Hospital-Week Long Stay

Subsequent to the Emergency Room visit that occurred approximately two and a half weeks ago, I was admitted to the hospital on December 19th. I have been taking a medication called Imuran to treat my Behcet's in attempt to put me into remission. For the past two months I have taken 50mg daily. The medication can cause some serious side effects, and so I was reluctant to take it. However, I have already taken those meds that pose little damage and none of them were effective. Each drug I try now will likely cause increased side effects and has the potential to cause some serious medical issues.

On the morning of December 19th, I walked into the kitchen for breakfast around 6:30. I had a little pain in the middle of my abdomen, directly below my ribcage. It was not that bad at all, just felt as if I had pulled a stomach muscle or something. I was only able to eat a little bit of my breakfast as the pain began to worsen. Within two hours, the pain had escalated from mild to extremely severe. My stomach felt quite bloated and it was uncomfortable to breathe, sit, lay down, and walk. Any position was painful. I had to lie on my back, and although the pain was still severe, it was the only position that did not cause the pain to become more intense.

I called my mother at work. She encouraged me to contact my doctor on his cell phone. He instructed me to try a liquid antacid and to wait a couple of hours. If the pain did not subside, I was to go to the ER. My mother immediately left work, went to the drug store, and came home. I took the antacid right away, wishing that this simple over the counter medication would treat the pain. While my mother was in transit, I called my youngest sister to have someone to talk to. I was terrified because I thought I may have appendicitis, problems with my gall bladder, or something else. My imagination was running rampid with all these ideas as to what the cause of the horriffic pain could be. She tried to distract me, make me laugh, etc. Yet nothing could take my mind off the pain I was experiencing. This was without a doubt the worst pain I had ever experienced in my entire life. And I have a pretty high tolerance for pain, considering I deal with it on a daily basis. Anyway, I digress.....My sister and mother thought I may have gas, so I walked around, ate a cracker, drank sprite....nothing eased the pain. In fact, it got worse despite the fact that I had no idea it could possibly get any worse. I begged my mother to take me to the hospital. I wanted to call 911. We called my doctor back and he agreed I should go. My mother drove me and every little bump in the road sent me into screaming fits.

Upon arriving at the ER, we discovered that numerous patients were awaiting treatment. Some of them were suffering from symptoms of a stroke, so they were taken in first. I sat in a wheelchair silently begging for them to take me back. I was screaming in pain. Others who were waiting stared at me, and I did not care. The pain was constant and I was going insane. It had been this way for about 5 hours at this point. Finally, I was taken back and put into a bed. The ER was so busy that I was taken into a room with four beds and only curtains separating the beds. This was a kind of waiting room but they were able to start an IV and start assessing me. Shortly after I was taken to a real room. I was not allowed food or drink because they needed to determine what was going on. My mouth was so dry because of the ulcers. That was the least of my concerns, although it was annoying. The doctor did not give pain meds right away because he wanted to see me first. He did an examination and ordered a CT with contrast to assist in diagnosing the problem. The nurse administered pain medications, however they did not even take the edge off.

The CT results revealed acute pancreatitis. Pancreatitis can occur for a variety of reasons, including alcohol consumption, high cholesterol, trauma to the abdomen, gall stones, or medications. I don't drink, had no trauma to my abdomen, do not think that I have high cholesterol, and the CT did not reveal gall stones. Therefore, it was assumed that one of my medications was the culprit. However, Behcet's Disease causes inflammation in my body, and pancreatitis is essentially inflammation of the pancreas. So I believed that it was due to the Behcet's.

Without delay I was admitted. They said I would probably be there for a few days. My mother went home after 8 hours in the ER. The pain did not subside at all for about 2 days. Laying on my back was the only way I was somewhat comfortable. I attempted to lay on my side, but it felt like a bowling ball was in my abdomen. Words cannot express the pain I was experiencing. When you have pancreatitis, the pain is constant. I am struggling to find a comparison that would allow everyone to comprehend what this felt like. The treatment for acute pancreatitis is a large amount of IV fluids administered very quickly in order to flush out the medication that caused it, in addition to decreasing the inflammation. I was on high doses of IV pain medication, but the pain meds did not begin working until the second day. I also received an ultrasound on the second day to rule out gall stones for sure. As suspected, it was not gall stones. In addition to my Primary Care Physician (PCP), a gastro doctor was brought in on the case. He informed me that Imuran was the medication that had caused pancreatitis. Statistics show that 1/100 people taking Imuran can get pancreatitis. The third day, an anasthesiologist visited and put me on a PCA, a device that administers pain medication through IV when I push a button. The PCA effectively alleviated my pain.

