Sunday, December 2, 2012

asking for help...

Since my colectomy in September 2011, I have drank 188 bottles of magnesium citrate. The bad thing is is that my clean outs are no longer working like they are suppose to. After trying several different approaches, the only thing that seems to be working is significantly increasing my clean out routine; 1 bottle of magnesium citrate, 8 dulcolax tablets and 8 tablespoons of milk of magnesia.
In November I went for my hydrogen breath test. I had to go ten days without cleaning out. On the third day, I honestly did not think I would make it through the test without cleaning out. However I toughed it out and made it. One of the nurses administering the test said she had never met a GP/motility patient who had to clean out like myself. The test results came back revealing that I did have bacteria in my small intestines.
I went to see my neurologist in early November. I have been suffering from complicated migraines since my late teens. Before being diagnosed, they were believed to be seizures but turned out to be complicated migraines. I will feel the migraine coming on and I will experience a numbing sensation on one side of my face. It will last for a couple of minutes. Now they are controlled by medication and rarely happen. I do however get general headaches. I started getting them when I started cleaning out. It has got to where I take a prescription migraine medication and a lot of ibuprofen but my headaches will still not go away. After talking to my neurologist several times about nutrition, dehydration and my clean outs, he referred me to another neurologist to handle my general headaches. I really liked her. She talked to me about how my gastroparesis could be causing my migraines. It made a lot of sense. She explained that my brain was very easily irritated. If I consumed certain liquids or foods that had certain chemicals, it would irritate my brain and cause me to have more headaches. Ibuprofen was another irritant. Too much ibuprofen can make you have a headache instead of getting rid of one. 
Over the past month or so, I have been struggling with my energy and weight levels. Because I am stubborn, I think that I can handle things and get them back into control. There have been several times while showering that I didn't think I would be able to finish my shower because I was so weak. I am up a lot during the night so it has been a struggle at times to get back to my bed without passing out. My pulse has been ridiculous. Lately my chest has got to where it physically hurts. My legs and arms feel like jello. My weight has dropped to eighty-two pounds. With that being said, I am calling my doctor. I feel weak and horrible not to mention my physical appearance.

Sunday, September 30, 2012

a busy month...

