So here’s my story thus far:
January 2, 2007
Don’t remember much on this day, remember being in the St. Luke’s Hospital waiting room in pain. I remember lying down in the waiting area in the chairs, because I found lying down helped the pain somewhat. I remember my dad kept asking if the pain was getting better- answer was always “No”. Back then my dad was always there whenever I had to go into the hospital…Went in. They did an X-ray to check for Appendicitis. They believed it was the gallbladder- based on the description and location of the pain.
I was scheduled to go to Nuclear Medicine the following day for a HIDA (hepatobiliary iminodiacetic acid) scan. I remember Jennie Mason’s mother as my nurse- She was really nice. (I’m glad there are a few people during this process that have stuck out in my mind- as a good impression.) Here they injected a radioactive tracer into my IV to “light up” my gallbladder and to check for things such as gallstones, and determine size and all that. After then they injected into my IV something that was equivalent to eating a fatty meal. (Gallbladder releases bile to break down fat) OUCH! I was in tears on the table due to so much pain this caused me.
At the end the test resulted in showing that my gallbladder was inflamed and did not eject everything out of it correctly. I was scheduled for surgery (Cholecystectomy)- by Dr. Nelson. Never told of any of the side effects from having the gallbladder out, nor was told that most people have it removed when they don’t need it to be removed. Still experienced pain after. Ended up back in the ER a couple number of times more. They had done more x-rays, CTs with and without contrast, and enzyme checks with all the blood work. Liver Enzymes were elevated slightly at this time.
Tried to get a hold of Dr. Nelson…but he doesn’t do follow ups. So I had to find a Gastroenterologist- Dr. Qaio.
Dr. Qaio was a great GI doctor; and was very involved in my case. If I had to recommend a GI doctor, it would be him. (I’ve heard stories about the others) With him I had a different tests done. I had a upper endoscopy (looking down into the esophagus, stomach, and duodenum- first part of small intestine), a colonoscopy. All seemed normal. Took 3 different breath tests to check to see if I lacked certain enzymes (to see if diet was cause of the pain)- checked for fructose intolerance, lactose intolerance, and bacterial overgrowth. Turned out that I’m lactose intolerant and I had bacterial overgrowth in the small intestine. Took some pretty strong (and expensive I might add- $800) antibiotics.
After all this I was still experiencing pain, and Dr. Qaio refered me to a biliary specialist in Iowa City- Dr. Silverman. With Dr. Silverman I had two ERCPs (Endoscopic Retrograde Cholangiopancreatograph), where they go down to check the bile duct. The first one wasn’t successful because my bile duct was inflamed so much. They put a stint in my pancreatic duct. Two weeks later I went in for my 2nd ERCP, where they took the stint out of the pancreatic duct, did a sweep of the bile duct, did a small sphincterotomy (cutting of the sphincter), and placed a stint in the bile duct. Ended up getting acute Pancreatitis from this procedure– which caused pain almost equal to if not greater than what I experienced everyday…ON TOP OF the pain I experienced everyday. Was hospitalized for almost a week. After this I was better for a while.
During this time, after getting over my fears of needles, I wanted to get into the medical field so I started Radiology School in Cedar Rapids. I loved it! I loved the people I met, worked with, and the patients I got to help.
After a while, my health started to get in the way. I ended up having to be hospitalized, due to pain and the fact I was always nauseous and throwing up. They ended up doing another Nuclear Medicine Scan (I remember Bonnie done this, she was always nice to me in the radiology department at Mercy.) where they checked to make sure there wasn’t any holes/leaking from where my gallbladder used to be from the surgery. I was given Demerol then, and found out the hard way how awful that medication was. I don’t remember much after that was given to me except being taken upstairs, and throwing up as soon as I got to my room. I kept up with my studies while being hospitalized for a few days.
I can’t tell you how many times I ended up being taken to the ER while in clinic during radiology school. The one that sticks out the most to me is at St. Luke’s, when I was in the middle of performing a routine chest X-ray and in the middle I had to ask Cindi to come in and take over. I sat down and couldn’t hold in the tears anymore from the pain. I started panicking, and all seemed like a blur. I was wheeled down to the ER. I was hyperventilating and was having an anxiety attack, that I didn’t remember much of what was going on. After that incident I was hospitalized again for pain and nausea. Dr. Qaio did another endoscopy (had a mild case of gastritis). He also did another breath test to recheck for bacterial overgrowth (still had that too- round two of antibiotics).
