Thursday, March 15, 2012

a rough week...

This week has been a rough week. I was suppose to leave in the morning flying to Indianapolis but my GP changed those plans. In order to go to my GI appointment yesterday and be able to travel on Friday, I had a crazy clean out schedule; my clean out days fell on Monday, Tuesday and Thursday. Whenever I clean out, I get little sleep. Monday night, I probably got three to four hours and woke up with a horrendous headache. I didn’t pull myself off of the couch until almost twelve Tuesday and so my second clean out got started late. Whenever I clean out, I stay on liquids. I have a smoothie around four or five o’clock and I stop all liquids by seven thirty so I’m not up all night. Tuesday evening I could not get enough to drink. I decided what the heck, I have to be pretty clean doing two clean outs back to back and had some Carnation in Silk around seven o’clock. My thirst was never satisfied. At ten thirty, I’m gulping Vitamin Water. I finally decided to go to bed around one exhausted. I woke up at three (I was impressed, I got two whole hours of sleep!) and I blew the lights in the bathroom. I was so weak that I couldn’t fix it myself. I made it back to my room and yelled for my mom to go fix the lights. At four something, I got back up feeling really weak and made it to the bathroom. I locked the door and realized how bad I was so I unlocked it and sat down. I realized I was going down. I started beating on the wall yelling for my mom. She came in and that’s about it. She said I passed out cold on the toilet of course, of all places. She had my dad come in bring her a wet washcloth as she’s keeping me stable. They couldn’t get me to come to. Finally I came to right before she was getting ready to call EMS. Can you imagine, EMS finding me on the darn toilet!?! I’ll never clean out back to back again.

I went to my GI appointment yesterday and the passing out couldn’t of had better timing. He said that my body has trouble balancing its fluid levels while I’m cleaning out every other day. I’m to try drinking a liter of Gatorade the day before cleaning out so my body has time to hydrate itself before the clean out. Hopefully this will help with my blacking out as well as passing out on clean out days.

We talked about my small intestines and eight inches of remaining colon. I asked him if my small intestines could be slowing down like my colon did since I’m having to clean out so much and I’m hardly able to go on my own any more. He said yes, it was possible for my small intestines to be slowing down. I start the Sitz Marker Test on Saturday. The Sitz Marker Test is a test where you swallow a capsule that dissolves and twenty-four tiny rings are released into your digestive tract. In an ideal world, you’ll pass the rings. However when I had this test performed last year, I did not pass any of the rings, they stayed in my colon. With this current test, we will know if my small intestines which are already delayed (the Smart Pill test showed us that) are slowing down more and causing me issues or if my eight inches of remaining colon would be the problem. Another test my GI is going to do is similar to a colonoscopy. He is going to go in and look at my colon, hook up site and check for irritation and bleeding since I drink so much magnesium citrate. If my colon seems to be the problem and not my small intestines, I will meet with my surgeon and need to have the remaining eight inches removed. I told my GI that I am totally against the idea of an ileostomy. I got a lot of comfort from my GI when he understood where I am coming from and told me that I would not need an ileostomy.

A couple more things we discussed were my weigh and throat. On my scales at home, I weigh ninety pounds. I weighed this when I came home from the hospital in September after my surgery. My GI doctor was not happy with my weight. Before my diagnosis, I weighed one hundred twenty-one pounds. Cleaning out every other day does not help my weight. I really struggle with drinking so much magnesium citrate. The taste, the burning sensation it leaves in my mouth and throat as well as stomach. It has got to where my throat stays sore the majority of the time, especially after drinking the magnesium citrate. He said the soreness comes from drinking the magnesium citrate.

This week has been a lot to take in. I am physically tired and weak. I am not sure what to think about small intestine / colon situation. It’s kind of like being between a rock and a hard place. I know regardless of what happens it will be fine. God has a plan and I just need to trust Him.


  1. Hi Jennifer,

    I haven't read your blog in awhile but I am also in the midst of a rough flare up so decided to revisit it. Anyway, just wanted to say hello and send some positive encouragement your way. Hang in there!


  2. Hey Nicole!

    I am so sorry you are having such a rough time with your GP. I know a lot of people who have been having trouble as well. I don't know what it is about this time of year. Every March I have trouble. Hang in there, it will get better!