Diagnosed 24 hrs ago with NO information.

[donbert61]

I am new to this forum and this disease. My 21 year old daughter was diagnosed 24 hours ago with Crohns.

She had been diagnosed with erythema nodosum 2 weeks ago and her family doctor said it was idiopathic and probably not related to any disease. Days later her foot/ankle became very swollen and a doctor at a walk-in clinic prescribed Celebrex. At this time she was referred to an internal medicine specialist. Thursday of last week the bloody diarrhea started and needless to say, we stopped the Celebrex immediately. We thought she had had an allergic reaction to it.

At this time she was referred to an internal medicine specialist who ordered an autoimmune panel, which came back clean. She ordered a specific blood test for lupus as well as a celiac panel. Friday night she had a temperature and we went to emergency. They did chest, abdominal xrays as well as a CT scan of her chest as she had a cough. The ER physician asked if there was any family history of IBD and we told her "No".

Fast forward to another visit to emergency on Monday and a colonoscopy on Tuesday bringing us the diagnosis.

The Dr. went over the plan: antibiotics, prednisone starting on Friday dependant on biopsy results, an office phone number and an appointment for a month from now. We were also told that our daughter is "very sick" and if she gets "sicker", come to the hospital for admission. That's it: no pamphlet, no info pack, no advice...nothing!

My daughter still has bloody diarrhrea, has lost 6 pounds since Friday (she is now 99 pounds). We tried an Ensure Plus this afternoon and that didn't go well. We have had success with gluten free toasted bread with a tiny amount of seedless, low sugar jam. She has had 4 slices today and that's it. Is this a "victory"?

Are there other foods that she may have success with that anyone could recommend? Should she even try to eat at this point???

I am sorry for the rambling post but we have been left in the dark. We are in Canada, so we aren't able to "shop" around for different specialist. Any ideas or advice would be greatly appreciated. Thanking you in advance.

 

[Catherine]

Welcome to the forum.

In some ways this is the hardest time, you have a dx of Crohn's Disease and you just want to start treating it, but you have wait for the biopsy results to come back.

Apple sauce, mashed potatoes, mashed bananas?

There are a lot of great parents on the parent's forum. Hope to see you there.

My daughter was dx at 16 years and is now 19.

 

[Jennifer]

Hello donbert61 and welcome to the forum.

The forum's wiki entry on Crohn's has tons of information from the definition to possible treatment. http://www.crohnsforum.com/wiki/Crohns-Disease

I think a liquid diet could be beneficial at this point as it is almost as effective as steroids at reducing inflammation. http://www.crohnsforum.com/wiki/Liquid-Diets You could try enteral nutrition if Ensure isn't working out. If she isn't able to do either then you can make homemade soups and have her drink just the broth. Was it the flavor of the Ensure or is she not able to keep it down? If you do try a liquid diet then be sure to inform her doctor so they can help monitor her and so they know how bad her symptoms are.

If her pain or blood loss become extreme or if she isn't able to hold down liquids then you may need to take her back to the hospital for treatment. I'm sure they're waiting for the biopsy results before prescribing any other medication as both antibiotics and steroids are temporary.

Keep us posted on how she's doing.

 

[AlicePamela]

I would recommend a liquid diet; I was on this for about a week and half and let my stomach work itself out. I basically ate ice cream, jelly and mashed potato. Then after that I gradually ate more bland foods, such as pasta, chicken and rice. Its been 4 weeks and I am on a restrictive diet for crohns, have to say I feel alot better and have gained some weight.

 

[donbert61]

Jennifer, it was the Ensure Plus Chocolate. I purposely avoided Vanilla as I read that a couple of people in this group couldn't tolerate it.

 

[Pilgrim]

Smoothie made with good yogurt (plain maybe Greek or balkan style) and then other things for calories or flavor. You could try hiding an avocado or peanut butter in the mix for fat . Banana usually goes down ok.

Make sure she drinks a lot of fluids too, she'll be getting dehydrated from the D.

Sometimes people can drink the Ensure which is not "plus" a bit easier. Not as thick tasting.

 

[Mr chicken]

Tagging Tesscom
As well

If the oral pred doesn't work they can give her iv steriods in the hospital if things get any worse.
Second the regular ensure or boost
The higher calorie one is harder on the gut
There is also semi elemental such as peptamen or peptide
Easier on the gut - DS could only handle peptamen jr vanilla ( he is 11 now).

 

[irishgal]

Funny you mention e nodosum. I also had that as a leading indicator of my Crohns flares. I was diagnosed at 14, am now 40. I ate a lot of really bland things since that was all that didn't bug me. I had a bit of success on the FODMAP diet, so I wonder if juicing from the FODMAP approved list may be something she could tolerate, or something nutritious but easy to handle like bone broths. Toast was my best friend for a while! I just recently had huge success on an antiMAP therapy, which may work best in treatment naive patients. Something to consider in your long list of stuff to read! This forum is a great resource for all different sorts of treatments and info. I hope she gets some relief soon.