My 14 year old son, recently diagnosed, is now on his 17 day of EN> He has been taking Modulan orally, at this stage he is taking in between 2000 and 2250 cal/day. He had a problem with constipation last week and we had to rush him to the GI, who gave him and enema which sorted things out. Suggested we give him 2 sachets of Movicol on a daily basis until things sort out. Things is my son is so afraid of becoming that constipated again, the pain and blood from fissures really freaked him out, that he is happy with the 2/3 very loose runny BM he is having at the moment. The problem is I am concerned that he is losing the benefit of the Modulan because of this. He has not gained a single pound since beginning the Modulan and he is teriibly underweight. The nutritionist is very satisfied with things and feels that the weight gain will come in time. She is also comfortable with the cal intake which I suggested should be closer to 3000 cal/day according to what I have read on this forum. To make matters worse my son absolutely refuses to stop taking the Movicol for fear of becoming constipated again. We are trying our best to avoid steroids at this stage and I was so confident that EN would do the job. Any help or advice would be so appreciated.::sign0085:
Why no weight gain on EN?
- Thread starter Robs a
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Our experience was that constipation while on exclusive enteral feeding was due to low water intake so you may want to review this with the nutritionist.
I can't speak to the cal intake being right or not. I will say that kids who have been very, very ill and are at 5% or less for weight may need a slower return to normal intake in order to avoid refeeding syndrome developing. I don't know if your son is in this category. You may want to talk with the nutritionist and the GI about this if you are concerned about it.
What does the GI say about continuing to use the Movicol? Maybe he should discuss this with your son.
Day 17 is not very long. I'm sure it feels like forever to you and your family but it's only two weeks and three days. Most people don't see an effect from EN for at least 2 weeks and many not for a full month. Then the first thing that seems to improve are symptoms like pain and urgency. Weight gain is probably about the last thing you will see and I wouldn't expect to see that until he is close to being into remission. His body has to heal itself and use those calories to build brain and bone and organs like it was supposed to do if it hadn't been sick.
He will get better. But you have to give it more time. And remember that EN doesn't work for everyone and sometimes other things have to be used.
It's helpful not to be really negative about any particular treatment especially in front of your son right now because, frankly, you don't really know what treatment is going to be needed to get him well.
None of us want our child on steroids but sometimes they are required.
Hope he gets feeling much better very soon.
I can't speak to the cal intake being right or not. I will say that kids who have been very, very ill and are at 5% or less for weight may need a slower return to normal intake in order to avoid refeeding syndrome developing. I don't know if your son is in this category. You may want to talk with the nutritionist and the GI about this if you are concerned about it.
What does the GI say about continuing to use the Movicol? Maybe he should discuss this with your son.
Day 17 is not very long. I'm sure it feels like forever to you and your family but it's only two weeks and three days. Most people don't see an effect from EN for at least 2 weeks and many not for a full month. Then the first thing that seems to improve are symptoms like pain and urgency. Weight gain is probably about the last thing you will see and I wouldn't expect to see that until he is close to being into remission. His body has to heal itself and use those calories to build brain and bone and organs like it was supposed to do if it hadn't been sick.
He will get better. But you have to give it more time. And remember that EN doesn't work for everyone and sometimes other things have to be used.
It's helpful not to be really negative about any particular treatment especially in front of your son right now because, frankly, you don't really know what treatment is going to be needed to get him well.
None of us want our child on steroids but sometimes they are required.
Hope he gets feeling much better very soon.
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Hi, I see you are from Cape Town - my uncle and aunt live there. About the Modulen, I can see why you are worried. If you want to add a little bit extra, then it won't hurt him - the only thing my dietician was worried about was if you didn't get enough. So if your son is taking the required amount, you could just work out how much powder is needed to increase the calories - even just by another 200/300cal. When my son took it he was overweight so he had slightly less than recommended and still struggled with the amount of liquid. Rather than making your son take an extra drink you are allowed to make it a little bit thicker with the extra powder. I don't see why your dietician doesn't just tell you to give more when your son isn't putting on weight. I am only passing on what my dietician told me, so I am not just making it up as a lay person.
Sascot. Tks for taking time to post your message to me. Actually nutritionist is happy with the amount my son is getting at this stage, I think she may increase his intake more gradually to allow him time to get used to it. In fact at our last meeting she already increased the amount of scoops, obviously the water equally too! I think I am just in a hurry (Patricia56 was spot on ) to see some results particularly in the weight area. It devastates me to see my son looking so thin but you know the weird part is that he was not that ill prior to diagnosis. It has been a year or so of very subtle issues, a bit of D now and again, a mouth ulcer once in a while but most notably a lack of weight gain. This I also let go because surprisingly he has grown about a head taller in the past year and I felt that could be a reason for him looking slimmer. The growth spurt is also quite weird in the context of his Crohn's diagnosis don"t you think? Whew, so much to learn about this crazy, crappy illness!
crohnsinct
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Hi Rob, just getting caught up here and this post caught my attention. My daughter was very ill and underweight prior to EN. She did not gain on EN much but her symptoms subsided and her insides healed. Once healed and off exclusive EN (about 8 weeks) she lost a little bit but that was because balancing her food and shakes was difficult for us. The food made her not want the drinks but the food wasn't enough. Once we cut over to all food she gained 5 pounds. All along though she was growing in height and her blood results were improving so the doc was confident it was doing it's thing.
