Diet advice which one do we choose ?

[Lewiss mum]

Hi everyone just wanted to have some advice Lewis is on infliximab infusions and has gone to every 8 weeks , we have seen massive benefits he hasn't had. An abscess for 6 weeks , but he still wakes with tummy ache he has been getting stomach on and of all week during the day which is new for him , we don't give him any fried foods , sugars , were going to cut out wheat dairy , gluten and see if this works , to be onset I don't no what the trigger is for the pain I've thought about doing EN then introducing foods but don't no much about it I'm still waiting for an appt. with the dietician but want to start helping him now, my husband dosnt want hi to have EN as he thinks he wont tolerate the drinks all the time and no food he can tolerate the 1 drink we have started giving him one a day to boost his weight growth which has helped, any diet advice is most welcome I really do think its food related and just hope it hasnt progressed to his small bowel as it is already in his rectum and colon.x
thank you,xxx

 

[crohnsinct]

Hmm..sorry no real diet advice here as foods aren't one of my daughter's problems, but I would say unless you truly need EN to control a flare etc then I wouldn't pull it out as I think your hubby is right (much as it kills us to admit it) if you do it too often then when you really need it the kids might balk.

MLP has lots of food related experience with her little one, I am sure she will be a long shortly to help you figure out the best way to find the offending food(s). I am sure your docs office will also have some good advice.

Good luck and glad to hear the Remicade is working well.

 

[Tesscorm]

Food isn't a problem for my son either. However, we were told to avoid seeds (not just sesame, sunflower, etc. but also the seeds in tomatos, berries, etc.), nuts (nut butter is fine, just not pieces of nuts), veggie/fruit skins and popcorn.

These have all been relatively easy to remove from his diet... for fruit, I tend to stick with melons, pineapple, oranges and peeled apples, etc. (he's not much of a veg eater anyway...).

Low residue/fibre diets are easier on the GI system (although they will not provide all the necessary nutrition for long term). And it just recently dawned on me that it seems, due to his own taste preferences, he's ended up with a diet that leans toward being low residue/fibre (although he does eat whole wheat bread w/out seeds, etc.). My son, however, continues to do maintenance EN five nights per week (uses tube overnight) - this provides him with lots of the nutrition he may be missing through his diet.

When I asked our dietitien about special diets, she didn't believe diet affected crohns (although it can affect symptoms) but her thought was that when people tried special diets (ie gluten free, paleo, etc.) and then felt better, she believes it was due more to the fact that by following any/most of these diets, people are just eating healthier (ie little to no processed or junk food in these diets). Whether she's completely right or not, I did think her thought re the healthier eating had some value.

:ghug:

 

[Guest9283]

I've seen many diets over the years, and as a diet fanatic, I've looked at them all closely. I can say though that the scd diet has had the most success by far in terms of how many people I saw get turned around by it. It's a super hard diet to maintain for long term. That's the problem, everyone seems to slip after 2 years with keeping the diet, then they flare. I'm sure sometimes the crohn's is too active for the diet to help. At this point meds and diet might be better option

 

[muppet]

In my 30 years of experience, a low-residue, no dairy, no-spicy diet has worked very well for me, personally. I could never stay on SCD, it's too rigid, although I suspect it's probably the best one.

 

[my little penguin]

At work
I have a lot of info I will post tonight

 

[my little penguin]

Couple of things-
EEN can help with ibd but mainly in the small bowel so if its in his rectum and colon then its less effective.
One thing we found with Ds and our rheumo agrees is that our kids have been inflamed SOOO long once you start to get the inflammation down the stomach/gut is still working in overdrive as if the system was inflamed so you will still get cramping for a while until the body gets used to not having to work as hard.
It makes sense and after 3 infusions things have been slowly improving.
DS's stomach pain is almost none existent.

For Food keep a daily food diary of what he ate when how much and symptoms (time after eating) to look for trends.

Randomly pulling all foods is not recommended.
If he just started remicade then he may need more time.


YOur little one may be getting hidden food- in other words milk in products if you do not read the labels fully.

Big protein molecules are the hardest on the system
Milk, wheat(gluten),corn etc..
you may want to have him go 50/50.
WE have DS on 2-3 shakes a day plus food.
It helps with his weight and possible disease.
Neocate makes juice boxes of formula ( amino acid based)
https://www.neocate.com/shop/c-6-nutricia-category.aspx

Elecare junior
http://www.abbottstore.com/therapeutic-nutrition/elecare/icat/elecare&source=ele

Nestle makes peptamen junior.
http://www.nestlenutritionstore.com...on?rank=6&v1=rank&asc=1&catpath=pediatric.2.2


Are all nutritionally complete formula
not sure of formulas in the UK.
What has your GI said?
We have a tens unit for when Ds's pain gets bad- no meds and it helps lower the pain. A nice back up to have.

