I have decided to add another more recent story to my website. I have met a lot of wonderful people on the internet with similar problems and I thought that others might benefit from this story as well. Also, if you haven’t read my first story please read it first because it explains a lot of the issues I continue to deal with in this new story.

In October of 2001 I noticed a slight pain in my side just under my ribs on my right side. At first I just tried to ignore it, assuming that it must be a dystonic muscle pulling at me. I also still fear having to deal with doctors and I did not really want to have to go to a doctor. I hoped it would resolve itself. By November the pain was becoming a problem and starting to interfere with my life.

I went to the student health center where the doctor thought that it was probably my gallbladder. They scheduled more tests and I continued going to class and teaching until the pain became to difficult to deal with. I stayed at home a few days hoping it would improve, but the pain intensified and began to make me nauseated. On a Saturday in early November, the pain took control and I curled up in a fetal position, vomiting and moaning from the pain. It had become excruciating. My husband took me to the ER and just as I feared another nightmare soon followed. I just prayed that this time I wouldn’t be left with a permanent disability. I was once again in THEIR hands…relinquishing my body to the medical profession.

In the ER I endured several tests and was eventually admitted to the hospital. My memories get sketchy because of the morphine, demerol and dystonia drugs which wiped me out and erased a lot of my memory. I went through several tests for the next 4 days and no gallstones could be found. Eventually a HIDA scan revealed gallbladder dyskinesia. My gallbladder was not contracting properly. The pain was intolerable and caused me to have dystonic attacks which twisted and contorted my legs and arms. Dystonia often worsens with pain or other stressful situations. However, the dystonia pain was no problem compared to the stabbing pain in my side. It felt like someone was stabbing me repeatedly. I was eventually put on a morphine pump which took my mind away from reality. I was no longer coherent or able to make good decisions about my care. I feared what might happen to me in this state and I became a “difficult patient”. They eventually removed my gallbladder via laprascopic surgery. Thank God. The surgery helped a lot and relieved the severe pain.

During my hospital stay I feared that my tardive dyskinesia/dystonia would get worse if the doctors gave me the wrong medicines. I took a list of drugs known to cause or worsen TD/dystonia and refused to take any of the medications on the list. Thankfully, the doctors and hospital were very careful to adhere to this and I was able to avoid any of the severe drug reactions that have occurred in my past. I spent a total of 8 days in the hospital that first week. I was so relieved to have better medical care than what I had endured in the past. However, I did notice that the nurses were overworked and had difficulty caring for all their patients. They did not have time to bathe me or spend time helping me understand my situation. Even in the midst of a neglected health care system, I had some wonderful nurses. I could tell that they were dealing with the significant problems with the system, but they cared enough for their patients that they were willing to work in the mess. It saddened me that the problems with our system were affecting their ability to care for patients.

I went home and tried to recover from the surgery. I was told that I could eat anything and did not need to worry about my diet. This turned out to be a big mistake on the part of my doctor. I started developing a severe pain in the same area as my gallbladder pain and another pain in my lower abdomen. The pain slowly got worse over the next week and after Thanksgiving I was dealing with horrible pain. I was spending a few days with my parents and I once again tried to work through the pain. I went to bed, but sleep was impossible. The pain intensified as the night went on and by morning I was writhing and screaming with unbearable stabbing pain. I did not want to go anywhere near another hospital but I had no choice.

My parents drove me back to the hospital and I spent a whole day in the ER. The pain was worse this time than when I was first admitted for the gallbladder pain. I was put back on a morphine pump and ended up in the hospital for another 8 days. The pain was unrelenting and consumed my body and mind. The doctors could not find anything wrong and decided it must be post-surgical pain. They even thought it could be muscle spasms and gave me steroid injections which did nothing for the pain. I knew that it wasn’t muscle pain. I have had muscle pain from dystonia all over my body for 6 years now and this new pain was something so far beyond what I have ever experienced that it is difficult to describe. The steroid injections were a big mistake. I still have significant tissue damage in my chest from all those injections. Eventually I was discharged and tried to go home and recover for the second time.

This time I slowly weaned off the morphine and began eating again. The pain never went away, but was much more tolerable if I ate soft, bland food. I was eventually able to get off all the pain medications. I went to my follow-up appointments with the doctor, but I began to get the medical bills that insurance wouldn’t cover. I stopped going to the doctor out of fear of more bills and prayed the pain would resolve. I had missed all my final exams and needed to type papers and study. This was not possible with the pain. I hoped that it would be gone by the time the Spring semester started. I wanted so badly to get back to my life and work on my thesis.

In January 2002 I decided that I needed to get the pain resolved before classes started. My doctor referred me to a gastroenterologist. He examined me and decided that I must have Irritable Bowel Syndrome (IBS). I thought this was bogus, but I decided to go ahead and try what he suggested. He put me on a drug called Levsin which seemed to help relieve some of the pain in my side. He also told me to eat plenty of fiber. I was worried about eating the fiber, but decided he must know what is best.

Within 2 days of starting the Levsin and Metamucil I was in excruciating pain again. This time the pain was all in my lower abdomen and seemed to be coming from my bowels. Incessant vomiting started to come with the pain and eventually I was dehydrated and screaming from the pain. Greg once again had to carry me out to the car and drive me to the ER. The nightmare continued.

