I, too did my own searching for it and I would have loved more information. I haven't blogged or written anything here in years. There are a lot of reasons that I haven't posted in a while. It's not a lack of something to write about. There are countless things that I could post but the two main reasons are 1: I haven't been well at all, and 2: I usually do everything from my iPhone. Blogging is just not easy on a phone. When I'm at work, I'm at a computer the whole time so I don't want to be on a computer at home. The reason I am blogging today is because I'm hoping this post will help inform and perhaps give hope to those that suffer from chronic pain. I want to share my experience with an intrathecal pain pump. Every search and post I read was very old and not informative enough.
First off, I will give you the back story. I'm a 32 year old wife and mother of two daughters now age 9 and 7. In October of 2009 things seemed perfect for me. My daughters were (and still are) healthy, I had started a new job that allowed me to work at night (so I can be with my children during the day), provided me with great health insurance which is very important because I've been diabetic since age 12 and financial stability. Life came together. I was happy and relatively healthy. I had a few problems here and there but nothing really major for a while. My health insurance was so awesome, I was able to get an insulin pump at no charge to better manage my diabetes. I was apprehensive at first, but my trainer at work had one and highly recommended it. And at no cost, why not at least give it a shot? So I did and I loved it, but that's an entirely different story. Anyway, life was great. Thanksgiving was great, Christmas was great, even New Year's was awesome. However, toward the end of January 2010 things had changed. This is my story. First I will start with how I ended up in chronic pain. It's a long story so bare with me. I started with horrible abdominal pain and nausea. I went to the ER and they couldn't find anything wrong with me. They said it was probably a stomach virus and sent me on my way. After two weeks of flare ups, the pain wasn't going away so I went back to the ER, again, they couldn't find anything wrong me. In February alone, I went to the emergency room twice. The second time, I had the same doctor that I did the first time I visited in February and he said "if this is the same thing I saw you for two weeks ago, I can't do anything for you. Do you want me to give you an IV?" He recommended that I see a GI doctor to have my gall bladder checked out. I left, declining the IV in tears.
I can't describe the awful pain. It felt like there was a hot knife in my right side and pain was shooting around to my back and up in between my shoulder blades. I took his advice and ask my primary care doctor for a referral to a GI doctor. The first thing he wanted to do was an upper GI and colonoscopy. This was in March. I thought it was weird thing to do to see a gall bladder but I agreed to do it. He didn't find anything. This is a doctor that just didn't care. I would tell him my symptoms and he would just ask the same questions over and over again. Uncomfortable questions like "is there blood in your stool." I swear he asked me this twice each visit. Overall, he was a jerk. It's like he didn't listen to anything I was saying. I asked him how my gall bladder looked and he said he didn't check it. Instead of checking it, he ordered blood work, a CT scan, an MRI. When those came back "fine," by this time I had 3 more ER visits, and it was May. He ordered the HYDA scan, that too was fine. In June, he ordered a gastric emptying study to see if my stomach was digesting slower. By this time, the radiography techs came to know me. And gave me the results of it immediately. They said my stomach digests 5% slower than other people. This could be normal for me. And it's only 5%. They warned me that the doctor I was seeing would tell me that my problem was the gastric emptying and advised me NOT to listen to him. The test was normal. This doctor has a bad reputation, and they were right. He told me my stomach was slow and that's what caused my symptoms. June saw another ER trip and apparently, the ER doctors put it in my chart that I was just seeking pain medication, even though I declined any medicines, I just wanted them to find what was wrong with me and make it stop. I repeatedly said "No narcotics, find what's causing the pain then we can treat it to make it go away." But they wouldn't help me.
Each time I went back they looked at my previous visits and refused to do anything more. I was frustrated. At the end of June, I always take time off work so we can do something for my husbands birthday. That year we went on vacation to the beach for a few days with my brother and his family. I used all of my time off that I had left at work for this family time. All the calling out for days at a time and tests burned through most of my days. But I wasn't giving up my vacation. My moms house is on the way home from the beach so we spent the last night of our vacation there. By morning, we needed to make the 3 hour drive home so I could go to work the next night. I couldn't move come. I felt so weak and sick from the pain that my husband had to drive us home. (I'm a control freak, I don't let anyone drive.)
The next day, I went back to work in so much pain that I was nearly in tears. I called my husband on my dinner break. I didn't know what to do. I went to my car to lay down and talk to him. I told him I couldn't go back to the emergency room, they wouldn't help me. My doctor wasn't helping me. The last thing he did was order lab work. I had to drive to 4 different labs only to find out that the blood work he ordered could only be tested in Italy. That's right, Italy. As if I could go there for blood work! My husband didn't know what to tell me. I didn't know what to do so I just went back into work. On my way back to my desk, a friend of mine stopped me and said I looked awful. And she asked if I had been tested for Pancreatitis. She explained that I needed to get help. My symptoms were similar to her fathers symptoms and he didn't get help in time. He died in the hospital after a week. I told her that I didn't know where to go or what to do. She suggested I go to a hospital that is out of the this medical network so they couldn't see my previous visits. I took her advice and left work early. I went to a hospital that is about 40 miles away and out of the hospital network. It actually wasn't busy at all. I walked up to the desk, all I could say was help me. Driving there, I felt like I was in a game of Mario Kart. It had taken a toll on me and it was after midnight. They took my information and took me straight back. I was discouraged. I felt like no one would find what was happening to me. The doctor came in, pressed on my abdomen where it was hurting, ordered lab work, and gave me enough pain medicine to help me sleep. A couple of hours later, he came back in and told me I had acute pancreatitis.