I was like you in not agreeing on her calorie count. She is a runner and swimmer and burns many calories a day and was not even on the growth charts with regard to weight but they only had her drinking 1,600 calories but it worked!
Sorry, I don't know what to say about the diarhrea and movical.
Good luck and hang in there. He has come so far it would be a shame to quit now!
I was like you in not agreeing on her calorie count. She is a runner and swimmer and burns many calories a day and was not even on the growth charts with regard to weight but they only had her drinking 1,600 calories but it worked!
Sorry, I don't know what to say about the diarhrea and movical.
Good luck and hang in there. He has come so far it would be a shame to quit now!
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My son had lost a little over 20 lbs when he was diagnosed, like you/your son, Stephen had had a growth spurt, so for a long time the 'thinness' was attributed to the growth spurt. 
For comparison, Stephen was 16 (almost 17), 5'10" and 127lbs when diagnosed. His EN formula was Tolerex, he had 3000 cal/night (he had it overnight thru NG tube), 2000 ml. During the first 2 weeks, he gained 6 lbs and then only another 4 lbs over the next 4 weeks. When the exclusive period ended and food was reintroduced, he gained another 20 lbs over the next 6 weeks (and then another 10 lbs over the last year). He continues with EN as maintenance - 1500 cal per night, 5 nights per week and eats a fairly regular diet. So, while EN did take him into remission, most of his weight gain came after food was reintroduced.
One reason the dietitien and I discussed for my son's slow weight gain at the beginning was his activity level. Once he began to feel better, his activity level increased (caloric output) but his intake of calories remained constant. His dietitien was also happy with his progress (as long as he wasn't losing weight) and did not see a need to increase the amount of formula.
My son had diarrhea throughout the six weeks of formula only. Our dietitien had told us to expect this and his BMs went to normal as soon as we reintroduced food. As Patricia mentioned, be sure that he is having enough water/fluids. What also increased my son's fluid intake was that he was allowed broth, clear juices (no fibre) and drinks (ie gatorade), jello, popsicles, etc. during the exclusive period but this doesn't seem to be the norm for all GIs/dietitiens.
As was said above, I would give it a bit more time. Other than the constipation and lack of weight gain, is he beginning to feel better? Do you see any other improvement or alleviation of symptoms?
I have no experience with movical, is there any harm in letting him continue with it? Can you gradually reduce the amount to see if he still 'needs' it?
:ghug:
For comparison, Stephen was 16 (almost 17), 5'10" and 127lbs when diagnosed. His EN formula was Tolerex, he had 3000 cal/night (he had it overnight thru NG tube), 2000 ml. During the first 2 weeks, he gained 6 lbs and then only another 4 lbs over the next 4 weeks. When the exclusive period ended and food was reintroduced, he gained another 20 lbs over the next 6 weeks (and then another 10 lbs over the last year). He continues with EN as maintenance - 1500 cal per night, 5 nights per week and eats a fairly regular diet. So, while EN did take him into remission, most of his weight gain came after food was reintroduced.
One reason the dietitien and I discussed for my son's slow weight gain at the beginning was his activity level. Once he began to feel better, his activity level increased (caloric output) but his intake of calories remained constant. His dietitien was also happy with his progress (as long as he wasn't losing weight) and did not see a need to increase the amount of formula.
My son had diarrhea throughout the six weeks of formula only. Our dietitien had told us to expect this and his BMs went to normal as soon as we reintroduced food. As Patricia mentioned, be sure that he is having enough water/fluids. What also increased my son's fluid intake was that he was allowed broth, clear juices (no fibre) and drinks (ie gatorade), jello, popsicles, etc. during the exclusive period but this doesn't seem to be the norm for all GIs/dietitiens.
As was said above, I would give it a bit more time. Other than the constipation and lack of weight gain, is he beginning to feel better? Do you see any other improvement or alleviation of symptoms?
I have no experience with movical, is there any harm in letting him continue with it? Can you gradually reduce the amount to see if he still 'needs' it?
:ghug:
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DS was on miralax( us version of movicel ) for over 2 years due to constipation.
It does not cause D just soft stool.
He did not gain much weight on EEN either ( 1750 calories a day at 4'2"/22-25 kg age 7)
But once we kept him on formula ( peptamen jr ) + food he has gained close to 20lbs total.
Alot of kids go pure liquid d on EEN but some go the opposite.
