Journey Through my Everyday Life: To Mayo Clinic & Beyond!

Hello everyone I have a lot to update so sit back, grab a beverage of your choice and make yourself comfortable.

A few weeks ago after coming home from Convention with my sorority I was put in the hospital because of a typical flare up of my 4 1/2-5 year flare up and I received an NG tube
to see if enteral feeding would help my Crohn's. Well a week from yesterday I went back into the hospital because my pain was not controlled and the nausea was unbearable. I had a two week check up from my hospital stay that I mentioned previously, at my local GI's office. I told him I couldn't handle it anymore and I needed to go back in the hospital so he readmitted me. Simple enough? Oh noo. Of course not. Nothing is ever simple with me! We met the on call doctor who let's just call Dr. Joe. Dr. Joe had a completely different view of handling my case then my local GI whom I see regularly, Dr. G. He refused to give me pain medicine and told me the reason I was in pain was because I ate popsicles on my NG tube diet even though the discharge papers at my last visit said I could have popsicles!!! We complained to any and every nurse, resident and doctor until finally they gave me pain medicine-1mg of morphine. At this point I was in a ball crying my eyes out and burping up my NG tube feeds. For those that are drug illiterate-I can give 1mg of morphine to my puppy and he'll still be running around acting normal. Needless to say it didn't work. Not only did it not work but I could only have it every 8 hours. My mom and my primary care physician were FURIOUS. This game went back and forth and they finally upped it to only 2mg. Keep in mind that the last week they gave me a real dose of morphine around the clock. I was just in so much pain I could barely handle it.They attempted to regulate my NG tube feelings over 20 hours a day and not even that worked. By that time I was crying and in tremendous pain. Then the doctors came in & wanted to do surgery!! I was so fed up we asked to be discharged and I yanked that freaking NG tube out of my nose & slung it in the trash can and mumbled a few not very nice words to the nurses and we LEFT. We discharged the day after I got admitted. The doctors said other mean stuff to us but I won't repeat it because it just makes me angry thinking about it. As soon as we left we called my compassionate knowledgeable primary GI in Birmingham to make an appointment. At least he knew my case! This Wednesday I had an appointment with my Rheumatologist and he explained to me the pros and cons of surgery in a rational understanding way but he agreed with our decision to go see Dr. King for a second opinion. So yesterday we left for Birmingham and arrived that night. We shopped around and tried to make the best of the trip. We woke up and drove to his office this morning. We saw him and found out that he didn't have hospital privileges still because he just moved into his new office so he couldn't admit us but he definitely pointed us in the right direction.

He said I'm just me; I'm not textbook Crohn's, I have a few disorders and diseases, and my immune system is basically overwhelmed. He is referring me to Mayo clinic and said he wouldn't be shocked if they DX me with more diseases or immunodeficiency. He thinks that's the best bet because they'll have a team of specialists for each of my diseases. The only thing he's worried about is that they'll just think(I'm paraphrasing Dr. King's words) " 'Oh well she's flaring in several places but it's not that bad. Let's try adding another med; Well yeah it's not THAT bad but it's still bad and you're on a dumpster truck load of meds and haven't been in remission in the last 5 years. Another medication isn't going to work!!" I have almost no MEDICINAL options left and he thinks surgery may be helpful it's just a matter of WHAT to take out. He said the fact that I've been flaring for 5 years & can't achieve remission even with taking over 15 different medications is a problem. He said the downside is it's impossible to take out all my inflamed parts so I still won't be in remission if they remove the ileum and/or colon. He said the biggest upside to surgery is that although I wouldn't be in complete remission it will finally give my mess time to work on a level playing field to get the other parts in remission. He said taking my intestines out wont matter as far as absorbing because I can't absorb anything anyways. :-)

So looks like Mayo Clinic is our best bet. I'm going to be praying like crazy that they can help me. God doesn't always give us understanding but he does give us this thing called faith. Sometimes faith fails but that's because you are attempting to have God's understanding when it's impossible to.

My friends from school visited me during my hospital stay last week! They brought me goodies and everything. They are so sweet.

My friend visited me on the 4th of July during the hospital stay!

I had a PICC line and everything during my first hospital stay! My veins are cruddy from long term prednisone use. I stayed about 10 days during the first hospital stay.