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Newly diagnosed & overwhelmed would love some advice.

Hi I'm new to this site & new to Crohns Disease! Quick story...I'm a 30 year old mother of 2, son 2 1/2 , daughter 7months. I was diagnosed Oct 2013 shortly after baby #2. Never had symptoms until then, extreme pain in abd., hospitalized 2x bc of it , ran the usual IBD tests, pos. for CD. I have been extremely healthy all of my life , always exercised, never overweight, always been able to eat anything & everything! So this is a huge shock for me! I'm a nurse on a cardiac unit in a hospital so I have seen only the sickest of sick CD patients & this scares me for my future. I would like some advice on some definite foods to avoid. I know everybody's triggers are different but is there a list of common foods not to eat? Also maybe signs a flare up is coming? I do get nose sores like a couple days in advance of extreme abdominal pain, so I'm assuming that May be one of my indications. Also meds, I'm taking Entocort as of right now but my physician wants to switch to azathioprine. Opinions? & should I be taking vitamins & if so recommendations? My physician did discuss this but I want advice from real people living this!!! Thank you so much!! Excited to b a part of this forum!!
 

SarahBear

Moderator
Location
Charleston,
Welcome to the forum, Ashley!

I suggest you try keeping a food journal to pinpoint what (if any) foods aggravate your symptoms. Common trigger foods include raw vegetables, spices, dairy, carbonation and caffeine. Just watch these a little more carefully when documenting foods and symptoms - I wouldn't suggest cutting them out without making that effort to find out whether or not they bother you. You might want to look over this thread, What are your safe and unsafe foods?, to see some of the specific trigger foods forum members have identified.

Warning signs for an oncoming flare are, unfortunately, rather individual as well, if they occur at all. What symptoms do you usually have? An intensification of those symptoms could indicate a flare, as would sudden weight loss or loss of appetite. I would keep an eye on the nose sores, as well - it does sound like that could be an indicator for you.

Entocort is a steroid and therefore not recommended for longterm use. Aza is a maintenance medication - once the steroid has reduced inflammation, the Aza will work to treat the Crohn's itself and put you into remission. I haven't taken Aza myself, but you can find information and others' experiences with it in our Imuran/Azathioprine/6-MP. As for vitamins, I suggest you have your levels checked by your doctor (GP or GI should do it with no issue) and supplement accordingly. It really depends on what deficiencies (if any) you have, and blind supplementing can be dangerous.

:hug: I hope things get better for you soon!
 
Welcome! I'm Megan, also newly diagnosed but with UC. It is really scary, especially seeing all those who are worse off. Don't assume that is you. Food is a really individualized thing but for me in active flare I avoid raw veggies (personal worst food) milk (but can tolerate dairy in smaller amounts) and whole grains. I eat lots of white bread, pasta, and things like homemade pizza. It was a hard switch for me previously never eating anything but whole wheat/grain but when in flare... Vitamin for sure discuss with your doc. If you've had blood work done that should show any deficiencies which are common in UC/CD. Big ones include B12, Iron, Vitamin D and Calcium(depending on meds and risks). I'm just starting azathioprine so no help on that. Keep in mind it does take up to 3 months for it to take effect. I'm sure more experienced people on here can be more helpful.

Nice to meet you!
 
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