July 2011 update

It's been a while since posting an update.
So....the bottom line is....I am learning that diet absolutely makes a difference for me.
This past weekend, I even took a 3 day, cooking class at the Restaurant School on Walnut Hill in Philadelphia with Christina Pirello (you can check out her website at christinacooks.com)

I am currently alternating between 4 to 5mg of prednisone (I have been on low dose prednisone like this for a few months now while starting and maintaining a new diet of no junk food etc...)

I lower the dose 1mg at a time (i started lowering dose 1mg at a time once I was at 10mg).  I had originally started prednisone earlier this Spring while I was taking humira and  basically had side effects that made me lose the use of my left leg and left arm.  Thus, my mom quickly put me on 20mg of prednison to see if it would stabilize me and it did stabilize me.

From there, I reduced to 15mg, then to 10mg and once I got to 10mg...i reduced prednisone 1mg at a time, under the support and supervision of my family doctor and the experienced advice of Ginny Harper who has been managing her crohns for more than 30 years without drugs.

Now I am working to stay at 4mg.  I am working towards 0mg.  I lower the dose when I go about 2 to 3 weeks without ANY symptoms so it could take 2 more weeks, 2 more months or 2 more years until I get off prednisone and my body begins making its own steroids.  there is no magic recipe...my body is guiding me.

My daily diet is...
breakfast = soft, warm breakfast cereal (like oatmeal)...sometimes it is oatmeal, sometimes it is an "oatmeal like" type of porridge but made with brown rice, or millet or both etc..  I will often put some rice syrup on the breakfast cereal.  EAting a sugar free breakfast  has been one of the hardest changes I have had to make but once y ou get used to it and you get used to feeling better....it all starts to become "regular".

sometimes I have scrambled eggs (maybe once a week)...and my mom often mixes the eggs with scrambled tofu (she adds tumeric to make tofu yellowish like eggs).

sometimes I have mochi wafffles (you can buy mochi in more and more stores.  we cut them into little squares and put them on a waffle maker).. YUMMY !!  I have them about once a week.   Sometimes my mom makes some great millet pancakes (eden recipe is on-line and she mixes in arrowmills,  organic, sugar free , mulit-grain pancake mix instead of using 100% of the recommended flour in recipe).

So, most days , I have a porridge like warm cereal, which is suppose to be helpful because it doesn't spike my sugar and it's warm temperature is very healing for my digestive tract and not cold and shocking to myd igestitve tract.

Whether I have a porridge, mochi waffles or eggs etc....I also have some cooked veggies.

I know that sounds really weird but it's no different than an omelette with veggies and besides....most of the world's culture's eat some type of veggies in the morning.  The USA is a country that doesn't really eat the same way that the rest of the world eats.

Normally, the veggies are green veggies of various kinds and sometimes they are steamed, sauteed, or stir fried etc....or quick boiled.  Sometimes, I put a flax oil on top (instead of butter).  Flax oil cannot be heated so it is just poured on top.

I also take supplements at breafast: multi-vitamin, d3, b-12, iron, prednisone, L-theanine, Wob-enzymes

I had a doctors appointment in May and I had the BEST results since I was originally diagnosed.  My albumin was better, my calcium was better, I felt better, my abcess had formed scar tissue and I was feeling great.

But guess what the doctor said...he said he STILL wanted to put me on methotrexate and he STILL wanted me to do tube feeds and he STILL wanted me to get a G-tube put into my stomach.

Why?

Because he said once I go off my prednisone, my crohns will come back with a vengeance so he wants to prepare me for that terrible day that he says is in my future.

Needless to say, I didn't agree to what he said (and neither did my mom).  My mom asked him how they taper off prednisone and he said they just go 15mg to 10 mg to 5 mg and then to zero thus they never taper slowly like I am doing thus I think that is why my response to tapering off prednisone will not be the terrible experience that they predict because I am not tapering directly from 5mg to zero mg.

Well...this is a little update.

So far, I am learning that diet makes a difference and OH...bythe way......once I stopped taking all the big drugs like Humira...I never missed a day of school for being sick and I made the honor role !!

I am attaching a more recent picture of me so you can see how I am looking lately.  I forgot to add that in my case, I need to gain weight and take in alot of protein and that is not always easy to do because I don't eat animal protein.  So, I use a dairy free, sugar free protein drink that has 25mg of protein per scoop and I have 2 scoops per day.  I think this  has really, really helped me and was particularly responsible for helping improve my albumin levels and calcium levels.  It is by PEACEFUL PLANET and it is the sugar free french vanilla with spirulina powder.  I use a blender and it is not the greatest tasting shake but I add very small amounts of sugar free almond extract and vanilla extract.  It really helps me.

I hope this blog helps others and please write back because i like to hear what other people are experiencing so we can share and learn from each other.

Bye,
Harley