Whenever I clean out I get so thirsty especially during the night. I have learned that if I stop drinking any liquids after 6:00pm, I will be able to get a better night's rest which means fewer bathroom trips. I learned the hard way that if I get up during the night I am more prone to black or pass out. If I drink fewer liquids after 6:00, hopefully this will prevent this from happening. The downside to all of this is that it leaves me feeling extremely thirsty.
The past month or so has been pretty eventful. One morning I struggled with my pulse. I woke up and it was 164bpm. As the day continued, the lowest I could get my pulse to was 145bpm. When it runs that high, it wears me out. Another morning, I woke up really early after cleaning out the night before and went to use the bathroom. I locked the door of course. At 5:30 in the morning, honestly who is going to walk in the bathroom on you? No one, but I am the type person who locks the door at all hours of the night. I have to stop this habit. Anyway, I sat down on the toilet and felt that feeling come over me. I got up and unlocked the door. Luckily my mom was up and heard me moving around. She happened to open the bathroom door just as I was passing out on the toilet. My brother and I had the conversation later. Of all the places in the world, I pass out on the toilet, half naked. I personally think I need a different place to pass out at. I need a place that provides me with more dignity.
I went to the hospital earlier this month for testing. I was suppose to have a gastric emptying scan, a hydrogen breath test, an electrogastrogram and an endoscopy. I had to go five days without any medications or cleaning out before the gastric emptying scan could begin, my first test. There aren't a lot of kind or appropriate words that I can use to describe those days without my medications and clean outs. I would wake up each morning and as soon as I would sit up, it was like a concrete wall of nausea hit me. I continually had chills as if I was running a fever. It was not an experience I would want to go through often but it was worth it to get the test results. That Monday afternoon the day before my testing started, I was sitting at our kitchen table reading over my papers and filling out my medication list. I had read over the papers numerous times but when I read over the hydrogen breath test papers, I had missed something very important. I was suppose to be ten days without a colonoscopy prep/clean out. When it was time for my test on Wednesday, I would only be seven days without a prep/clean out. I automatically went into a panic and called my doctor's office. My doctor's office called me back and said that I had to go ten days without a prep. I told them that I had had this test twice before and had never had to go ten days without a prep. I wasn't even sure if that was physically possible for me to do. I was already feeling like I was pushing the limits and I was just at day five without cleaning out. She told me that most people have to go fourteen days without a colonoscopy prep/clean out for this test. In my case, they were letting me go ten days. The previous tests that I had had in the past were false positives because of my clean outs. I had to do this test, I needed it. As soon as I got of the phone, I lost it. I called Jacob in a melt down crying. I had totally messed up. How could I have missed that on those papers?! I now have to redo the test and go ten days without a prep. I have learned a very, very important lesson. Read, read and reread your test prep instructions. I am over being upset about the change in dates. The soonest available date for testing was November 26th so I will be skipping on any Thanksgiving festivities and foods. It will be a liquid holiday for me which is fine. I have to make it ten days regardless.
I went on Thursday and had my final two tests done, an electrogastrogram and an endoscopy. The first test was where I drank 800cc of water and then they just monitored my stomach for thirty minutes. I was huge after drinking that much water! After that they took me over to have an endoscopy. Since I have now had six endoscopies, sedation isn't as easy as it use to be. Previously they would give me Fentanyl and Versed. At one of my endoscopies, my doctor expected me to be out and I said no, I am still here. This time they gave me Benadryl, Fentanyl and Versed. My doctor had stepped out of the procedure room and I was talking with one of the women who works with the GI department. The nurse said she was going to start the sedation. She explains that she was giving me Benadryl. I do not take Benadryl because it makes me feel funny and knocks me for a loop. The two medications hit me and I realized that I was going to pass out mid sentence in a few minutes. I watched her administer the final medication and sure enough, I was gone mid sentence.
I woke up and I talked to my GI. When he came in, he just had this look that he has never had before. All of my other endoscopies have been fine. This time I had a hernia in my esophagus, a bezoar in my stomach, irritation around my duodenum and my pylorus was too small. A bezoar is a mass of indigestible food. He said that he was unable to get the bezoar with the scope and as for the irritation around my duodenum which is the first part of the small intestines, he prescribed Carafate. My pylorus, the opening from the stomach to small intestines was too small. It would need to be stretched and have additional Botox injections.
I see my GI doctor in December so we will discuss future treatment plans then. Right now I am focused on getting through the hydrogen breath test in November. Ten days without any cleaning out is a lot for me to deal with. Everything else can wait until later. After my testing was finished and I was back on my medications, I got on the scales and weighed myself. I weighed eighty-six pounds. That is the lowest I have ever weighed with my GP. When I came home this time last year from the hospital after surgery, I weighed ninety pounds.
I went with Jacob and his family last weekend on vacation. As always, whenever I go more than one day without cleaning out, I will do a back to back clean out and live mostly on liquids. I cleaned out Wednesday and Thursday and left with Jacob's family on Friday. Friday evening I started to get a bad headache which usually happens when I do a back to back clean out then stayed on liquids. My body just can not keep up on that third day. I took Advil, wore my glasses and carried on as usual. I woke up Saturday morning around seven and was greeted with the concrete wall of nausea. I tried to get up and go to the bathroom but I physically could not make it to the bathroom from feeling so physically sick and weak so I just laid back down. A little bit later I got up and tried to make it to the bathroom. This time I made it a bit further and felt as if I was going to pass out so I got back in bed. I fell asleep for a bit and woke up around eight and tried once more still feeling nauseous and weak. I knew that there was no way that I would be able to be ready to leave the house in an hour. I could not make it to the bathroom. How would I be able to shower without passing out? After sleeping in and resting, I finally felt decent enough to take a shower later in the morning and was able to eat a baked potato around noon. I knew that if I didn't get something on my stomach, my headache would come back and I would experience everything all over again. My energy was pretty much shot for the majority of the day. It took me until around dinner to feel like myself. I haven't felt like that in a really long time. It isn't something I want to get accustomed to feeling like. It was however a really good trip in which I enjoyed.

Friday, July 27, 2012

loving life...

I have been loving this summer! Yes my day to day schedule is ridiculous; start cleaning out on Monday and finish Tuesday by midday or afternoon and starting the whole process over again on Wednesday. It is a long and drawn out process so there is little time to do anything summer related but I just love summer. I went with Jacob and his family on vacation for a few days which was nice. It took some prep work, two back to back clean outs and an all liquid diet except for the last day minus a Luna Bar and a few of Jacob’s fries but it was well worth the effort. 

I switched primary care doctors back in June. She has a wonderful bedside manner. She is willing to help me on those rough days after cleaning out when I need an I.V. but am not able to make it all the way to Winston. The only issue would not being able to get I.V. access to my difficult and stubborn veins. We’ll just have to wait and see what happens when the time comes. When I went in for my physical, it was the day after cleaning out so I went in tired. She wasn’t happy with my weight or my low energy levels. 

I went to see my GI this a week ago Wednesday. For the past couple of weeks, my stomach has been indecisive, is it in a flare up or not? I woke up the day of my appointment and automatically my stomach started acting up. Perfect timing. 

