? about flare ups

How old is your daughter?

If she has celiac disease then she certainly will feel bad from eating gluten. You and she should be doing your very best to keep her gluten free. Even when her Crohn's is in remission she is going to be bothered by gluten.

Remission should be the absence of any symptoms. That means solid stool, no blood, no mucous. Also no elevated inflammatory markers in the blood, proper levels of iron and hemoglobin, vitamin D, b-12. No joint pain. No nausea or upper GI pain. The people who post on this forum are likely the ones who find achieving remission really challenging. The folks in remission are not here, they're off having their life, LOL.

Hi Mary! First off I must emphasise that I'm no expert - I think it varies very much on a case by case basis, and I can only tell you my experiences in regards to flare-remission cycles. It sounds like your daughter was indeed diagnosed during a flare, and it's a relief to hear that Asacol managed to significantly reduce the inflammation.

Personally remission for me is not a perfect state of health, but rather when the inflammation has died down enough to be able to have more good days than bad days. If symptoms are acute during flares, then during remission they are much lessened but not always gone. For instance I don't usually experience the acute pain associated with my flares whilst in remission, but I do however experience periods of mild and moderate pain- as such I'm becoming an expert in differentiating remission pains and beginning of flare pains ;) Medically though, remission -should- be the absense of all symptoms. I think the important point is reaching a point where symptoms become manageable. For your daughter this may only require Asacol - but she should also be aware that if she is still struggling with certain symptoms whilst in 'remission' then there are an array of symptomatic drugs which can help with specific issues :)

One person might suffer more ill health during remission than another, it's dependant on a whole host of factors - including type and location of IBD (eg. located in the ileum vs gastro-duodenal), complications such as scarring and the existence of other health concerns. Also it's important to note that those with more symptoms during remission are more likely to stick around the forum! I think in your case there's a lot to be positive about - your daughter has been diagnosed early and her inflammation has been treated without the use of steroids, immunosuppresants or biologics which suggests she should be able to maintain a good-quality remission :)

In regards to diet I'm a little reluctant to comment. My symptoms can be very directly affected by what I eat, but that's primarily because my Crohn's runs from my oesophagus to my jejenum and I have a lot of gastro-duodenal scarring which means a lot of liquid feeds. Primarily upper GI inflammation is pretty rare, so my experiences are unlikely to be transferable to your daughter. What I can say is that with Celiac Disease gluten should be an absolute no-no. Additionally a lot of people find highly fiberous foods, fats and caffeine to be an issue - but problem foods can be very individual. On the forums you'll find people doing various diets from LOFLEX to SCD which appear very effective for some people, and are always worth a try.

I wish you and your daughter all the best!

For perianal Crohn's I hope her DR has prescribed mesalamine enemas.

I imagine it feels like a huge challenge to get your developmentally delayed child to communicate clearly about how she's feeling. It is a challenge for me too and I'm an adult with a normal IQ. It is simply difficult sometimes to clearly communicate what is going on inside your gut, especially when the changes can be subtle and kind of creep up on you.

kazbern said...
How old is your daughter?

If she has celiac disease then she certainly will feel bad from eating gluten. You and she should be doing your very best to keep her gluten free. Even when her Crohn's is in remission she is going to be bothered by gluten.

Remission should be the absence of any symptoms. That means solid stool, no blood, no mucous. Also no elevated inflammatory markers in the blood, proper levels of iron and hemoglobin, vitamin D, b-12. No joint pain. No nausea or upper GI pain. The people who post on this forum are likely the ones who find achieving remission really challenging. The folks in remission are not here, they're off having their life, LOL.

I echo what Kazbern says here (cept about folk in remission posting here,i'm in remission (touch wood) as far as i know (no symptons /pain and normal BMs since being DX and treated with entocort, i'm lucky in that i've always been able to eat what i like but a lot of folk find altering their diets helps with flares etc, i hope your daughter continues to feel well, Slainte