I was unable to eat or drink, even water, for over 3 days. It was torturous. At first I did not really care because I was super nauseaus. But slowly, that subsided and I was starving. When you have pancreatitis, the enzymes that are responsible for assisting in breaking down foods are elevated. The normal Lipase levels in people without pancreatitis is 70-700, somewhere around there. My levels were 3100 the first day, escalating to 3600 the second, and then quickly began decreasing. The third day my Lipase level was 2000. Fourth day, 839, etc. I was in the hospital for a total of 6 dats. I started introducing clear liquids into my diet on the fourth day. That went well, so the next day I was upgraded to soft foods, low fat diet. It is important to re-introduce foods slowly in order to allow the pancreas time to rest and reduce inflammation. The low fat diet went well, and the next day I was discharged (Christmas Eve). I was so lucky to be home for Christmas!

I am doing pretty well, but I have to be aware of what I am eating and drinking. I have to limit sugars and carbs, and mainly eat a low fat diet consisting of proteins, fruits, and veggies. So far, everything has gone pretty well. I still have a little pain at times, but NOTHING compared to what I felt when the incident began. I have to stop the Imuran of course, which is depressing because it is yet another medication that I am unable to take in the hope of effectively treating my Behcet's. I have tried approximately 24 medications or so, and the number of meds that are left to try are dwindling. And those that remain are very dangerous. I don't know what to do. I am feeling quite hopeless and out of control. It is so hard to not know whether something is going to help, whether I will get my life back, whether I will be able to work or get married or have kids. These thoughts are constantly running through my head. It is so stressful having a rare and chronic illness that is uncontrolled. It is becoming increasingly isolating and depressing. Although I try to keep my spirits up, at times it is just so hard to do so. I am thankful that I am recovering because that pain was absolutely awful. No one should have to go through that. My dad has had pancreatitis, and he agreed. All the doctors and nurses concurred, stating that it is an extremely painful thing to experience.

To wrap things up, I will follow up with my PCP to check my Lipase level and determine how I am doing. I will also have an appointment with my pain management doctor in Chicago Jan 7th. My Rheumatologist told me to rest and cancelled my appt for Jan 10th. If anyone has any ideas for me in terms of coping with everything, please let me know. I am always open to ideas or suggestions people may have to reduce stress or to continue to think positively. I generally try to find the positive in any situation, but the longer this disease persists this way, the more challenging it is to cope. Again, thanks for reading! I hope everyone had a wonderful Christmas holiday and was able to celebrate with family and friends. I am truly thankful for my family, especially my mother. She is always by my side, especially during difficult times like the pancreatitis. Thank you, Mom, from the bottom of my heart.

Dating with Behcet's

I have spent some time writing about the many difficulties that come with living with a chronic illness and chronic pain. There are obviously physical challenges, psychological/emotional challenges, and difficulty with interpersonal relationships. Especially dating. It is extremely difficult to date while simultaneously coping with a severe and chronic illness.

I struggle the most with when to tell a man that I have this disease. I have tried it both ways, and it always seems to fail. I never used to have problems getting a boyfriend. From high school through graduate school, I was always in a relationship. Now that I am ill, it creates problems with dating that other people don't have to deal with. When I tell people up front that I have a rare autoimmune disease that prevents me from working right now, but that I am currently working on finding an effective treatment to put me into remission, guys get freaked out. I don't tell them what disease I have, nor do I make it sound horrible. I don't act like I need attention or someone to take care of me. I portray my situation in the most positive light possible. Don't get me wrong, I am sure hearing that kind of information early on is extremely overwhelming for the other person. But what else am I supposed to say? I don't like to lie. When someone asks me "How was work today?" I don't want to lie and say it was fine. I tell them I am taking some time off after getting my doctorate and am working on writing a book, which is the truth. People are curious and tend to ask a lot of questions about my disease. I typically respond by saying we can discuss more about it when we get to know one another better, but I just wanted to be honest about my situation. I have had men say they don't care, but then later on they end up saying it's too much for them to handle.

I don't know how to handle this anymore. I just want to find someone who will love me for me and who can accept the illness as just a small part of my identity and that it does not define me entirely. I am so sick of being treated like some sort of "freak." It is difficult when people fail to look at me as a whole person. Most of the time I feel like some sort of freak, mainly because of the weight I have gained from steroids. The way I look currently is not the way I normally look and unfortunately people cannot look beyond my looks. It makes me feel like I am unlovable and that I will never find a man who can love me and support and accept me. Everyone deserves to be loved. And I am not exception. I want to get married and start a family. I truly hope that in the near future I can find a man who will be just what I need, someone who complements me as a person and and someone who will allow me to share my love with him.

