Formula...Days 1-4

I started drinking the formula 5 days ago on Monday. Needless to say it has been a rough adjustment. I am supposed to go through a can a day, but as of now I am barely 1/2 way through this first little can. For the first couple of days, everytime I would take a sip, I would get sharp pains through my esophagus and stomach and I was hardly able to get enough down. I will admit that I did have some crackers and some tortillas over the last couple of days to help get something in my stomach while my body adjusts to the formula.

Yesterday started out better. I was able to get more down and I think that I am getting used to the taste of nastiness. I have been adding a little bit of flavor to it with the Strawberry Nesquick powder since it is 100% artificial. However, last night I went to make another glass for dinner time and I got so dizzy and weak I couldn't stand. My head hurt and I kept feeling like I was going to pass out. I know it's from the lack of fluids and calories that my body has had the last 4 days. I was able to get some koolaid, gatorade, and another glass of formula in and started to feel a little better within a couple hours.

My stomach swelling is down although I still have a lot of stomach and chest pain. My goal today is to finish the rest of can #1 and start taking in more from there :)

2012

Here we are in 2012. My GI tried me on a strong does of steroids in January to see if that helped with the EoE at all. I honestly didn't notice any improvement and high doses of steroids made me feel so awful. My GI wanted me to participate in the formula study, but the catch is that I would have to pay for the 4 endoscopies. I am unable to afford that right now so I have spent the last couple of months talking with both my allergist and GI about what the next steps should be. I can't afford to be in the study but it has been decided that I need to go on the formula to see if I can see an improvement in my symptoms. I have been so sick the last 1 1/2 months. I have been so tired and have had no energy. Along with experiencing pain and swelling when I eat, my body hurts very badly and I can't seem to find any relief from that. I have recently gone through more blood work to check for anything else that could be causing these symptoms, but they only found that my iron was borderline high.

So, the plan is that I will remove all food from my diet and drink this elemental formula until I can get feeling better......starting tomorrow!

November 2011- New Diagnosis

Starting in September, I started getting some mild bladder infections. I would feel better while on the antibiotic, but the symptoms would come right back as soon as I would go off of it. I met with my GYN who ran some tests and gave me a diagnosis of Interstitial Cystitis (IC) which is a painful condition due to inflammation of the tissues in the bladder wall.

I was so sad to learn that this condition is also triggered by ......FOOD! Particularly food that is acidic such as Apples, Fruit Juices, Carbonation, Chili, Spicy food, Chocolate, Tomatoe, etc. I was told to remove all of these foods from my diet and then I began a series of 7 bladder washes to help eliminate the inflammation in my bladder. My GYN and my GI are also questioning whether or not I have eosinophils in my bladder which could be contributing to the inflammation. Either way...my bladder now reacts to food, so it is just one more complicated issue to deal with.

October 2011

After my scope in September, my GI wanted to try some new medications to help with the symptoms. She put me on Gastrocrom, but that didn't help and made me feel worse, so I didn't stay on it for too long. She also ordered an ultrasound and a HIDA scan to check my liver and gall bladder, but those tests came back normal as well. She then advised that she wanted me to try the formula but was putting together another study and I just needed to wait a couple of months so that she could get the study up and running. So fun....

Allergy Shots

I started Allergy Shots at the beginning of September 2011. I had switched insurance companies and found out that this option was covered :)

It was a big committment at first. I had to go to the allergist's office twice a week for 3-4 months and then I was able to drop down to once a week for about a month. It took awhile for me to build up to my maintenance dose because I had a lot of local reactions that were bigger than they liked to see.

At first I tried having all of the solution combined into one shot, but my reactions were too big so they had to divide them into two shots so that I could continue.

As of February, I only have to go in once a month for my shots. I can see a HUGE improvement with how I feel during this allergy season so at least the shots are helping with my environmental allergies!! Woot Woot!

