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Daughter needing supplements

My daughter has Crohns. She had surgery - she had part of her colon removed, and the intestines were reconnected. She still has fluid coming out of the incision from the surgery (the belly button area) - and it's been about a year since the surgery. They suspect that there might be a fistula. They did a lot of testing and didn't find anything, so they think that additional nutrition might be the answer to her healing. She feels fine - but things aren't healing. She eats everything and takes Humira for controlling the Crohns.

One doctor recommended Alitraq or Modulen.

Did you ever hear of either of those?
Do they taste okay?
Are these meal replacements or just supplements?
 
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my little penguin

Moderator
Staff member
We have aparents group here
Even for adult “kids “
Modulen is semi elemental formula
Used as exclusive enteral nutrition (formula only no food ) for 6-8 weeks

Mine was dx at age 7
Now is 14
Used peptamen jr (us version of modulen)
He has done een more than a few times

Tagging
Maya142
Crohnsinct
Jmrogers
Farmwife
Pilgrim

http://www.crohnsforum.com/forumdisplay.php?f=49

What maintenance meds are they giving her ??
Remicade
Humira ??

Een is not long term and inflammation will come back once food is reintroduced unless you have a maintenance med on board
 
My daughter has Crohns. She had surgery - she had part of her colon removed, and the intestines were reconnected. She still has fluid coming out of the incision from the surgery (the belly button area) - and it's been about a year since the surgery. They suspect that there might be a fistula. They did a lot of testing and didn't find anything, so they think that additional nutrition might be the answer to her healing. She feels fine - but things aren't healing. She eats everything and takes Humira for controlling the Crohns.

One doctor recommended Alitraq or Modulen.

Did you ever hear of either of those?
Do they taste okay?
Are these meal replacements or just supplements?
Welcome. You might want to try the section on here called Parents of Kids with ibd. There have been threads on here about Modulen but I don't know anything about it personally
 

crohnsinct

Well-known member
Did they say why they are adding supplemental EN? Is it because they found evidence of Crohn's inflammation?

When they did their testing, they didn't find evidence of a fistula? Do they have any theories of why the fluid is still leaking out?

Both of my daughters use exclusive enteral nutrition to induce remission at dx and during flares. Exclusive meaning nothing but the formula and water for 6-8 weeks and then a slow reintroduction of food. If she is very inflamed and in a flare supplemental probably would not take care of the inflammation. There are some studies that suggest once in remission supplemental (a couple of shakes a day) can keep you there. If all her biomarkers, scopes, imaging are clear perhaps the GI's are thinking maybe she just needs a little help? Has she had a fecal calprotectin test? Any symptoms other than the fluid leaking?

Enteral nutrition does not help with fistulas and has a better track record with pediatric patients than adult patients but I definitely have heard of it working for adults.

My daughters drank boost and ensure so sorry I can't help you on take of the two formulas you mentioned.

Paging Maya123 as her daughter has had many abdominal surgeries and maybe she has some ideas on the fluid.
 

Maya142

Moderator
Staff member
My daughter has had one open abdominal surgery. She had clear-ish fluid coming out of the incision when she was recovering and we were very freaked out. It turned out she had a seroma - which is like a pocket of clear fluid under the incision I think. In our case, it drained on its own as she healed.

She was on supplemental nutrition (her surgery was to put in a J tube) when she was healing. She got Neocate Splash through her tube. She had been very underweight and initially tried drinking Peptamen Jr. She could drink it (though it doesn't taste great) but not enough to maintain her weight, much less gain weight. So she went to a feeding tube. She was very against it at first, but once she got used to it, she found it MUCH easier than drinking.

She started with an NG tube which she inserted on her own at night and removed during the day, so no one knew at school.

How old is your daughter? Definitely check out the parent's forum, there is a lot of info there.
 
My daughter is 18 - she'll be 19 in August. She is taking the Humira shots every other week.

I spoke with a nutritionist who is going to try Isagenix with her. I think the program will be 2 shakes a day and 1 meal. The goal is to get her nutrition and heal her gut.

Did anyone hear of that?
 

crohnsinct

Well-known member
If it is for healing the gut the most percent of food I have heard of is 20% with 80% being from formula. In addition the meal was a very restricted choice of foods.

2 shakes and one meal does not sound like enough calories no matter what the meal is made of...unless the shakes the nutritionist is planning to use have a lot more calories than the ones we have heard of on this forum.

So she has inflammation? Is it in her small bowel or colon or both? If she is n Humira and still has inflammation do they know why? Is she not responding to Humor or has she built antibodies or is the dose she is on not enough for her (they test t his with a levels test just prior to the dose). Enteral nutrition can get her to remission but if the Humor is not therapeutic then there is little chance she will stay there once she introduces a full diet.
 

Maya142

Moderator
Staff member
Yes, it is usually at least 80% formula and 20% if it's to heal. If it's just for better nutrition to gain weight, then it can be any percentage of the kiddo's diet. Based on what your nutritionist said, it seems like your child's gut needs to heal, in addition to her incision?

So then your daughter needs to be on 80% formula, which is generally 3-6 shakes, depending on your daughter's needs. So if she had a 1600 calorie diet, 1280 would come from shakes and the rest from food. Which is usually one small meal.

If it's just to increase nutrition to get her incision to heal, then I would think she wants your daughter to eat normally in addition to these shakes.

I haven't heard of Isagenex. Does she see an adult GI already? I guess we all know only the pediatric formulas (and my daughter is 21!).
 