After I got out of the hospital I had a talk with the radiology instructors. I had slipped from a honor student in the first semester (with a 4.1 GPA) down to a low B/high C student. We thought it’d be best that I take medical leave and return the next year, after I got my health figured out. Kept ending up in ERs, and blood tests kept turning out to be normal. Doctors thought I was an addicted drug seeker and that they of themselves were causing the pain, so I cut off my own supply of narcotics for over 6 months, to prove that the pain was not caused by the narcotics themselves and that I wasn’t seeking them. (ER visits I refused to have them give me any narcotics, instead they’d sedate me enough with benadryl and/or anti-anxiety medications to put me to sleep long enough to get me out of the ER)
Dr. Qaio said he had done all that he could do, that my case was far too advanced for him and recommended I continued under Dr. Silverman’s care. But Dr. Silverman said he had done all that he could. Dr. Qaio referred me to the Mayo Clinic up in Rochester, MN. First time I was denied by insurance, however after more ER visits and no results, the second time insurance approved. Later I got a call from the Mayo Clinic informing me they did not want to take on my case, due to the fact that they have seen many cases like mine and have not found answers to most of them.
I was referred to Pain Management at Mercy, where they did trigger point injections into the costocartilage of my lower right ribs. (They thought maybe that the costocartalige was inflamed and causing the pain). This seemed to help for maybe a week. I called back and they didn’t have any more suggestions.
Well, my year was up and I ended up trying to go back to Radiology school again. Lasted about a month- before I was hospitalized again and had to once again take medical leave. This is when I allowed them to start giving me narcotic pain medication again- to help control the pain.
Later, Dr. Silverman took a look at my ER visits notes. He performed a 3rd ERCP. I woke up during this, with the tube down my throat. They had to hold me down on the table while I was awake until he was able to finish the exam. I was fully awake when they were done and while being taken out into recovery. He said that he wasn’t able to go into the bile duct, but was able to look and it looked clear. And that my high tolerance of narcotic pain medication from the two years of dealing with them, had made it impossible for him to give me anymore medication to put me back under during the procedure. (They don’t put you under anesthesia but knock you out with Vercet.) Again, ended up with Pancreatitis.
Because he didn’t see anything, Dr. Silverman now believed I was hooked on narcotics, and the pain was psychosomatic. He referred me to Dr. Behrendtsen– He believed that the pain wasn’t psychosomatic, but functional. He connected me with pain management, who only believed me to be an addicted drug seeker for narcotic medication. Through them I got off narcotic pain medications again, and tried anti-inflammatory medications, blood pressure medications, anti-depressants. Nothing seemed to work. After a while Dr. Behrendtsen allowed me narcotics again, because I kept ending up in the ER in pain, we wanted to keep me out of the hospital.
After more ER visits, Dr. Behrendtsen talked to Dr. Silverman and told him he believed my pathology to be functional. They scheduled a 4th ERCP. This time Anesthesia was involved, so I would not have another repeat of waking up in the middle of the procedure. Another bile sweep was produced, and another Sphinctorotomy. We were all convinced that this would solve the problem, because my liver enzymes had shown to be fluctuating–showing that the duct was spasming, cutting more of the duct would allow it to stop spasming and for the bile to flow freely. This seemed to make things worse. But after more ER visits and time things settled back down to a semi-normal life.
After a while I attempted to start school again, I decided to go to the University of Iowa and become a biology major, with Pre-med requirements in mind. With everything I had been through I wanted to become a doctor, and help others going through stuff I go through. Here I lasted half a semester- before I started missing too many classes and falling behind. Once again, medical leave.
Pain Management refused to treat me. Dr. Silverman believed it to be psychosomatic. GI doctors believed that it was from narcotic usage. Only one to stand by me was Dr. Behrendtsen.
Last year in November I was hospitalized for a month, because I was unable to keep down anything (solids, liquids, nothing). Anything I put in my stomach came right back up. One nurse told me that I was bulimic and that I had a problem and needed help. Dr. Behrendtsen tried another trigger injection, needless to say, did not do anything. After a while though I was able to keep food down once again.
