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.

And just like that……a decision is made.

After lots of thoughts, research, prayers, asking other’s opinions, etc…..I have decided to add the 6-MP (talked about in my previous post) to my list of drugs.

After talking with the GI’s office some more, I feel like I can add this in and give it a try. (anything to avoid surgery at this point).

If I don’t like it, or I feel it isn’t working, or my blood/lab work gets crazy…..I will discontinue it.

So please keep me/us in your prayers.

Crohn's/Health Update

I feel like all I post on this blog now is about my health, and to be honest, that is what my life revolves around right now. It’s fun times for sure (insert sarcasm here).

I have had a few setbacks lately.

I am awaiting appointments from a few GI doctors for a 2nd opinion on my condition as my current GI has requested this. Hopefully those will come soon.

On Friday, Feb 22, I started experiencing some extreme pain and ended up with vomiting and a fever.

I had an appointment with my current GI doctor yesterday, March 4th.

I am still have a lot of lower right abdominal pain (which is mainly where my Crohn’s is and where my stricture (narrowing) is located). I am on 2 different types of steroids (currently 15mg of Prednisone and 9mg of Entocort), 8 anti inflammatory pills (Pentasa, each pill is 500mg), potassium (20mEq), and multiple supplements (6 multi-vitamins, 4 GI vitamins) a day, plus my Humira injections every 2 weeks. This is not helping the pain.

My current GI believes that my stricture (narrowing) is getting smaller, which makes it difficult for anything to pass through, thus a blockage in my small intestine could occur at any time. If this were to happen, it would result in emergency surgery to remove the narrowed part of my small intestine. This is something we obviously would like to prevent for as long as possible. When a surgery takes place like this with Crohn’s…..normally the Crohn’s just comes back in a different place, thus requiring multiple surgeries.

My current GI also believes that although the Humira worked almost immediately the first time I took it; it is not working as well this time around. He asked me to research and think about and pray about adding another immuno suppressant to the Humira. This one is known as 6-MP or Mercaptopurine. (you can read more about it here: http://www.gihealth.com/html/education/drugs/purinethol.html )

While Humira already has black box warnings from the FDA on the side effects, 6-MP would increase my risk of getting lymphoma. I have accepted the risks with Humira and know that the benefits for now, outweigh the side effects or potential risks. Adding another immuno suppressant to this makes me more nervous.

So I need advice, prayers, thoughts.

Do you take 6-MP? Have you ever taken it with Humira? What side effects have you had? What are your thoughts on it?

Please, please keep myself and Ben in your prayers as we pray, research, and think about this next step.

My first time being admitted to the hospital 1/23/13

The week started off strange. We were off work that Monday due to MLK day.

Tuesday, I went to work as usual but felt like I had a stomach bug, so I went home ill around 10:30am. Wednesday rolls around and I still don't feel right but went to work anyway. Through out the day, I was extremely fatigued, felt very dehydrated, no energy, light headed, etc. I called my GI to see what to do next. The nurse suggested that I drink lots of Gatorade over the next 2 hours to try and get hydrated, then call her back.

So it began, I would drink Gatorade, immediately run to the bathroom and pee it out. Something wasn't right. So after 2 hours, I called the GI back and the nurse recommended that I go to the ER to get some IV hydration. No big deal. Not my first go round. Went home to pick up Ben, change clothes, get phone chargers, then off we went to the ER.

In the ER, they hooked an IV up with saline hydration and did some blood work. Within 10-15 minutes they were back saying I had to be admitted immediately and they started hanging more bags on my IV pole. These were potassium.

I was told that they had gotten my blood work back and my potassium was at 2.3 (normal range is 3.5 to 5.2).
They called my GI and he told them to admit me immediately and get IV potassium going.

I have to tell you. Potassium burns like hell. I thought my arm might catch on fire until they were able to get it properly diluted to a strength I could handle. Not fun!!!