 

[crohnsinct]

One thing we found with Ds and our rheumo agrees is that our kids have been inflamed SOOO long once you start to get the inflammation down the stomach/gut is still working in overdrive as if the system was inflamed so you will still get cramping for a while until the body gets used to not having to work as hard.

I never heard that before. Thanks MLP! Explains a lot to me now. This is why I love the forum...learn something new (sometimes useless see Much Ado) everyday!

 

[Lewiss mum]

barium meal test

hi everyone thanks for the advice . we've been through a few bad weeks with Lewis. he's had a stomach bg which knocked him for six . he lost lots of weight his sickness and pain was so bad we had to go to the hospital . they've scheduled his infliximab for not week as before it was going to be a we late . sob told them he needs it on time u are gone have to find a space to fit him in . he's doing alto better. he's now taking omeprazole and buscopan i think that the might be doing a baptism meal test as he's getting lots of pain in the mornin and after food . hopefully its not moved to his small bowel as his bum answers colon were he only places they checked . but with new pain and loser stools they gone test him. the doc has spoke about methotxate i think its spelt like that swell as the infliximab . does anyone have any history of this are the risks better than the sideEeffects .xxxx

 

[kimmidwife]

We used methotrexate but no together with the infliximab. Caitlyn had no side effects from it but it stopped working after 20 months. We don't have much experience with diet since Caitlyn has never agreed to follow one and our doctor has not pushed it.

 

[Lewiss mum]

thanks kimmimidwife . the infliximab only seems to work for a few weeks important hoping thingsvwill set themselves good . i was a bit blinded i though once he was on infliximab hed go straight into remission but were still having .x

 

[my little penguin]

Hugs ... We are in the same boat.
DS is good for a few weeks (4 ) then starts to go down hill again.
Our Rheumo wants infusions every four weeks Gi every 6.
We see both docs this week to discuss.
There has not been any mention of Mtx yet ...
Hoping we can just stay at every four weeks.

 

[Farmwife]

No real advice just hugs!

 

[AZMOM]

Im with muppet. We do low fiber-low residue during flares. There's a book Claires ped GI in AZ recommended at dx. Here's a link so you can see:

http://www.amazon.com/gp/aw/d/0981496504/ref=redir_mdp_mobile

The author is a dietician with IBD.

I second the recommendation for food diary so you can eliminate what bothers him most.

Hugs - hope you find what works best for him!

J.

 

[Irene3]

I agree with muppet and AZMOM. Many people say SCD is best, I even wanted to try it, BUT, my gi, and most by what I've read, say low residue is best for crohns symptoms. Another thing you should consider, is with no wheat, dairy etc, your child would need a lot of fruit and veg on Palio, SCD etc. but in crohns, not only are the fiborous foods the hardest to digest ( most painful), but they can cause stricturing in an inflamed bowel, which can not later be healed with meds , only surgery can help at that point. And not just nuts like almonds etc, but raw veg- carrots etc, can easily cause strictures. They did for me, so be really careful with diets! I was convinced that diet could improve my crohns and it made it much worse. Best wishes xoxo

 

[Lewiss mum]

thanks for the advice peeps . Lewis is not well agaiN he's gone Einstein school his bum has been hunting for two ds . when i take him to the hospital like last week they say well he's not temp na disable out si his sphincter but i no that somethin could be going on insideI've stressed this to them but its as if important talking another bloody language. they justvsay let get his pain underr control important worried he's getting another fistula but further in he's booked in for infliximab tomorrow . my hobby is coming aswel so were gone tag team on the docs he can't go on being in pain and taking
painkillers all the time its no god for him. i hate the fact this bloody disease. is taking over our life e can't even plan to do anything or go for a day out cause we don't no how he's gone be . aim gone speak to the hospital tomoz about a specific diet they think we should do and i.ll tell them of all his trdiggers . sorry fr ranting important a tired stress mum today .xx

 

[upsetmom]

Sorry to hear Lewis isn't well..:hug:

 

[Farmwife]

I'm so sorry to hear this.
You shouldn't put up with this.
Good idea about brining the hubby with you.
Make them explain what you see in front of you.
Don't take stupid excuses either.
I did for way to long and regret it know.
Hope it goes well.