I was referred to GI again, and they ran some stomach emptying tests in Nuclear Medicine. Found out Solids emptied my stomach too slow and Liquids through my stomach too slow. With this result they believe me to have a small case of Gastroparesis. I was also referred to Women’s Health because they believed my symptoms showed some evidence of possible Endometriosis. I have reduced my narcotic usage due to the GI recommendation- now I get a 12 day supply to last me a month, to take only when I need to.
January 11, 2010
Over 3 years after this all started. I had surgery again to check for Endometriosis and to do a small exploratory to where my pain was. No evidence of Endometriosis. Scar tissue where my gallbladder was (not enough to be causing the amount of pain I’m experiencing). They took a biopsy and it showed evidence of inflammation.
February 22, 2010
Post op exam. Another trigger point injection. This time it seemed to hurt more than the prior ones, i started bawling like a baby as it was being done. They think it’s because they hit the exact nerve causing the pain. *fingers crossed it helps* I’m being referred back to GI clinic. They believe it could possibly be Vasculitis. They want to do an MRI of my abdomen. They aren’t certain of anything still. If I don’t get answers here I will be referred to the University of Chicago. (I guess they have one of the top GI clinics in the Midwest).
May 13, 2010
So I have seen a liver specialist. They think it’s Fatty Liver. I’m to limit alcohol use and try to loose 15-20 lbs in 5 months. I’ve also seen a rehabilitation specialist for chronic pain. They tried what they call Litecure. It’s this laser they shine over the painful area and it releases photons to help promote healing. I had this done last week. Didn’t help. I also saw another doctor, and he went along with the fatty liver theory. He started me on Actos, a diabetic medication (though I don’t have diabetes) and he put me on a new diet:
400 cal meals 3 x a day
High in carbohydrates and starches
No meat, low protein intake
(I’m already lactose intolerant)
So far it’s not helping. In fact, I was just hospitalized this past weekend. My liver enzymes are back to normal. But they did a CT that showed the duodenum in the small intestines was dialated which could point to an ileus or a bowel obstruction, so they kept me overnight. The next day they did an x-ray and everything was back to normal. They kept me another night for pain control.
May 27, 2011
Been about a year since I’ve updated this thing. Was hospitalized twice since. Once back in October and once again this past month. They told me that they believe that it’s Sphincter of Oddi Dysfunction and that they cannot go back in (ERCP) and do anything else because of my history with Pancreatitis and other complications and risks. Basically Risks outweighs the benefits in their eyes. So basically now it’s merely pain control. So increased my meds. Now I am on a Fentynal Patch 75 mcg/72 hours and take Oxycodone 5mg-10mg for breakthrough pain. I am also seeing a therapist now and trying Biofeedback therapy. It’s still early in the therapy so I don’t know for sure if it’s making a difference.
August 28, 2012
It’s now been well over a year since I’ve updated this. Since then I have tried many pain medications (Fentynal – Patch, Dilaudid, Oxycontin, Methadone, Ms Contin- Morphine CR)…I am now off any controlled released medications, which are to provide around the clock pain control. I am only on the oxycodone right now (20-30mg) for breakthru pain and zofran for breakthru nausea/vomiting. I am glad to be off some of the medications! I am also taking Hydroxyzine to help the pain medication work. Along with a handful of other medications (Ursodiol, Reglan, Bentyl, Miralax) and some psych medications (Prozac, Lamictal, Seroquel and Xanax) It really does seem like a LOT of medications- and it is!!! I had a real bad flair up towards the end of this last month, for about a week. I was in the ER 6 times in just over a week- and no matter how much I asked they would not admit me for pain control. I have also been through 3 sessions of acupuncture, though I’m not sure if it has really made any significant changes or not…it hasn’t made anything worse (I believe).
Right now I’m relying heavily upon my coping skills (Distraction, Listening to Music, Imagery, Meditation, Deep breathing, along with regular therapy sessions) My primary care doctor told me I have to start getting “Emotionally Stronger” to deal with this pain- since I am bound to have it for the rest of my life. I just need to take things one day at a time.
August 30, 2012
Found out that I was referred back to the Gastroenterology Clinic at the University of Iowa, once again! So instead of seeing someone who will just say they can’t do anything again, I am asking my doctor if I could get referred back to Dr. Silverman again instead. (Since he’s the only one who’s done any procedures in that area) Mom thinks I should ask to see a neurologist. Relying heavily on the mental coping skills. It just gets so tough at times…I just wish I were better!