July - September 2011

July - September 2011:

In mid-July I met back with my GI for a followup. I had mentioned to her that I wasn't feeling any better and I was starting to have a more difficult time swallowing foods and pills along with all the pain and swelling with eating. She said she wanted to do another endoscopy...which I agreed with. She also ran some blood tests to test for allergens and the foods that came back positive with this test were:

Apple
Barley
Bell Pepper/Paprika
Cabbage
Corn
Grape
Milk
Oat
Orange
Peanut
Rice
Rye
Tomato
Wheat

I went in for my endoscopy toward the end of July and my stomach and duodendum were normal. My esophagus also looked normal with the exception of a few white plaques. I got my pathology results back a week later and she found: Eosinophilic Esophagitis. I had NOT been mis-diagnosed. As crappy of a diagnosis as this is, it was a relief that I did have an answer. At this point she told me to remove wheat, dairy, soy, eggs, fish, shellfish, peanuts, treenuts, apple cabbage, corn and tomato from my diet and she would scope me again in 6 weeks.

After 6 weeks, I went in for my next endoscopy. With this scope, everything looked normal except I had some mild inflammation in my stomach so they took some biopsies to test for H-pylori, which came back negative. I received my pathology results a week later which still showed EoE. I was advised to meet with her to discuss other options....

December 2010 - June 2011

December 2010 - June 2011:

Since my endoscopies didn't show any signs of EoE, my new GI decided to run some tests to see if she could find any other explantion for my symptoms. I had a couple CT scans and lots of blood work. The CT scans didn't show any abnormalities but my bloodwork showed that I was deficient in a few vitamins and my C-1 Esterase Inhibitor and my C1Q Binding Assay were low which made my GI question whether or not I had something called Acquired Angioedema.

At this point she sent me to another allergist, Dr. Gleich, at the Universtity Hospital who specializes in rare allergic diseases. He ran the test again and concluded that I probably didn't have the Acquired Angioedema because my blood results didn't show all of the deficiencies needed to correctly diagnose the Acquired Angioedema. So at this point....they still aren't sure but my GI still thinks I possibly have it, partly because I have a lot of swelling in my GI tract after I eat, and the allergist thinks that I probably don't......

Dr. Gleich also decided to run some allergy tests on me. The foods that showed up with this allergy prick test were:

Barley
Coconut
Corn
Egg
Fish
Garlic
Hazelnut
Oat
Peanut
Pecan
Pistachio
Rice
Sesame Seed
Strawberry
Tomato
Walnut
Watermelon

The list just keeps getting longer and longer....

Dr. Gleich also wanted me to do a 3 day trial of the formula to see if it helped me feel any better. I have to say the formula was rough. I was so nauseous and it doesn't help that it doesn't taste very well. I cried so much during those three days hoping that I would NEVER have to do this again.....

August - November 2010:

August - November 2010:

In August, I met with my allergist again to discuss my food trials, etc. and what the next plan would be. He suggested changing my steroid from flovent to the budesonide slurry to see if that made it easier to eat. He also said if that didn't work then the next step would be to go on the elemental formula diet. I had heard about an EOS study at the University Hospital that was an elemental formula study and the formula and scopes would be free. I thought this would be perfect because my insurance didn't cover formula and scopes are expensive as well. As part of the study, they did some patch allergy testing to check for delayed reactions (which are commonly associated with Eosinophilic Disease).

The foods that I tested positive to on the patch test were:
Dairy
Peaches
Green Beans
Peanuts
Turkey
Lamb

About 2 weeks later, I went in for my endoscopy to participate in the study. When the results came back....everything was clear. There was no sign of damage to my esophagus (which I had with my first endoscopy), no inflammation in my stomach, and my EOS count was 0. I was surprised. Although the budesonide was helping my symptoms a little, I still didn't feel great. The GI who performed the endoscopies for the study asked me to go off the budesonide and she would scope me again in 3 weeks to see if there was any change in the results because the results had to show that I had active EoE in order for me to participate in the study.

In mid-November, I went back in for the next endoscopy. My esophagus was still clear, I had a little bit of gastritis in my stomach, and my EOS count was still 0. I was no longer able to participate in the study as I wasn't showing any internal signs of having Eosinophilic Esophagitis. The good thing about this experience is that the GI asked if she could take me on as a patient to see if she could find some answers for me. I am so grateful that she did, because she is fabulous. The frustrating part of this experience was that since my scopes were now clear, this led the GI and Allergist to second guess whether or not I had been correctly diagnosed with EoE. I was basically advised that I could go back to eating foods and not take the budesonide because I probably didn't have EoE......

MIA Update

Well, I have been MIA from this blog for about almost 2 years now. A lot has happened within that time, so I am going to do my best to do my best to catch up in my next few posts without making this too lengthy.