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New to the Crohn's battle and I need a little wisdom

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Crohn's Disease
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Posted 1/25/2008 3:19 PM (GMT 0)

I recently was diagnosed with CD (Jan 2,2008).  We have begun the medicine game and all that goes with that.  This past Sat. I had a bad flare and ended up in the ER and then 5 days in the hospital.  The hardest thing for me is trying to figure out what is "normal" with CD.  Friday it all started with some cramping, and then it moved into throwing up, and then a high fever.  At the hospital I had 185bpm heart rate, a fever 103.7, and shakes that would knock California off the map.  I have come home from the hospital on 120mg prednisone, 50mg Mercaptopurine, and 2 antibiotics.  I am feeling pretty good now but I stay terrified.

Every small cramp makes me think it is all starting again.  So here are some questions that I have for you guys, that maybe will help me understand what the "norm" looks/feels like.

1- What foods (for you) are trigger foods?

2- Do you randomly have cramps with some foods?

3- If you feel a flare up coming is there anything that you do to try and stop it?

4- What do you drink?

5- Raw veggies? Fruit? Seeds?

6- I have a doctors appointment next week, and I was going to ask for a prescription of sleeping pills (to offset the prednisone effect at night), fenegrine enlight of my episode Sat.  Are their meds. that you keep on hand "just incase"?

 

Thanks for any help. 

 

Posted 1/25/2008 3:34 PM (GMT 0)
Hi and welcome to Healingwell. Sorry you have to be here though. Boy you are on a REALLY high dose of Prednisone. The highest I have ever been on is 60mg. So you needing something to help with the side effects is completely understandable. I will try to answer your questions.

1. We are all individual with what we can and cannot eat. Some can eat certain things, others can't. Try to keep a food diary to record how certain foods affect you.
2. Yes some foods can cause problems and cause cramping, thats why its good to keep a food diary.
3. If I have a flareup coming on, I usually try to go on a liquid diet for a few days, to give the bowels a rest. And slowly start adding back in solids.
4. I personally drink either gatorade or water. Sodas, milk generally don't agree with me.
5. Raw veggies and most fruits other than banana's would usually send ME to the emergency room. I don't eat nuts or seeds.
6. Many usually have to get some type of medication to offset the effects of Prednisone. It is a necessary but evil drug because of the side effects. But is a excellent medication to help tamp down the inflammation.

I do have emergency medications in the house. Its taken a long time for my docs to give them to me, but I have had Crohns for over 30 years, so they now know I know what helps me to avoid the ER as much as possible. Hope that helps. And look forward to hearing more from you.

God Bless,
Gail *Nanners*
Posted 1/25/2008 4:34 PM (GMT 0)

Nanners covered that pretty well. However, I would add that the symptoms that drove you to the hospital sound like more than just a flare -- they are suspiciously like those that come with an obstruction. Did your diagnostic workup reveal any serious narrowing or obstructive areas?  It may be that the meds you are now on will alleviate some of the inflammation that may have caused this, but be aware that if the narrowing was due to scarring rather than inflammation, meds alone may not suffice.

Re the 50mg mercaptopurine, also be aware that it an take up to 90 days for that drug to reach full therapuetic effect, so be patient with it. It ahs worked very well for many Crohns patients in reducing disease activity and achieving remission, or at least dramatic alleviation of symptoms.

Posted 1/25/2008 5:08 PM (GMT 0)

Bspbtwins, good Morning and welcome to HealingWell and the CD Forum. I am so glad you found us.
You have received answers from Nanners that are right on and as Mike said your flare was pretty severe.  The high heart rate was problaby in response to the fever and the pain.   Over time you will get to know your body and your disease and how to know when you are having a flare and when you need to go to the ER.  I am glad you went to the ER as you were obviously very ill. 

Here is a good site for newly diagnosised Crohn's.  Read through it and hopefully you will find some answers to your questions.  Also remember each person's disease process follows it's own path.  Take care and I am so happy you found us.  Stay with us.
Kitt

http://www.ccfc.ca/English/info/diagnosed.html

Posted 1/25/2008 10:27 PM (GMT 0)
Welcome, I don't really know any answers but just wanted to say hi, and your not alone. I am also newly diagnosed crohn's person. The people here have been amazingly awesome and supportive.
Posted 1/26/2008 4:49 AM (GMT 0)
Yes, that is a really high dose of prednisone...when do you go down to a lower dose?
Posted 1/26/2008 2:27 PM (GMT 0)
My dose cuts in half tomorrow.  I am terrified of the side effects of Prednisone, but it is so high because they are balancing what they were giving me in the hospital by IV.  My doses taper over the next 2 weeks.  I go to my GI on Wed. 

I wish I could get over being exhausted.  But I guess after 5 days of nothing but laying in a bed, it is to be expected that I would be tired, when back at home.  We have 4 kids so their energy goes on even if mine doesn't.

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