If anyone has any tips on how I can make this dating process run more smoothly, please do not hesitate to let me know!

As always,thanks for reading!

Severe reaction to medication...Trip to ER

Some of my medications are filled at a compounding pharmacy. It is a family owned pharmacy and those who work there are extremely kind and helpful. Last week I went to pick up a prescription refill, and the owner of the pharmacy inquired as to how I have been feeling lately. I informed him that I have not been doing well. He and his daughter brought up the topic of a medication called Low Dose Naltrexone (LDN). I am well aware of this medication, as my father had sent scholoarly journal articles regarding the usefullness LDN in a variety of diseases, specifically autoimmune diseases. It is also utilized in patients with MS, cancer, among many other problems. Since the articles specifically mention the effectiveness of LDN in treating Behcet's, I have been researching the drug. The literature that discusses treatments for Behcet's is quite limited, so you can imagine how interested I was in further pursuing my research.

LDN is designed to repair the body, particularly boosting the immune system, and works while the individual is sleeping. It is not FDA approved or patented, and is very cheap. It is typically considered a safe medication and does not have side effects or is not known to interact with medications. One exception to this is narcotics. Given that I am on high doses of narcotic painkillers, I immediately dismissed this as a possible treatment for my Behcet's. The typical dosage used to be 50mg, but has recently decreased to 4.5mg. The pharmacist informed me that since the dosage had been reduced, although still remaining effective in the treatment of chronic illnesses, it could be a possible treatment for me to consider. He then gave me a referral to a naturopathic/alternative medicine doctor who often prescribes LDN. Not many doctors prescribe this medication due to the fact that it is not patented and other doctors in the community typically frown upon those who do prescribe it. I decided it couldn't hurt to consult with this doctor and see what his thoughts were.

I was immediately placed at ease upon scheduling my appointment because the woman who I spoke with reassured me that I was "coming to the right place." She continued to inform me that this doctor is very helpful and has effectively treated numerous patients with diseases similar to mine. When meeting with a doctor who was completing his residency at the office, he obtained a thorough history of my medical issues, including the medications that I am currently taking. He strongly pointed out that given  the number and high doses of pain meds that I take, I would not be a candidate for LDN as a potential treatment. I was disappointed, but was still interested in seeing what the doctor had to say.

This doctor was very friendly, and stated that his first principle in working with patients is "do no harm." Which is actually what every doctor attempts to do. We discussed my case and he then introduced LDN. He informed me about the medication including how it works, how it may be extremely beneficial to me, and placed significant emphasis on the fact that this medication has ZERO side effects and is extremely safe. He continued by reiterating how safe the med is especially when compared to the numerous medications I have taken that are quite poisonous/toxic to the body. Needless to say I was extremely concerned about the potential interaction between LDN and the painkillers. He put me at ease, saying that it would absolutely not interact with the pain meds. He prescribed me wih the maximum dose, which is 4.5 mg.

This visit occured on Monday, December 10th. I waited to take the pill until about midnight, as I was going to sleep. Within approximately 30-45 minutes, I became violently ill. I experienced severe abdominal cramps, diarrhea, excessive sweating, runny nose, prickly / burning on every inch of my skin, and worst of all, akathisia. For those of you who aren't aware of what akathisia is, it is a severe form of restless leg syndrome, but affects the entire body. It is difficult to explain the subjective experience of akathisia. I have suffered from this many times, but this was by far the worst. It feels like your entire nervous system is out of control, which it is. It is almost similar to anxiety/panic, yet different. You feel the need to stretch every muscle in your body in attempt to rid yourself of the horrible feeling. The body thrashes, especially legs and arms. After feeling this way for about 30 minutes i woke my mother up, telling her what was going on and that I needed to go to the hospital. While she was getting ready, I begged her to call 911. She insisted on driving me herself.

Upon arriving at the ER, my mom asked for help getting me into a wheelchair while she parked the car. I was wheeled to the registration, where a nurse asked about my demographic information and why I was there. I told her the best I could, as I was extremely sick and uncomfortable. Out of nowhere, my entire body cramped up and the motion catapulted me out of the wheelchair and onto the hard wood floor. I hit my head and the entire right side of my body. The nurse asked for help, and they successfully got me into a room. My mother had to discuss what was going on with the doctor as I was in and out of consciousness and was unable to communicate much of anything. It was terribly frightening. It was then that I began to receive what my mother and I believe to be improper treatment. Once my mother informed them that I was taking LDN, they immediately treated me like a drug addict. This is because Naltrexone is also utilized as a treatment for individuals with an addiction to opiods. It works by entering and filling the opiod receptor sites in the brain so that the painkillers are unable to be effective. If one takes this medciation in conjunction with narcotic pain meds, it will send the individual into extreme withdrawal. This is essentially what happened to me. I was experiencing sudden withdrawal symptoms from narcotic pain meds.

