Sunday, September 30, 2012
Friday, July 27, 2012
Wednesday, June 6, 2012
The next thing that I've been dealing with is catheterizing. I had to go for an ultrasound of my bladder and kidneys. Thankfully my bladder was empty and of a normal size! My kidneys are normal. At my appointment my urologist and I were talking about how I slack off on cathing sometimes. That is something that I struggle with, I need to work on it. He explained to me that over time my muscles, due to this darn GP, will not cooperate anymore and eventually there will not be anymore shrinking of my bladder by cathing. I asked him where my kidneys played into this (because I'm a moron sometimes, it all gets twisted and confused in my brain). He said that if my bladder gets full, the excess fluid will back up into my kidneys and do damage. I have to cath to keep those bladder muscles in check as well as keep my bladder empty to protect my kidneys. Goodness knows I need another organ (kidneys - do you call it an organ or organs?) to become effected and damaged.
For those of you GP patients out there, you know when you're getting a flare up? For me it is like some of my everyday GP symptoms are turned up a notch or two. I can feel my body getting into the flare up mode. Since mid-November, I've been cleaning out every other day so flare up or not, if it's a food that set me off into a flare up, the magnesium citrate clean out usually resets me so I try and go on as best I can. My goal is to reach the clean out day and it will get better hopefully. It was the first Friday in May and I went to see my friends at my previous place of employment and just hang out with them while they had lunch. I didn't eat because I was on the end of a clean out and I just kind of felt off GI speaking. I just thought it was the clean out, nothing major. I ran a few errands around town and got some fries (fries were one of my safe foods... not anymore) before I headed down the mountain. I didn't make it out of town before I was having teeth gritting, abdominal pain. What in the world!? That was the first day of my flare up and this coming Friday will be the start of week five. It is absolutely ridiculous. The first two weeks I stayed on liquids for several days and then would try bland food which would go horribly wrong so I would go back on liquids. I finally decided to call my GI, maybe I was doing something wrong. He put me on the step one clear liquid diet. I got really weak and started to get one of those really bad migraines from not eating. I'm still having to clean out during this period and I take six Zofran a day for nausea and it's not touching the nausea. I finally broke down and ate some saltine crackers, I didn't care at that point. If I didn't get rid of the migraine, it was just going to make me more nauseous. I called my GI and told them that this is not working, the Zofran is worthless. They called me in a different type of nausea medication but it didn't help either. It's bad when liquids make you nauseous. I called again and of course my GI doctor is on vacation this week (I have perfect timing as always). Luckily his PA called me in a stronger milligram. I am going to go back on the step one clear liquids, no cheating this time. Migraine or no migraine this flare up has to go! Five weeks is long enough. Hopefully this stronger medication will help and get me over and out of this flare up.
Friday, April 13, 2012
I had to Flex Sigmoidoscopy the following week. The prep for a sigmoidoscopy are enemas but I have trouble using those due to my muscles. Luckily my GI let me do my usual clean out routine instead. I had heard from one of the nurses that I would be awake for the test and I was not thrilled about that. Who wants to be awake for a test similar to a colonoscopy? Not me. When they were checking me in they checked with my GI and he said he was going to put me under for the test. Thank goodness! They used Fentanyl and Versed. It was the normal routine of not being able to find a vein because of bad veins and dehydration. Whenever I got back into the procedure room I talked to my GI about the Sitz Marker test. We decided that since I was able to go on my own after being so full, I would try adding an extra day in between my clean outs to see if I could go more on my own and because I'm drinking so much magnesium citrate. We also added Miralax to the combination as a push to my system. When they were getting everything ready the nurse told my doctor that I was tachycardic with a pulse rate of 126bpm. He agreed and said that my pulse ran higher. I however didn't even realize that my pulse was running that high. The test went well. The remaining eight inches of colon looked good. It was not laying flat as suspected, the hook up site looked good and there was no bleeding. I would not need surgery to remove it!
With my clean outs, I generally dehydrate from not being able to drink enough, more goes out than I can get in. A week ago Thursday I woke up and my pulse was running around 125bpm. As the morning went my pulse kept creeping up. By ten o'clock my pulse was 135 and stayed there for several hours. I had a dermatology appointment in Winston so as we were leaving I called my GI to ask what I should do. Since my pulse has started running higher, my energy level has begin to drop off. I called my GI office because my chest had started hurting and I could not get my pulse to come down. They said to go on to the ER and get checked out, a pulse rate of 137bpm with chest pains needed to be looked at. The ER really didn't have much to offer me. They did an EKG, chest x-rays and some blood work to make sure my levels were okay due to so many clean outs. Everything came back fine. They said as long as there was no left arm pain, shortness of breath or my pulse did not exceed 170, I should be okay. I called my GI doctor on Monday due to the Easter holiday and talked to him about the increased pulse rate. I was concerned about damaging my heart. The increased pulse rate was just one of the effects of cleaning out so often and being dehydrated. If my pulse exceeded 150bpm that is when possible damage could occur. He scheduled a tilt table test for next Tuesday to make sure nothing else was going on. This morning my pulse was up to 146bpm after cleaning out last night.
Saturday was my brithday and we had scheduled a lunch with our close family before my dad had to leave for Los Angelos. It was a last minute lunch. Friday night I was cleaning out and had started feeling really achy and attributed it to the magnesium citrate. Unfortunately I was wrong and had cough a virus which set up bronchitis. I've been taking azithromycin so my GP has been edgy. The last time I took azithromycin, it flipped my flora so we will see what happens. My weight is not good. I weighed eighty-eight pounds this morning. I told Jacob yesterday that I look really rough. I try to take in calories but I just run out of room and time. My nausea has been flaring more than usual and the cleaning out every other day does not help either. The two day break in between did not work out. It was too physically demanding and painful. I wasn't gaining anything doing it. I feel good though. Whenever it goes into those periods of running high after a clean out it drains me but other than that I feel good. I have learned to live with my GP and I am very happy.
Thursday, March 15, 2012
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.