May 9th, 2012

On May 9th, it will be 1 year since I heard those words that would change my life forever, while sitting in the ER with my Mom.

"Mrs. Schlaht, from the CT Scan results, you have what I believe is Crohn's Disease. You will need to see a GI to do further testing ASAP."

Those words hit me hard and put my life into a spin that had yet to slow down.

I have gone through many types of medicines: Pentasa, Prednisone, Potassium, Entocort, Humira, 6mp, and many anti-biotics.

I have learned to give myself injections.

I have had my first over night hospital stay, which last 3 nights/4 days.

I have been to the ER more times than I can count.

I have had blood work done 2-3 times a month.

I have had multiple testing done.

I have had complications due to the drugs: sinus surgery; 3 root canals and crowns; nausea; vomiting; bleeding; pain - physical and emotional.

I have had partial obstructions.

And most recent, it was confirmed that my stricture in my ileum is scar tissue. We had hoped for inflammation instead, but there was very little.

I have some more testing on the 20th of this month, and then my follow up appointment with my GI on the 30th. From there we will determine the next step. Re-sectioning surgery is VERY VERY VERY high on that list.

It's been a rough year for myself and for Ben, as well as the rest of my family.

I have become an admin on a great FB group. IBD Journeys http://www.facebook.com/groups/ibdjourneys/

I have made some amazing friends that share my same disease of IBD.

I have done the Take Steps for Crohn's and Colitis Walk.

I have learned a lot about myself and my strengths.

Please continue to pray as we pursue the next step in this process.

Thank you to everyone who has been an amazing support system for myself and others with IBD.

Crohn's disease and Gluten Free

I have decided that I really want to track my progress and disease on my blog. So that I can keep up with what is going on and look back on my progression, or series of events. But also so that if I can help anyone else through this battle of Crohn's disease and going Gluten Free, I can. Please feel free to share my blog address with anyone who you might think would be interested.

I am going to start with an email that I sent someone with Crohn's disease and Celiac disease today.

This is my personal experience thus far:


I have Crohn’s disease (was just diagnosed in May, but they believe I have had it for 15 years or more without treatment and/or diagnosis). I have an ilium stricture and have not been able to get in remission since being diagnosed. I am hopefully going to start Humira again soon, as I had to stop because I got several infections after the initial loading doses.

I was tested for Celiac disease, and it came back negative. However, my GI specialist feels that I should try to reduce gluten in my diet as much as possible. I am not 100% gluten fee.

This is just what I am doing right now, as recommended by my GI specialist.

Also, eating out and being GF is extremely hard. Unless they have a totally separate GF kitchen, there will be cross contamination.

I do not eat any raw vegetables.
I do not eat any seeds or nuts.
I do not eat any peelings on fruits or vegetables.
I do not eat anything leafy. (spinach, lettuce, etc)
I do not eat anything stringy (no stalks on broccoli or cauliflower. No celery. No string beans. No okra.)
I do not eat any type of beans or peas.
I only eat raw fruit that can be easily broken down (bananas, peeled peaches, peeled apples, peeled pears)
I have found that regular potatoes do not work for me. any recipe with regular potatoes, I substitute with sweet potatoes.
I can eat broccoli florets and cauliflower florets, but they must be cooked to death.
I can eat squash and zucchini, but they must be peeled and have no seeds.
I eat a lot of chicken and fish.
I have tried to cut out red meat as much as possible.
Pork makes me sick almost instantly.
NO POPCORN.

As far as GF, I have found several websites were you can buys GF ingredients for way cheaper than the stores. I buy a lot of mixes and flours and cookies, etc through these sites.

Each person is different on what they like as far as GF. Personally, I am not a fan of the rice pasta, but a lot of people seem to like it. To me, its too much like rice to be pasta. haha.

www.Allergyfreegirl.com
http://www.katzglutenfree.com/Default.asp
http://glutenfreehomemaker.com/
https://sugarandspicemarket.com/
http://betterbatter.org/
http://www.glutenfreesaver.com/



If you add me on Facebook, I have “liked” a ton of GF pages, and they often advertise sales, etc on FB and you can sign up for their email lists to get email updates, recipes as well. I try to always “share” the deals, good recipes, etc on FB.

I hope all this helps. Please feel free to comment and/or email me with any questions. We are all in this together and I would love a new Crohn’s/GF friend.

Humira side effects - week 1

I would like to use this blog as a diary of my side effects, etc.

After speaking with my GI's nurse today, I am experiencing some of the side effects associated with the Humira injections.

1. I have exhaustion at a level that I cannot even explain. If I sit too long without talking, working, occupying my brain....I could literally fall asleep wherever I am. It's like the exhaustion takes over and I can't even think straight. This is described as my immune system starting to lower and shut down, then my body goes into protection mode.

2. I am having very vivid, weird dreams when I am sleeping. The dreams will carry over from night to night and continue on. I have never had dreams like this before.

3. I am in a brain fog. I forget that I have done things, etc. Its like it completely is gone from my memory.


While these are VERY normal side effects, they keep me on my toes. I am having to learn to listen to my body more and relax (lay down, etc) when I feel like I need to. I am writing things down more so that when I don't remember, I can look back.

This is all very real and scary for me at times....and other times, I am realizing this is just a way of life for me now and that's what I need to adjust to. I am praying like no other and asking for God to guide me through this new journey of what my life is becoming.

Medical update/life update

Life has taken a definite spin for us this month.



Beginning the first weekend in May, I started having some pretty serious personal health issues. After seeing, my regular dr, a GI specialist, an ER visit, more GI specialist appointments, an ultrasound, and a colonoscopy later…..it is determined that I have Crohn’s disease. And a pretty serious case of it.



Right now, they have me taking 6 anti-inflammatory pills a day and 4 steroid pills a day to try to get everything under control and into remission.



I feel ok, but I am constantly tired and very worried/scared about the outcome of all of this and where this will take us on our journey that WE had planned. We should have known, this isn’t our journey, but it is His journey for us. I am putting all of my trust in our Lord and know that he has a plan for us.



If you guys (if anyone even still reads this blog) don’t mind, please just keep Ben and myself in your prayers. We would love to be covered in prayer during this time in our lives.



Does anyone have any experience with Crohn’s that could give me diet recommendations or any other advise. It would be greatly appreciated.

New Year Resolutions

I have been thinking about New Year resolutions for a few weeks now and trying to decide if/what I want to do.

Well this year, I have decided to just make some changes/adjustments/upgrades in my life.

~make my marriage and my husband come before all others in my life. He and our marriage is my number one priority.
~get back into Church. I have let myself fall out of touch with God lately, and that has to change.
~blog more often. I really slacked on blogging this year.
~party/drink less.
~be healthy enough to have a baby.
~save money.
~read more.
~do more craft projects as gifts and home decor

What are you doing for resolutions?