I can say even with food and supplemental EN + miralax daily my DS was still able to gain weight. It just takes time for the gut to heal.
It does not cause D just soft stool.
He did not gain much weight on EEN either ( 1750 calories a day at 4'2"/22-25 kg age 7)
But once we kept him on formula ( peptamen jr ) + food he has gained close to 20lbs total.
Alot of kids go pure liquid d on EEN but some go the opposite.
I can say even with food and supplemental EN + miralax daily my DS was still able to gain weight. It just takes time for the gut to heal.
Thanks everyone for your input, every bit of info is so helpful. My son is feeling much better , in fact found him earlier doing an exercise workout, which has got to be a good sign. With our summer holidays around the corner he is determined to try and build his pecs, lats and everything else! Onward we go!
Um, I suggest he consult his doctor before going back to or starting a vigorous exercise routine. And I do mean that.
I don't know the extent of his Crohn's but I can imagine there might be a concern that he could actually injure himself internally if he has ulceration and stricturing. Plus he is using up extra calories that he needs for recovering.
But I could be completely wrong about all of that. I just think it is a good idea to check in with his doctor and his nutritionist.
I don't know the extent of his Crohn's but I can imagine there might be a concern that he could actually injure himself internally if he has ulceration and stricturing. Plus he is using up extra calories that he needs for recovering.
But I could be completely wrong about all of that. I just think it is a good idea to check in with his doctor and his nutritionist.
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I'm a big fan of always checking things with your doctor! :thumright: Better safe than sorry!
But, just to share Stephen's experience, a week or so after starting EN (so, approx. two weeks of being diagnosed), Stephen was able to return to all his activities. These included two different phys.ed. classes (one a 'typical' phys.ed. and the other a fitness class that focused on weights and cardio) and went back to playing on two hockey teams (one on ice, one running). After losing 20 lbs and being sick for a few months, he certainly wasn't back at his peak but he was able to participate in almost all of it. We cautioned him lots of times to not overdo it (and cautioned his teachers and coaches to keep him at a lower pace as well). In particular, I was really concerned with the hitting in hockey (along the same lines as Patricia's concerns about injury) - his GI said that it was fine. The only thing that caused any pain/discomfort was steady long distance running - he did feel pain in his TI area (perhaps the bouncing for a continued time?) - we told him and the teacher to stop the running.
Do check with the doctor but also do have your son respect any signals his body is sending - pain, overexertion, etc. :ghug:
But, just to share Stephen's experience, a week or so after starting EN (so, approx. two weeks of being diagnosed), Stephen was able to return to all his activities. These included two different phys.ed. classes (one a 'typical' phys.ed. and the other a fitness class that focused on weights and cardio) and went back to playing on two hockey teams (one on ice, one running). After losing 20 lbs and being sick for a few months, he certainly wasn't back at his peak but he was able to participate in almost all of it. We cautioned him lots of times to not overdo it (and cautioned his teachers and coaches to keep him at a lower pace as well). In particular, I was really concerned with the hitting in hockey (along the same lines as Patricia's concerns about injury) - his GI said that it was fine.
The only thing that caused any pain/discomfort was steady long distance running - he did feel pain in his TI area (perhaps the bouncing for a continued time?) - we told him and the teacher to stop the running.Do check with the doctor but also do have your son respect any signals his body is sending - pain, overexertion, etc. :ghug:
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Tesscorm it is also the running C had a problem with, although we now know C wasn't doing as well as we thought. But he described it just the way you did, he starts wrestling soon and he isn't going to do the running but will do the other conditioning work. But we also clear everything with GI too. Glad your son is feeling better, Rob.
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All of the above - check wit the Gi
For DS swimming cause "stomach pain"
It is better than it was but don't be surprised .
For DS swimming cause "stomach pain"
It is better than it was but don't be surprised .
Thanks for these insights. The thing is that my son was in the middle of his soccer season when the diagnosis was made. We went to see the GI more as a routine visit and to see if we could get some clarity on why my son would often feel exhausted, his iron was slightly low and over the past year he had had some minor cramps and D. None of his symptoms were in fact that severe, and to date thankfully he has not really had any major flare up. . He is not in any kind of pain and the EN is actually making him feel quite good. ISo it is difficult to dissuade him from enjoying his regular outdoor activities, soccer, surfing and tennis. I have however, left a message with both our nutritionist and the GI to confirm that it is ok to exercise. Thanks everyone.
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I so understand!! Virtually impossible to slow them down when they want to go! I was on pins and needles at every game! We just kept reminding him that he had to listen to his body, that if he didn't, he would only cause setbacks and create more delays for himself at getting back to his full strength, etc. As tough as it is, sometimes we have to trust their judgement too. :ghug:
We just kept reminding him that he had to listen to his body, that if he didn't, he would only cause setbacks and create more delays for himself at getting back to his full strength, etc. As tough as it is, sometimes we have to trust their judgement too. :ghug:
