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.

Tuesday, March 6, 2012

long and overdue...

Growing up, we had this family joke that my bladder was the size of Texas. I would go to school or summer camp and not go to the bathroom all day. Who on earth could hold it all day long? Me. Well many years later, the tables have been reversed and I’m unable to go when I need to go. Funny how things work, isn’t it? Anyway, two years ago I thought I was just really bloated but after a week, an ER visit and a GI visit, I learned that it wasn’t my GI tract, it was my bladder. My bladder had grown and my muscles had become relaxed to the point that I wasn’t able to tell when I needed to go and I would just retain and retain and retain until I had an insane amount of urine in me and I looked really, really bloated. I had to shrink my bladder back down to normal size by self catheterizing and teaching my muscles how to relax so I could eventually go on my own again. It was a long process. I had to mentally remind myself to go to the bathroom or I’d go all day without going.

Anyway, I noticed a pattern starting in January. I was unable to go to the bathroom before ten each morning. My muscles would not relax. After three or four weeks I decided to give my urologist a call just in case something was up. My appointment was scheduled for 8:00am, perfect timing. I was asked to give a urine sample… ummm? I explain to the nurse that that was not going to happen because that is the reason why I was here, I can’t go. As soon as my urologist comes in, he asks about my surgery, recent medical history and of course clean outs; he informs me that I am retaining to the point that I will have to start catheterizing in the mornings.

I have been doing fairly well with my GP diet. I have tried to follow the rules and behave. My weight did drop down to ninety-two pounds but it has come back up a few pounds. I have always been a candy and junk food eater. Having my colon removed did stop almost all of my candy eating. I did get a hold of several bite sized Snickers with peanut butter last week (like four or five) and they were heavenly and so not GP friendly!! I cleaned out Thursday and Friday afternoon around 5:00pm I started having this pain on my left side between my abdominal and pelvic area. I just ignored it thinking it was just a freak thing and that it would go away. I ate dinner and since the pain was only intensifying I decided to soak in bathtub (like that helped…). By 9:30 I couldn’t deal with the pain anymore and decided to go to bed and hopefully sleep the pain off. I didn’t sleep well and at 12:45 the pain woke me up. I got up to walk to the bathroom and I could not stand up straight I was in so much pain. I decided to go back to bed because it was storming and I was so miserable, maybe the pain would be better in the morning. I woke up Saturday morning still in pain so I called the on call GI and asked him if it could be a possible blockage (those heavenly Snickers that weren’t feeling so heavenly now). He told me to come in to the ER to be checked out.

Normally one waits for a while in the waiting room at the ER. When Jacob and I got there, I registered and we were taken back immediately. By the time I came out of the bathroom, the doctor was in the room waiting on me. He examined me and brought in the head doctor of the ER. They both agreed that I was a complex case based on my medical history but the pain was GI related not pelvic. After several tests, Zofran for nausea and Dilaudid for pain, they sent me to holding where I would wait for my CT and receive an IV. Luckily my CT and labs came back clear, no blockages or obstructions. They suspected that it could have possibly been a really bad GP flare up that had caused the pain. I was just thankful that it wasn’t a blockage. No blockage, no NG tube.

I see my gastroenterologist next week. I am hoping to discuss my clean out routine. Today was magnesium citrate bottle number fifty-three. I would like to see how delayed my small intestines are. My throat has got to where it burns a lot and is just generally sore. I’m not sure if it is allergies or if it is the magnesium citrate. The magnesium citrate burns me up internally when I drink it.