In the ER I was started on more pain medications and went through more tests. I was admitted to the hospital for the third time in 3 months. This time the drugs really wiped out my memory even worse than before. I was on a morphine pump again and I also took several drugs for my dystonia and my bowels. My dystonic attacks were quite severe at times. At one point the dystonia caused a jump in my heart rate and affected my oxygen levels because I couldn’t breathe right due to the spasms. The nurses freaked out and a crash cart was brought into my room. The dystonia always gets worse with pain and they continued to give me tons of medications to try to counteract the spasms. My condition deteriorated. I could not eat, urinate or poop because of the drugs and the pain. I vomited constantly and there was only one medication I could take to stop the vomiting because most of the others cause or worsen TD/dystonia. My tests apparently did not show any problems with my bowels and the diagnosis of IBS remained. My doctors began to worry about my deteriorating condition and loss of weight since I had not been able to eat. I was very ill and my family was also very concerned about my condition. After 2 ½ weeks they decided I needed to go somewhere else to get another evaluation of my condition. I was referred to Mayo. The nightmare continued.

The hospital wanted me to be taken by ambulance, but my insurance would not cover this. Greg and my father in-law decided to drive me up to Mayo. It was a long drive and I don’t even remember it. The drugs were still surging through my veins and affecting my brain. At Mayo I was admitted through the ER to the neurology ward of the hospital.

At Mayo they told me that the narcotics and anticholinergic drugs (for dystonia & my bowels) could be causing a lot of my problems. They took me off all of these types of drugs. The pain worsened as I came off the medications, but my body slowly started to recover. I was very ill and still could not eat because of the vomiting and pain. They decided that my nutritional status and loss of weight were a concern. I was started on Total Parenteral Nutrition (TPN). TPN is food through your veins. They decided to put the TPN through my IV (usually it goes through a PICC line). This was really hard on my veins, but since I was only on TPN for 3 days it worked out Ok. The TPN blew my IV every 24 hours or less so I turned into a pincushion. My arms were black and blue from all the IV pokes.

On another day at Mayo I had to deal with a bout of anaphylactic shock because of my allergies. The hospital decided to paint the room across the hall from my room. I was allergic to the paint fumes. My lungs seized up and I started coughing and breaking out in hives. I was sent downstairs for a liver biopsy (to test for Wilson’s Disease…a disease which can cause dystonia and gastrointestinal problems). By the time I got down there for my biopsy, I was going into anaphylactic shock. They started a new IV and gave me benadryl. I recovered from the incident but I was pretty mad that they would expose patients to those paint fumes. It could have killed me.

I went through a lot more testing at Mayo and the doctors discovered that I had gastroparesis (GP). This was most likely caused by the medications, but no one could be sure. I also had not had a bowel movement for nearly 2 ½ weeks and I was really getting concerned about my bowels. Eventually one of my nurses recognized this and remedied the situation with an enema. It turns out that I had an impacted bowel. The relief of pain was astounding and I slept 6 full hours that night. This was the first night in several weeks that I was able to sleep more than 2-3 hours. The stabbing pain was nearly gone. I still had some pain in that area, but the worst of it was gone. I am lucky this was dtermined when it was, an impacted bowel can break the intestinal wall causing severe infection and death if it isn't fixed.

The doctors told me that the medications had basically shut down my entire digestive tract. However, they still weren’t sure about whether I might have underlying gastrointestinal (GI) problems making this worse (IBS and GP). I think that the majority of my problems were from the morphine and other drugs that I first began taking back in November for the gallbladder pain. I have since learned a lot about Opioid Bowel Dysfunction, GP and post-cholecystectomy syndrome. I also sometimes wonder if dystonia might be causing smooth muscle spasms in my digestive tract. There is no research on this in dystonia, but I have met a lot of patients online who have GI troubles with their dystonia. The doctors deny this when I bring it up since there is no research on it. It happens in other similar movement disorders (like Parkinson’s Disease) so someone needs to do more research. I still can’t believe that the doctors couldn’t figure out that my bowels were impacted. When I asked why it hadn't shown up on x-rays, they said they thought it was gas!?

I was at Mayo for 10 days. The nurses were wonderful. The greatest thing about this living hell was great nurses! They made it bearable. My nurses at Mayo were working under much better conditions than those at the other hospital. They had time to bathe me everyday and were able to get to know me as a person. We owe a lot to nurses. They do great things and certainly don’t get enough respect for it. I think I might still be in pain if it wasn’t for a nurse.

As I have said before, there are a lot of problems with our current medical system in this country. Many nurses and others are concerned about this and working to make changes and improve quality of patient care. Patient advocacy is essential to survive in our current system and I applaud all who are working for quality of care and effective advocacy. To read more about advocacy and working toward quality of care check out my links.

I was eventually discharged to go home. I had lost 22 pounds since the beginning of November when this nightmare started. I also suffered fairly severe atrophy in my legs since I wasn’t walking at all during this time. The pain problems are virtually gone now, but I still have to be very careful what I eat to avoid pain. I am recovering slowly, getting back to my life and working on my thesis. Greg and Kramer both missed me very much and we are all very happy that I am back at home.

To learn more about gallbladder problems, gastroparesis, and irritable bowel syndrome check out my links.

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