My GI and I discussed my recent flare ups and how they are becoming more frequent, intense and longer. He had prescribed a new medication for me to take during a previous flare up to help with the nausea since my Zofran wasn’t cutting it. He said at the first sign of a flare up or anything different to take this new medication in hopes of preventing a new flare up. As for this flare up or whatever it is that I am in, I am to take the medication for a month straight. Along with my flare ups and cleaning out, I experience lower left intestinal pain. It will get to the point that I cannot stand up straight to walk. I however am so stubborn that I will just lay there in the bed and tough it out refusing to go to the ER. What can they do for me? When I am in that type of pain, I don’t feel like riding to Winston where my doctors are and I don’t feel like explaining my whole medical history to the ER here in town. He said that the pain is a combination of things. The area is located near the hook up site of my colectomy and during a clean out, stuff is continually flowing through there causing tenderness. 

Another thing we talked about was my diet. As mentioned before, when I go with Jacob and his family for several days, I go on a liquid diet and my GI tract seems functions better and I feel better (GI tract wise). I asked about the possibility of switching the majority of my diet over to liquids in an attempt to make my GI tract function better and feel better. He said that he had patients who lived on liquid diets. I would still eat solid foods occasionally because I crave crunch, flavor and just food in general. He wants to do some testing to see how my stomach is working. Since I have been having more trouble than usual and it has been two and a half years since testing, it was a good time to retest. I am having a gastric emptying test (a test that sees how long it takes the food to leave my stomach), an EGG which is an electrogastrogram (a test that measures the stomach’s muscles contractions), an EGD (a scope that looks at the esophagus and stomach) and a breath test to check for any intestinal bacteria. We talked about my weight and how I went from 88 pounds to 94 pounds. My goal is to reach 98 pounds. 

The final thing we discussed was how my surgery was not successful. The only thing it had relieved was the colon spasms.  Since the surgery, I have drunk 116 bottles of magnesium citrate. I asked if my small intestines could tolerate the every other day clean out treatments without doing any damage. Yes, the small intestines are very rugged. They may slow down with time because of the gastroparesis, as they are already slow but they can tolerate the treatments I put them through (1 bottle of magnesium citrate, 4TBSP of milk of magnesia and 5 tablets of dulcolax each treatment).

I am a very happy person. Yes, I have to compromise and change things around a bit but I am happy. I am very relieved to know that my small intestines can tolerate what I do to them every other day. I have always know that God would not give me more than I could handle but there is an extra bit of peace knowing that I’m not going to lose an organ because of what I am drinking (if that makes any sense).

Wednesday, June 6, 2012

long and overdue...

This is absolutely pathetic. I have no blogged in almost two months. Where does the time go?  To recap what has happened in the past two months let me start with the tilt table test. I had been having an elevated pulse rate and my GI sent me for a tilt table test. Of course on the day of the test, I am not able to eat or drink anything six hours prior to the test and I had cleaned out the day before so I went in dehydrated. The guy running the test sees that I have migraines and says that there may be an issue with giving me one of the medications because it makes your heart beat faster. It is known to give people headaches and they don't administer that medication to people who are prone to headaches/migraines. I tell they guy that I do not care if I get a headache/migraine. This is my second tilt table test, I want results. After getting me hooked up to the monitors, he looks over at the screen and says that I wouldn't be needing that medication because my pulse was already in the nineties. A nurse came over to start an I.V. in case something happened and they needed easy access. The guy running the test was ready to call the cardiologist to cancel the test right before they found a vein. After three nurses and nine sticks, they found a vein.  I was asking if we could do the test without an I.V. They said no; I had passed out before, what if it happened again. They needed to be able to get to me via I.V. Luckily one of my veins finally cooperated and they started the test. My pulse got up to 142 during the test but the cardiologist overall said that everything was fine. I don't know that my pulse is running high until it is above 120bpm, sometimes it will be 146bpm for several hours. It is odd but it is all in what you get use too. It does wear you down physically.

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

a busy few weeks...

The past several weeks have been busy. I saw my GI in March and he scheduled a Sitz Marker test as well as a Flex Sigmoidoscopy to see how my small intestines and remaining eight inches of colon were functioning. The Sitz Marker test was the first test of the two. It was hard. I had a lot of pressure pain. I started the test on Saturday after cleaning out on Friday. With the test being a five day test without any laxative medications, I knew food wise I didn't have a lot of room. I never realized how much room my colon provided me. By Monday, I was so full and miserable it was debatable as to if I would make it and how. Over the five days, I ate two orders of french fries, two cups of greek yogurt, a handful of chips and a few cookies. I was so miserable Monday I was to the point of not caring and decided to give the bathroom a try on my own. I learned that if I get to the point of being so full and miserable my muscles will work for me. (The question is is it really worth it?) I got my results back and I passed all of the Sitz Markers! In almost four years, I have never had a GI test come back with results like that. I was nice to hear I admit even though it would most likely mean that I would continue cleaning out.
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

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.