I didn't believe him. He printed the lab work to show me. It was about 5am when I sent my husband a text message about it. We both didn't know what it entailed or the treatment. But finally... Finally after months of tests, pain, tears, and frustration, I had a diagnosis. My husband and I both thought the doctor would give me a medication and I could go home but it was much more complex than that.
He admitted me into the hospital, had a PICC line place and I stayed for almost two weeks. Armed with this new knowledge, I went back to my doctor that was awful and told him what they said. I had my lab work in hand and results. He still didn't believe it. Now, 2 main causes are alcohol... I'm not a drinker. And the other is gall bladder. In August, he sent me to someone to have my gall bladder taken out in August. After it was removed, I felt a little better. I went 3 weeks without having any attacks. Then at the end of September, it happened again. I went back to the ER closest to me (the one that couldn't find anything wrong with me), and basically told them what was happening. That became a pattern. I spent another week in the hospital. October saw two more attacks. Each time, I had to tell them I was having an attack so they would order the blood tests. I also switched doctors in October, I couldn't go back to the other guy that just didn't care what was happening to me. This new doctor referred me to a Pancreatic specialist and sent all my tests to him. I saw him in November. He looked at them and told me that my pancreas didn't look bad considering all the attacks that I had. He recommended he put a stent in my pancreatic duct that would fall out in two weeks. I agreed and it was done two days before Thanksgiving. From the day the stent was placed, my pancreas started spasming. Anything caused it spasm, even water. December came, the stent had come out and I was back in the ER with pancreatitis again and other hospital stay in early December.... I recovered from that attack, I had a wonderful Christmas with my family. I was ready to get back to work. The doctors had told me that my last attack was probably due to the stent falling out and aggravating my pancreas. I was still having spasms, but my doctor went to South America on his Christmas vacation so I had to wait until he came back to find out what he thought about it. That opportunity never came.
I'll never forget December 28th, 2010. That was one of the worst days of my life. The only other thing that tops that was the day my father passed away. I had the worst attack ever. I was in so much pain that I wished I would die. I thought I would die. My husband was making lunch for our daughters while I called out of work and tried to lay down. After a minute of laying down, I announced to my husband that I had to go to the ER. Since he was cooking, I opted to drive myself. I don't know how to explain the sequence of events that happened afterward. When I got to the ER, they recognized me. While checking me in, they took my vitals. I was crashing hard. They took me to a room immediately. Because of what was in my medical record, the doctor made me call my husband on speaker phone to have him confirm that he would pick me up if she gave me pain medications. I was crying, I looked at her and said "I don't think I'm leaving here." I called him, and he confirmed he would pick me up. She ordered medications. I was in so much pain, I was screaming and crying. I called my mom and told her what was happening. I asked her if she could make the three hour drive to come see me. She said she wasn't feeling well and would come as planned the next week. It was then that I told her I love her and that I didn't think I was going to survive this attack. I thanked her for everything she had done for me and then I slipped into a pancreatic coma. I don't remember much of anything after that. The next time I remember opening my eyes, and saw the nurse board in the ICU the date said "January 21st, 2011." I cried my eyes out. All the machines, the beeping... the tubes. Oh the tubes. They were every where, up my nose, catheters... if a tube could be placed... I had one. Fluid was backing up into my body. I had a blood transfusion, I had my abdomen drained several times. Countless procedures. I couldn't tell you everything. When my doctor found out I was in the hospital, whatever he did... what ever he ordered saved my life. I was told my pancreas enzymes were in the 4,000's. If you look it up you will see that they shouldn't even be in the hundreds. I was told my triglycerides were 8,700. But this was just the beginning. I was devastated. I missed New Years, my daughters birthday. What did she think of me? What did my family think of me? I spent my birthday in the hospital. I scared my mother, my family, my children, my friends, everyone to death. I still wasn't out of trouble after that. They tried to let me go home in mid-February on home health care, with a PICC line, on 28-30 different medications for everything. Heart medication, kidney, liver, pancreas, triglyceride medication, pain medication, nausea medication, spasm medication. Being home didn't last long. I couldn't eat or drink anything. I couldn't even think about doing those things. I ended up right back in the hospital within a day or so. After another week or so, they tried to let me go home again on home health care again, and I came down with a fever. My home health nurse called my doctor. Ordered a CT scan and they found a pseudo cyst on my pancreas. Back in the hospital I went. They let me out the first week of March and sent me to a General Surgeon 35 miles from home. At my appointment, he took one look at me and admitted me back into the hospital for all of March. I couldn't take living in the hospital. He told me he would let me leave if I agreed to have a two feeding tubes, one in my stomach and one in my intestines. Somehow I went from "it's not that bad considering," in November, to "Chronic necrotizing pancreatitis" and "Really messed
up," in March.
Desperate to come home, I agreed to the tubes but then chickened out and ended up spending more time in the hospital. He found a blood clot in my arm from the PICC lines and then I finally agreed to let them placed the feeding tubes.