this was before i read any article on the connection.


Peptamen- scroll down to ingredients
http://nestlehealthscience.us/products/Pages/PEPTAMEN-JUNIOR®.aspx

maltodextrin ecoli link-
http://health.usnews.com/health-new...n-artificial-sweeteners-worsen-crohns-disease
 
If he is on EN to induce remission then don't add foodstuffs as that will most likely defeat the purpose. EN is the first line of treatment in most countries, except the US. In several studies, EN had around the same efficacy as steroids. I believe these studies are posted in the EN Forum.

There are other formulas but the more easily digestible(or broken down) the less palatable they are. If he isn't doing well with drinking it and doesn't want the ng tube then you might discuss switching to prednisone just make your son aware of the side efects he may experience such as moon face, acne, restlessness, moodiness. All of the decisions are difficult, my son did prednisone but loathed the aide effects and has sworn he won't do it again, he is now more open to EN. The methotrexate usually takes about six weeks to determine full efficacy. I wish you luck and hope things improve for your son quickly.
 
Well he has been in the hospital again so he was started on NG feed and the doctor is letting him have some crackers which helps a lot.
 

Tesscorm

Moderator
Staff member
I'm sorry he's been back to the hospital! :( My son did six weeks of EN (he was just a few weeks shy of 17 when he started) through NG tube. He ingested 3000 cals per night (he had his formula only overnight). He would insert the tube before bed and remove it in the morning. Once he learned how to do it (it only took a few days to feel comfortable doing it), it literally takes seconds to insert.

To help during the day, my son was allowed clear fluids - pop (no coke/pepsi/etc., just ginger ale, 7-Up, etc.), popsicles (no chocolate), freezies, jello, gatorade, clear candies (like Lifesavers, no caramel/chocolate candies), apple juice (no fibre) and broth.

The broth was especially helpful as he would have a bowl at meal times - not quite a 'meal' but the flavour was more 'food-like'. :) We weren't given any maximum amounts of these liquids although we were told to be conscious of the amount of sugar (ie jello, popsicles, etc.). To add some variety, I would heat different flavours of broth with different spices/herbs - beef, chicken, vegetable broth with basil, rosemary, oregano, etc. (just be sure to strain out the spices).

I arranged with the school to keep a supply of freezies in the staff freezer and would send the broth to school in a thermos so he could 'eat' with his friends.

Please be careful with the crackers - one of the purposes/benefits of exclusive EN is complete bowel rest. I'm not sure if crackers would defeat some of this purpose and it would be a shame for your son to make such a big sacrifice only to have the benefit diminished because of a few crackers. :(

Our nutritionist did warn my son that weeks 3 and 4 were tough to get through but that it would get a bit easier after that... my son did find this to be true. Distraction was also really important, especially in the evenings!

During the 6 weeks of exclusive EN, my son gained 10 pounds but, after the six weeks, he continued with the EN at 1/2 dose, 5 nights per week with a regular diet and then gained almost another 20 lbs over the next six weeks!

EN helped him quite a bit... it took him into clinical remission right away and kept him there for almost two years. He only now (last week) added remicade as his new adult GI felt that, although he was pretty much symptom free, there was continued inflammation that EN hadn't been completely able to eliminate.

If your son is able to stick it out, it will, hopefully, bring him the same benefits! :ghug:
 
Thanks for the info from your son's experience. I told the doctor M was pigging out on crackers (if that's possible) and he didn't say anything but it really makes him feel better and over two weeks just drinking the formula was just nosy happening! I think the doctor feels like this is a concession to help him transition to the nose feed. Which he just hates and it will be 24 hours for a while until he can tolerate a faster feed
Right now we are just trying to slow the diarrhea enough so he can stay hydrated at home
Progress but very slow!
And the NG tube was a mini disaster for me to insert, I am dreading that again. M doesn't think he could do it himself yet.
 

Tesscorm

Moderator
Staff member
Yes, I'd forgotten you have to gradually increase the speed of the pump but, while we were at the hospital, it only took two days to get him up to 200ml/hour - he would ingest 2000 ml over 10 hours (3000 calories). They gave him the option to try to gradually bump up the speed to MAX 300ml/hr - Stephen usually runs it at 200 (but he's now only getting 1000ml overnight).