I was given Ativan, Benadryl, and Dilauded (pain med that I take). At no point in the visit was I assessed for the head injury that I incurred by falling out of the wheelchair and onto the floor. The doctor and nurses were not kind at all. They were not informing my mother what was going on. At one point, they asked her to leave the room because the convulsions/akathisia had ripped my IV out and the salene was spraying everywhere. They cleaned me up, and my mom re entered the room. At this point, they felt that I was okay to go home. Typically, whenever I have a bad case of akathisia, my PCP always hospitalizes me because the high doses of Ativan to counteract the reaction to the medication causes severe imbalance and dizziness, thereby making it unsafe for me to get up and walk around. This is exactly what happened. Whenever a patient is discharged from the ER, the doctor is required to discuss the diagnosis and treatment with the patient or whomever is with that patient. Since I was rather out of it, the doctor should have discussed the information with my mother. The doctor did not come in to discuss anything. Instead the nurse, who was very unfriendly and who fought with my mother about blood test results that indicated that my blood clotting numbers were1.1. Given that I am on Cumadin, my therapeutic range should be between 2-3. The nurse insisted that this 1.1 was perfectly fine, which in fact, is dangerous for me. When this INR number is below 2, I am at risk for a blood clot.

When I got home, I walked straight into a wall so hard that I hit my head and fell down. My mom was so upset because she believed I should never have been released, and I agree. When my mother informed the doctor that I was prescribed the LDN to treat my Behcet's, the doctors weren't too forthcoming about believing this. I think that they assumed that I was taking this medication in order to comply with a rehab program of some type because I was addicted to pain medications. This is ABSOLUTELY not the case, and I have multiple doctors, including my pain management doctor, who can vouch for this fact. My mother requested that the doctor contact my PCP to determine the correct course of actions, which like I mentioned previously, usually means admitting me for observation and continued treatment in order to reduce the side effects of the medication reaction. The doctor did not contact my PCP.

I apologize for this being such a long post, but this was an EXTREMELY traumatic event for me. I was so excited to try a treatment that was supposed to be low risk, and it ended up having drastic consequences. It was such a scary experience that I am still trying to process everything. Today I contacted the pharmacy and the prescribing doctor to inform them about the incident. I am going to file a formal complaint to the hospital about how I was treated. There were more specific incidents, but I will not go into all of the details. It is important to be an advocate for yourself because otherwise no one else will do it for you. My mother is in agreement with me and is completely supportive of my choice to move forward by contacting everyone involved.

I could discuss additional details about this experience, but then this post would be even more lengthly! I am going through so many different emotions....Anger, frustration, sadness, hoplessness, etc. I was totally let down by the fact that not only did this treatment show any promise, but it resulted in an extremely dangerous circumstance. People can die from going through this typie of withdrawal. I am so glad to be feeling better, don't get me wrong. But now I need to advocate for myself so that this doesn't happen to anyone else. I believe the prescribing doctor was neglectful in that he did not examine me, didn't take blood, failed to contact any of the 3 doctors involved in my case. He should have AT LEAST contacted my pain management doctor to determine whether or not she thought it would be safe for me to take LDN in conjunction wtih my pain meds. I should not have been given this medication and been told that there would be absolutely no interaction with anything and that it ws perfectly safe. To try and wrap things up, I feel that I was treated unfairly by multiple parties. This is the one hosptial that I go to as it is close by and I often need to be hospitalized when complications occur from my disease. I strongly hope that I was not labeled a "drug seeker" or "addict," as this will remain in my record and will complicate things every time I seek treatment there. I understand that there are many people in the world who suffer from substance abuse problems, but I should not have been judged without the doctor obtaining adequate information regarding my case. All he had to do was contact my PCP, and look through  my previous health records to learn that I take my medcations as prescribed.

If anyone has any ideas as to what they think I should do moving forward, please let me know. I am not sure if the doctor who prescribed this can be sued or not. I was told by a friend that unless you have lasting damage from being mistreated. I am really confused and angry and saddened by what happened. Thank you for taking the time to read this long post. I am so thankful for my wonderful mother who is always there to take care of me. I don't know what I would do without her. I hope that I am able to get some sort of closure with this incident, by informing the risk management/patient advocate at the hospital of the circumstances around this visit. Like I mentioned, I could potentially have some kind of head trauma that was completely ignored by the doctors/nurses.

Please feel free to let me know if anyone has experienced something similar, or how you would proceed. :)