What she said was exactly what I needed to hear today.

Every time it is time for an infusion, I get a "this f*cking sucks! why is this my life?" attitude. I hate going, I hate the side effects, I hate getting an IV in my chest, I hate the unknown of the disease, I hate the unknown of the drug. I hate everything about this disease and what comes with it.

Now, I know you are thinking, this is going to be a "woe is me" post. You're wrong. :)

Yes, I have crappy stuff that happens with atypical HUS. Yes, I have a non-curable, extremely rare disease. Yes, I was in multi organ failure 8 months ago. Yes, I will have to get treatment at max every 14 days to keep me alive, for the rest of my life. Yes, it sucks. 

I won't lie about those parts.

But what I would like to talk about today is the support groups, the people you meet (in person and via the internet). The people that help you see that you are not alone.

Now, I do have other diseases and I have friends with the same. I'm on support groups for those 2 as well. They are so very helpful and understanding. And I've made some amazing friendships through them.

However, this time, I am discussing the people I have met since being diagnosed with atypical hemolytic uremic syndrome. 

Like I said above, I am normally pretty irritated and down when infusion time comes around.

I get my infusions at an oncologist/hematologist's office. They have an infusion room in the back that has about 8-10 recliners where people are getting pumped full of IV drugs. Some people that have crazy, serious side effects. Some are people that are dying. Some are people that are very, very sad. There are the angry people. There are the VERY happy people.

The happy people are who I try to always sit near. Since getting treatment anywhere from every 7 to 14 days for the last 7 months, I have gotten to know a lot of the "regulars" there. Most of the people have cancer and are there for chemotherapy that will make them very ill.

I have seen people have bad reactions to the drugs, people vomit, etc. This type of place isn't for the light hearted. 

But today, I noticed something different. I started talking to another regular there. We have met many times and always have a few laughs together. She is completely bald. And has had cancer for THREE years. She's been through almost every type of chemo there is. 

She is positive. She makes jokes about her cancer, her treatment, her side effects, the fact that she is bald and she makes people laugh. She more than once has stood up and walked over to someone else (while she is hooked up to an IV and pushing an IV pole), just to give them a high five; rub their back when the nausea comes on; just to tell them they will be ok.

Today, after one of the above happened, she was talking another patient through treatment. was telling her just to breath. To picture happy thoughts. To pray, even if outloud. I've seen her pray over them.

Once she got back to her seat, I asked her, "how do you do this?" "how do you not bust out crying with these people?" "how do you stay strong when you are going through so much?"

Her answer was shocking to me, "you learn more in these type of settings than you will learn from most doctors. You learn that there are others to lean on when you need it. Those that get what you are going through. Those that you pick up while they are down, are the ones that will pick you up when you need it. You have to try to stay positive or these diseases will kill you VERY quickly. The power of prayer and the power of positiveness is the only thing that has gotten me through this for so long. So now I get my treatment and I support others."

I got teary eyed and just said "thank you". What she said was exactly what I needed to hear today. I simply could not do these treatments without my support group. 

Hope this helps others too. 

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.

10 Things you probably don't know about me and living with Crohn's disease

I thought I would make a list of things that most people don't know about me and my Crohn's disease.

1. I have a low grade fever about 5 out of 7 days of the week. Normally it starts in the late afternoon, early evening. My eyes will start burning and my energy is instantly gone.

2. I am achy most days as well. You know how your body aches when you are feverish? yeah, that's what I feel a lot.

3. I inject myself with Humira every other Sunday morning. For that whole day, I just mainly sleep as it is impossible to keep my eyes open.

4. I miss having a social life, but I don't miss those people that were just my party friends. Turns out, I don't hear from them at all now that I don't party.

5. I take 28 pills a day. That is 28 between my prescriptions and supplements.

6. My potassium sometimes gets so low that I get intense cramps in my legs and feet, that I have to try to walk off. most of the time this happens in the middle of the night and results in crying. Every time I go to the ER, my potassium is so low, they make me take a giant horse pill *barf*

7. I don't sleep at night, which means during the week, I get hardly any sleep. On average during the week, I sleep about 2-4 hours a night....and that is after taking sleep aids. I take many naps during the day on the weekend.

8. Due to my steroids (Prednisone), and the increasing/decreasing required to find a good dosage for me, I have gained 21 pounds in 2 months. NOT COOL!

9. I now know more about my body, more about side effects of meds, more about Crohn's than I really ever realized I could know.

10. At the age of 34, I feel most days like I have been hit by a truck, but I keep moving along. I have some really bad days and some really good days though.

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.

medical follow up appointment/Crohn's Disease

Today was the follow up for all of my lab work, colonoscopy, scans, etc over the last few weeks. To say that I am overwhelmed, would be the truth.

The polyp that was removed during the colonoscopy, came back pre-cancerous. They removed all of it during the colonoscopy, but with my family history of GI cancers, I will have to have a colonoscopy at least every 2 years if not sooner. Cancer is a scary freaking word and it hit me to the core when he said it. Thankfully, it was caught before it turned into anything major and we will be able to monitor it closely.

Next!!! The tests came back postive for autoimmune disorder (which means that my body is attacking itself), positive for Crohn's disease, and positive the ilium stricture.

What this means is that I will continue the 3000 mg of Pentasa a day, 20mg of Prednisone a day, and will be closely monitoring my diet to see what affects foods/drinks have on me.

If I have another flare up, the dr is saying that I will more than likely be put on Humira (which means giving myself injections in the stomach several times a week). He would like to do everything possible to avoid this, as there are MANY risks to Humira and such drugs.

This is life changing for me and something I am not taking lightly at all. I am scared. I am nervous. I am in shock.

I will be doing several more blood tests, skin lab work (for TB, etc), and a bowel xray with barium over the next few weeks. More than likely I will also be reporting to the GI specialist every 2 weeks for a while.

Below is a link that helps explain Crohn's disease for those that are aware (just as I wasn't until a few weeks ago):

http://www.ccfa.org/info/about/crohns

We would like to ask that everyone continue to prayer for us during these times.

Also, I would like to hear opinions, thoughts, prayers, recommendations from anyone that wants to offer about Crohn's disease, etc.