This isn't the case for everyone (actually, seems to be less common...) but Stephen had diarrhea throughout the six weeks. Nutritionist said to expect it - liquid in, liquid out but Stephen didn't feel any sense of urgency or other problem with it (no pain, burning, etc.).

In this thread (link below), I attached a link to a Youtube demo of inserting the tube. The girl does a great job demonstrating but she is very precise, so it seems to be a long process - in reality, it takes Stephen 10 seconds to do it. Also, if you/he finds it's hard getting the tube in one nostril, try the other - it's okay to only use one side if it feels better (ie for almost two years, Stephen's only used the left side).

http://www.crohnsforum.com/showthread.php?t=36345

Good luck!!!
 
Thanks tesscom I watched the video and my son was overhearing and kept saying what do ya mean it doesn't hurt? I will be looking forward to that day and to the day he can stop the formula, trying to be positive for him but jeesh I feel like what's next?

[/QUOTE]
 
Is your son Not able to eat any foods at all? What about that nutrition drink called absorb plus. I think if you go to absorbplus.com you can read up on it. It is very expensive, but from what I have read, it tastes better than some of the other ones out there. It has everything ones needs as far as nutrients go.

Also, not sure if this is an option,but they can put the feed tube abdominally if he just cannot stand the tube down his throat. I feel for him, I mean I honestly do not think I could tolerate it ( more so due to my awful sinus issues), I would get infections like crazy I am sure. Also, maybe there is a way where he can use a pediatric( very small) feeding tube so it is not as irritating. Maybe look into the absorbplus stuff or possibly a different supplement that maybe he can tolerate drinking. I am so sorry and I Hope your son gets past this and feels better soon...







Thanks for the info from your son's experience. I told the doctor M was pigging out on crackers (if that's possible) and he didn't say anything but it really makes him feel better and over two weeks just drinking the formula was just nosy happening! I think the doctor feels like this is a concession to help him transition to the nose feed. Which he just hates and it will be 24 hours for a while until he can tolerate a faster feed
Right now we are just trying to slow the diarrhea enough so he can stay hydrated at home
Progress but very slow!
And the NG tube was a mini disaster for me to insert, I am dreading that again. M doesn't think he could do it himself yet.
 
Well the enteral therapy is designed to give bowel rest and it's supposed to be for 6 to 8 weeks. The doctor is giving him concession to have some crackers and the NG feeding works slowly to give him nutrition at a speed where the intestines can absorb it. Like 2" of rain in an hour will flood your basement but over 24 hours will be absorbed in the soil.:dance::thumleft::thumleft:
 

Tesscorm

Moderator
Staff member
Ihurt is right asking about the size of the tube! My son's is 6FR - child/infant size but my son is 165 lbs and almost six feet! If it's worked for him for two years, I'm sure it'll work for anyone! It's very small, no bigger than a strand of spaghetti... If your son's tube is thicker, ask if you can try a thinner one.

Also, if it's hurting while inserting, there are numbing gels available that you dip the end of the tube into... my son's never used them, but I've seen them mentioned here.

And, make sure your son is drinking water as you insert the tube - he will, in essence, 'swallow' the tube with the water.

:ghug:
 
Yes, for sure drink water when putting the tube down. I had to go through a couple tests (esophageal manometry) where I had to swallow a tube( kind of thick one too)and drinking water made it sooo much easier.

I agree with Tesscorm, the 6fr size tube would probably be easier to use and more comfortable for your son.






QUOTE=Tesscorm;609794]Ihurt is right asking about the size of the tube! My son's is 6FR - child/infant size but my son is 165 lbs and almost six feet! If it's worked for him for two years, I'm sure it'll work for anyone! It's very small, no bigger than a strand of spaghetti... If your son's tube is thicker, ask if you can try a thinner one.

Also, if it's hurting while inserting, there are numbing gels available that you dip the end of the tube into... my son's never used them, but I've seen them mentioned here.

And, make sure your son is drinking water as you insert the tube - he will, in essence, 'swallow' the tube with the water.

:ghug:[/QUOTE]
 
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