No relief, 9 months

[Arttillygirl]

Prom is Friday, not sure if my 18 year old vegetarian daughter will make it. She has tried several meds and always at a 3 or 4 out of 10 pain. Tried Paleo and salmon for several months now bleeding and diarrhea returned. She's on steroids and starving and don't know what to eat. Low residue? Paleo? Selective carb? It all seems useless. Monday we discuss remicade. I don't really expect any answers here but if anyone has something we haven't tried, we are open.
She isn't a candidate for stool replacement therapy.

 

[Tesscorm]

Have you tried Enternal Nutrition (EN)? Either 'exclusively' (means no food, EN formula only) for a few weeks or the formula can be used as a supplement. As a supplement (and it can be used with any medication), it will provide necessary nutrition when she is unable to tolerate a full diet.

My son did exclusive EN for six weeks to induce remission, however, as a method to induce remission, I believe it has more success with small bowel disease rather than large bowel (but might be worth asking your GI??). But, I stress that as a supplement, it can help immensely.

My son ingests his formula through an NG (naso-gastric) tube overnight, however, there are a number of drinkable shakes - Peptamin, Elemental, Boost, Ensure, etc.

Good luck!! I hope your daughter is well enough for her prom!!! And that you get some guidance on Monday from her doctor.

:ghug:

 

[mugsymagoos]

Hi there!

I have an 18 year old daughter with Crohn's also, diagnosed when she was 12. She has been on every med imaginable, (including Remicade) but most recently just started Stelara. As far as diet, its hard with kids and teens. I know with my daughter we did do SCD at one time, but she would give us a hard time about eating this or that, we also did juicing for a while also....I know it must be even harder being a Vegeterian! My daughter is a pretty picky eater, and will be leaving for college in August, so we let her decide on what she is gonna eat at this point. So far since starting Stelara a couple of weeks ago, she is doing OK. I hope it continues, and I hope your daughter goes to her Prom! Mine just went to hers recently also!

 

[crohnsinct]

FWIW - my daughter is on Remicade and doing very well. 14 months now. She also did a stint with EN to help the Remicade out at one point about a year ago.

Good luck with your decisions and I hope she gets to go to prom!

 

[Arttillygirl]

Thanks everyone. Just so discouraged, we really thought this was going to be manageable. Ill bring that up on Monday, the EN. I really want this under control, whatever it takes. My daughter has been so faithful with the diet . I'm so pleased she got the college that she wanted and that its close by, silver lining.

 

[Sascot]

Sorry to hear your daughter is struggling. I hope you manage to get something that helps soon. I agree with the EN - my son had 8 weeks exclusive EN through the NG tube (he hated the taste) and it certainly helped him - he hasn't had a tummy ache since, though his disease was mild.
As for diet - it's a difficult subject. Our docs and dieticians say that kids should be able to eat whatever they want and only cut things out if it causes pain or tummy issues. "There is no scientific evidence that a change in diet will help" is their general answer when I ask. However I do tend to cook all vegetables so it's easier to digest, peel all fruits (even grapes) and avoid nuts/seed/popcorn.

 

[alex_chris]

I hope remicade is getting her constant inflammation under control.

As said above, EN is an option when you got problems with diet, in my experience you just need to be careful to only have the "neutral" flavor, because for me any other flavor was just way to sweet + these bottles aren't really tasty, but still should not be only drunk slowly.

Anyway, my advice would be to concentrate on getting the long-term drug management of Crohn's sorted out. When you say she is on steroids, I assume you mean corticosteroids (pred, budesonide etc.) - that would definitely not be a long-term solution. Has she tried immunosuppresives like azathioprine or 6mp?

Re diet, what I would try are things like polenta (watery one), all kinds of unsweetened/unsalted porridge (e.g. oats porridge) or semolina porridge. Other things people can sometimes manage is lightly cooked chicken pieces either with rice or very mild potato mash (be certain those are salad potatoes you use and double peal them).

Regarding going to the prom tomorrow, if she rests today and tomorrow and eats neutral foods only, she might be somewhat alright. I hope it works out for her and that she doesn't miss prom.

 

[Arttillygirl]

Just discovered poop sample showed infection so antibiotics are next. Crossing our fingers that its the cause and we haven't taken two steps back.

 

[Dexky]

Hi, I tried to find it on your intro thread but see it turned into a spat about meds, so I'll just ask. Has she tried any other meds besides steroids?

 

[Arttillygirl]

U C daughter

Asacol headaches
Lialda no effect
Short term steroids twice
(kinesiology - dumb and expensive)


Now:
Pentasa
VSL probiotic
Cipero (just stopped in favor of another antibiotic)
And antispasmodics as needed
Started suppositories again for heavy bleeding
Selective Carbohydrate Diet, Paleo vegetarian diet (plus salmon) 2 months
No dairy or meat for years now

She's feeling better today....Prom tonite! Yay!

 

[LJS]

We also just started EN 2 weeks ago, although not exclusive. Our docs believe that kids should eat pretty much what they want an only cut something out if it's causing an issue. So my 9 year old son puts the NG tube in every night, feeds for 10 hours with formula overnight and we take the tube out in the morning and off to school he goes! So far, so good! he did have a tummy ache yesterday but I dont think it was crohns related..

 

[alex_chris]

Asacol headaches
Lialda no effect
Short term steroids twice
(kinesiology - dumb and expensive)


Now:
Pentasa
VSL probiotic
Cipero (just stopped in favor of another antibiotic)
And antispasmodics as needed
Started suppositories again for heavy bleeding
Selective Carbohydrate Diet, Paleo vegetarian diet (plus salmon) 2 months
No dairy or meat for years now

She's feeling better today....Prom tonite! Yay!

If she hasn't tried immunosuppresives (azathioprine or 6mp) before, she might try them (alongside Pentasa) before starting with remicade.

Anyway, I hope she has a great prom tonight! And that you guys will be able to manage her Crohn's long-term (via meds but also via stress relief/diet etc.). Sounds stupid at first, but has she tried yoga (the more sport-like variety, not just the meditation sort)?

 

[Dexky]

Started suppositories again for heavy bleeding

Steroid suppositories? I hope you all consider the biologics. Just my uneducated opinion but I'd rather the bios than steroid dependency. She sounds like a tough case! Good luck!

 

[Arttillygirl]

If she hasn't tried immunosuppresives (azathioprine or 6mp) before, she might try them (alongside Pentasa) before starting with remicade.

Anyway, I hope she has a great prom tonight! And that you guys will be able to manage her Crohn's long-term (via meds but also via stress relief/diet etc.). Sounds stupid at first, but has she tried yoga (the more sport-like variety, not just the meditation sort)?

Yes we do yoga, tried hot yoga before she was diagnosed. anyone tried acupuncture?

 

[crohnsinct]

Haven't tried accupuncture for my daughter's Crohns but definitely for a bunch of other things.

If she is having pain or nausea maybe it could at least give her some relief.

Did she get off to prom o.k.? I hope she has a great night. Post pics if she doesn't mind!

 

[CarolinAlaska]

I hope your daughter has a great time at Prom! Sorry she is having a rough time of it. My daughter did the EEN and had good results, but ended up having to use the NG tube 24/7 for 5+ weeks because she didn't tolerate the drinkable formulas. Now that her tummy is settled down, she is drinking it again without problems (mixed half and half). She really didn't get to be pain free until her 6MP kicked in this week (after about a month on it). It's the first time she has been pain free in her tummy since she was a baby, I think! She is on a slow reintroduction diet right now...