I have to agree with what the others have said a shake or 2 a day for additional calories but doesn't quite sound right. We've done several shakes a day to increase calorie intake and promote growth a one point and have done 100% shakes and that was 8-10 a day to promote healing and he was 14 at that time.
My son is the same age as your daughter 18 (19 end of July).
 
The nutritionist wants to cleanse her body - and let her body rest. So the shakes will help with that. They are gluten free and dairy free.
There is also another very interesting product that she'll be using. It's a packet of vegetables that she mixes with water and drinks several times per day.

I agree - that she needs to intake calories.
The nutritionist knows someone that will cook for her - we will purchase meals and snacks that are specifically made for her and her nutritional needs.

The biggest problem I see is that she will have to eat everything and not worry about being different than her friends. She has said more than once - "I just want to be normal"

And she doesn't have any friends that have Crohns or other stomach issues.
And she doesn't want to tell her friends

But she is getting older and will have to figure this out.
 
Oh yes the "I just want to be normal" comment I think we've all heard that. It takes a while to come to acceptance. It's a grieving process and she is grieving the life she thought she would have but there is hope and there is remission. Eating is a huge social part of life. My son was on EEN as a freshman and went to homecoming not being able to eat at all. It was tough. He ended up going to the nurses' office every day for the first part of lunch since he could not eat and it was hard sitting with everyone eating while he had his shake.
It can take some time and trials of different combinations of medicines, foods. I think anytime there is a flare or a change the process can start again.
My son initially did not want to tell anyone then he told his best friend at the time (he was 10) and she was the only one who knew for several years and would cover for him when he was having issues. It's been 8 years and he doesn't care who knows now. It's not the first thing he tells someone but he certainly doesn't hide it either.
I don't know if she wants to chat or be connected with someone else with Crohn's but my son is always happy to connect with other "crohnnies".
 
Thank you. That's so nice and special of you.
She's not there yet. But it would be nice for her to accept things and know that she's not alone in this world...
 

Maya142

Moderator
Staff member
So your daughter will be having two shakes a day - I'm assuming the shakes are 250 calories - so 500 calories. And one meal. That does not sound like enough... What else will she be eating? I'm just worried between the vegetables and just two shakes, she won't get enough nutrition.

With IBD, she needs extra nutrition - my daughter needed 2400 calories to gain weight and she was only 82 lbs and 5'2. Some teenagers have needed even more because they are athletes (3000 calories).

As for the shakes, there are lots of ways to disguise them. Get her a steel water bottle that will keep them cold (they tend not to taste great so being cold helps) and let her say what she wants. Chances are, no one will even ask. But she could say she's having a smoothie or milkshake or something like that.

Is she underweight? I understand wanting to let her gut rest - that is done often in IBD. But the whole cleanse her body thing?? Is this a nutritionist who knows IBD? Because I have never heard that and because my daughter was severely underweight for many years, we have seen MANY nutritionists.

Generally, Exclusive Enteral Nutrition is the best way to let the gut rest. That is more shakes - 100% formula usually, though sometimes 80% formula is allowed. The other way is TPN (IV nutrition) but that comes with risks so is only given when absolutely necessary.

Two shakes a day won't be enough for her gut to rest...and the packets of vegetables is not something I've ever heard of. Vegetables can be tough for IBD kids because of the fiber. Honestly, the whole purchasing food and these vegetables packets does not sound right to me...To quote my daughter, it "sounds sketchy."

I'm going to tag other parents:
crohnsinct
my little penguin
Pilgrim
pdx
Farmwife
 

Maya142

Moderator
Staff member
As for your daughter wanting to feel normal, is she seeing a psychologist? My daughter was diagnosed at 16 and absolutely refused to see one. But her GI insisted - said all kids/teens with chronic illnesses need help learning how to cope, and finally, after a lot of fighting, M saw one.

It much a HUGE difference. Not immediately, but over time. I would encourage you to find someone who sees teens/young adults with chronic illnesses. Your GI may be able to direct you to one (if she is still with her pediatric GI, they may even have someone on staff).
 

crohnsinct

Well-known member
Is this nutritionist in practice with your GI? Is she a registered dietician? People with Crohn's really need a dietician. They are specifically trained to deal with people with medical issues. A nutritionist does not necessarily have the training and education or the national certification that an RD has.

I have heard of those packets of vegetables. I ran them by our physicians and while they all said they would not hurt, none of them were able to find peer reviewed scientific research on them and they all doubted they would help her IBD.

As to the feeling normal...well, that comes with time and healing. Honestly, once in remission there is very little that is different between them and their friends. After the first year or so my daughter ate what she wanted, attended school regularly, was in many clubs at school, church youth group and on the Varsity swim, cross country, indoor and outdoor track teams. She is off at college now and living a very full and complete life and this is even with a flare that has lasted almost two years now.

The only things my daughter has missed out on were an occasional big race due to a flare or a mission trip to a developing country due to the fact that she couldn't get the live vaccine. But most kids miss something at one point or another. Some miss the big game, concert performance, drama production etc due to mono, acl tear, death in the family etc...our kids just miss things sometimes due to Crohn's.

My daughter found her friends and classmates very understanding of her formula diet and even her urgent and frequent trips to the bathroom during a flare. My daughter has even had accidents that her friends were very understanding of. Kids these days are very dialed to differences and accepting. But I understand even if there are accepting our own perception of the situation is different.

I second the suggestion of getting her in with a psychologist who specializes in kids with chronic illnesses. many pediatric GI's have one on staff as part of their practice, along with a registered dietician.
 
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