When I got into a room, I was given potassium pills on top of the IV and in the middle of the night given powdered potassium drinks as well. I was hooked up to heart monitors and put in the "step down" ICU unit. This was extremely scary for me!

The next morning, more blood work and the potassium came back at 2.6
It really wasn't budging much considering the amount of potassium I was being given.

So I continued with the IV and powdered potassium drinks. Eventually that day (Thursday), my GI came in. We went over a few things and it was determined that I was in a full Crohn's flare! I had NO clue. I honestly thought I was in remission. I guess I was ignoring the pain as I had gotten so used to it over most of my life. EEK!

The hospital also did a C Diff test on me to make sure nothing else was going on. This test came back negative.

So they continued with potassium and upping my normal prescriptions that I take for Crohn's.

I was now taking 40mg Prednisone daily and 4000mg of Pentasa daily. Fun times! NOT!

by afternoon of the 24th (Thursday) my potassium was to 3.5
and that evening to 4.1
By Friday morning, my potassium had crashed to 3.1

Saturday morning, it was decided that I was able to be released and I was going home with potassium powdered drinks for 3x a day for a week; then to report to my GI asap on Monday.

So off I went.

I worked only mornings at work (Monday 1/28 - Thursday 1/31) due to Doctors appts and lab work that had to be done.

I reported to my GI on Monday. After receiving clearance from my ENT (due to having surgery in December), it was determined that I needed to go back on Humira (immuno suppresant) immediately. One shot every 2 weeks. Luckily, I had 2 shots still in my refrigerator from the last go round. And it was determined that I needed to come off the Prednisone as fast as medically possible as I was beginning to develop other side effects from it that if stuck around, may not be reversed.

So, I came home Monday, injected myself with Humira and we are moving forward from there. I am on 4000mg of Pentasa. I am still on Prednisone, but reducing the dosage rather quickly.
Prednisone schedule:
Jan 25-28, 40 mg
Jan 29 -Feb 1, 30 mg
Feb 2- Feb 5, 20mg
Feb 6 - Feb 9, 10mg
Feb 10 - Feb 13, 5mg
Feb 14 - Feb 17, 2.5 mg

Then stop it all together.

Since I am weaning off of it so quickly, I have had some issues with headaches....and lower right ab Crohn's pains. But I need it out of my system.

While doing lab work twice this week, I learned that my potassium is now just slightly on the high side. and that my blood sugar (glucose) is a bit high for me as well at 119.

This is something we are watching very closely and I will report to my GI again this week, on Thursday, February 7th.

This has been a very scary time for myself, Ben, and those close to us. I am not out of the woods yet. Potassium is a scary thing to have crash on you.

I wanted to get this all written down so I would have it to look back on in the future.

Please continue to keep us in your prayers as we try to get this terrible disease somewhat under control. Also, please pray that I have no bad reactions to the Humira injections that I am once again taking.

2012

Since we are coming upon the end of the year, I thought I would write about what 2012 has brought us.

2012 was our first year of marriage. The marriage aspect has been great. I couldn't have asked for a better man to be at my side; to love, respect, honor, and help me. While I knew something was wrong with my health in 2011, we had no clue what we were up against this year.

• This year has brought…..unexpected roommates for us (twice).
• This year has brought…..Crohn’s disease for me.
• This year has brought…..many ER trips, many CT scans, ultrasounds, colonoscopies, chest x-rays, blood work, medications etc
• Many bad side effects to medications, failed medications, experimental medications
• This year has brought…..3 sinus surgeries at one time for me
• This year has brought…..many lost friendships, many new friendships, many ups/downs.
• This year has brought….Ben and me closer together than I ever though imaginable. I simply cannot imagine my life without that man by my side.

While I wish to not be sick, I know that this chronic disease is not curable and I must make the best of it.

While I know there will always be ups and downs, I don’t want to ever relieve what myself and my family has been put through over the last year.

I want to put the past year behind us and move forward. I am excited to see what 2013 will bring us.

So here’s to an exciting new year!!!!!