 

[Sascot]

Don't blame you for being stressed! Been ranting myself the last couple of days - can't get anyone to help us either, so I am happy to listen to others ranting.
I hope you manage to get the doctors to listen to you and your hubby and they get something done asap!

 

[DustyKat]

I'm so sorry to hear that Lewis is still having problems, bless him...:hug:

Did you manage to get onto the hospital and get some dietary advice?

Dusty. xxx

 

[Lewiss mum]

hi thanks for all he support Lewis had his infliximab al went really well his pain is better they've given him omeprozle and update it to 40 mg. .mebeverine and domperidone tobtake every day for 3 monhsits helped with his upper gastro pain and his spasms we think he was starting with another access but the ifliximab seems to have sttld things down but reducing any inflammation . they giving him hiatus infusions every 6 weeks now and it his pain or symptoms get worse whilst Jan waiting this time for his met treatment they gone start him on azitprine sorry don't no how to spell it and i have predictive txtthat makes me spell like a Child has anyone else used infliximab and azitprine. do u hinkbit works i no utter take a while to kick in doant it is the me risks . my doc did say he would need
weekly bloodshed why would this be. hope your all well.thanksfor all the advice I've received ln hear just hope one day i can help someone else and say I've been there done it warn the shirt and give some advice back.xx

 

[my little penguin]

Aza / 6-mp
Require weekly blood tests to check for liver and white blood cell counts .
Also the Aza levels in the blood.
There should be ast / alt for the liver.
If his levels Go too high they can pull him off the Aza quickly before any damage is done.
So the blood tests are very helpful.
Aza is known to increase the effectiveness of remicade.
There is a rare side effect when the two are combined in older (17 year old males) of t-cell lymphoma. It is so rare it didn't show up in the studies.
They only saw it once the large masses took it.
Glad they are doing something to try and help.
Our Gi also had to tweak DS time frame for remicade.
GlAd it is starting to work.

 

[izzi'smom]

We have done infliximab but not azithioprine (Imuran is easier to spell lol)...glad to hear he is doing a bit better...

 

[Lewiss mum]

Hi guys I just Wana say thank u all so much for ur advice and I feel so cheeky by always coming on here for advice and not rely giving any , I hope in the future as were on this roller lasher of Crohn's for the rest his life I can give some advice back to some who needs it , well were in an absolutely crap week no take that back were in a n absoulute crap time , we feel were stuck in a rut of pain pain oh and more pain , Lewis had his infliximab thurs ...... He had no response this time it was his third infusion . He's now tKing domeridone , mebeverine , omeprazole . Codeine when needed all at maximum strength and nowthe big problem,,,,,,,,, his poo,,, he's takin 20 ml lactulose in the morning 20 night and a full sachet movicol evening ......... Why I no Crohns can go one way or the other usually the other and he's always suffered with constipation but this is a joke the codeine is use spAringy so this isn't the issue , my bid thiks he may have aa narrowing of his retum .............I'm so stressed whA does this mean I no this means the pko dosnt come out properly and looks like toothpaste and sometimes it dosnt come out at all but sometimes his poo comes out o,k what the he'll is going on he's been in so. Uch pain this past two Weeks we've taken him to er 3times our bid is brill she gona ring us with an action plan has anyone else had recatl disease this bad and whT can I ask or do to help him I'm not keen on EN i think Lewis wouldnfnd it very tough and am not sure it would help his lower disease

. Thanks guys.xxxx

 

[my little penguin]

Ds has rectal disease as well as other areas.
He also has constipation when he is flaring despite what the docs first the constipation was just a sign of Ibs in addition to crohn's .
Until the remicade became effective we had to increase his miralax daily (over a capful) keep him on 2-3 peptamen junior - when he decreases the constipation increases - we also have him eat fruit cups ( pears and apples ) soaked in juice.
Plenty of juice, plenty of water.
The reality is when his rectum is very inflamed it doesn't matter - he can hardly go and cries / shakes when he does . He also gets rectal prolapse as a result.
For him remicade was the answer but it took that Asacol, peptamen jr, Zantac to get it under control after about 8 weeks from the start of the first infusion.

Hopefully he can get relief soon.
I would really consider en even if its in addition to his regular diet - it really helps my son.
I wish I had an easy fix to make his pain go away- I know how hard it is to watch.

Hugs