After getting my referral to Creighton, I called their office and talked with their amazing nurse, Kim. I would love to give this woman an award because she is amazing! She patiently listened to my whole story, what tests I had done, what doctors I had seen, what treatments I had tried. She got me booked for a Barium Swallow test, a stomach emptying test, an endoscopy with the doctor, and an appointment in his clinic later in the day. Stomach emptying tests are not too fun either. You have to eat some nasty scrambled eggs laced with radioactive material and lay perfectly still on a rock hard table for two hours under an x-ray machine. So after all the fun tests, I met my doctor. He reviewed all my previous records and tests, along with the endoscopy he had done. I was up to my 4th endoscopy now so I was pretty much a pro at this point.
My options were laid out pretty clearly. Medication wasn't able to control my reflux and it would only continue to damage my esophagus, which would do further damage and most likely lead to esophageal cancer. The other option was a surgical procedure called the Nissen Fundoplication. The stomach is wrapped around itself to prevent anything from coming back up from the stomach. However you have to find the perfect balance that allows food to go down, but not come back up. It does shrink the size of your stomach and usually prevents you from burping so you must be very careful about eating foods that expand (breads) and making sure your food is very well chewed so that it can go down. It also makes it very difficult and painful if you were to throw up. You are required to stay on top of any nausea-like symptoms by taking Zofran at the first sign of trouble.
Due to changing how your stomach works, the increased strain of pregnancy and the inability to throw up, it's not recommended until you are done having children. When the surgeon said that we would need to be done having kids before having this done, I cried right there in the office...and the entire way home from Omaha. I could not imaging being pregnant again with these symptoms. My reflux was worse now than it was even with pregnancy. What on earth would happen during a pregnancy!?!? In true male form, Josh says 'well, how much worse could it get?' Obviously, he wasn't the one choking on acid. After some discussions and debate, we decided we did want to try to have another and would love to add to our family.
God had other plans and after a year of trying and three rounds of bronchitis, we weren't sure how much longer we could delay having surgery and weren't able to get pregnant. On my last round of bronchitis, I ended up in the ER because medications weren't working and things were only getting worse. This lead to a diagnosis of asthma and going to a pulmonologist several times. We tried several medications, steroids, voodoo even, but I couldn't shake it. After a pulmonary function test, it was determined I did not have asthma after all--it was all from acid reflux coming up and me aspirating into my lungs. This seemed to be correlated to anytime I tried to work out and get in shape. I couldn't even jog anymore without acid coming up. After so many trips to doctors, tests, medications, and--of course--the medical bills, we decided we would schedule the surgery for this summer.
My surgery was July 1 and it was so strange waking up in the recovery room flat on a bed! I can sleep on my right side. I can lay flat. I can bend over and even eat after 7pm--all without acid coming up! One month out, I'm still on a liquid/soft food diet, but so far so good! It has been such a relief not waking up choking or randomly having acid come up. And sleeping in my own bed--it's glorious! I know I still have a ways to go in the recovery, but I'm already happy with the changes I've seen. I hope I can continue on this great path and stay acid reflux free!
Thursday, July 31, 2014
Friday, July 25, 2014
the Stomach Story, Part 2
Each winter would begin with a seemingly never ending cold, that would almost always turn into bronchitis. Eventually it was suggested I take an inhaler every day.
When we moved back to Nebraska 3 years ago, I had a case of bronchitis that I could not get rid of. Eventually it became pneumonia and required four shots of rocephin injections, lots of antibiotics, breathing treatments, oral steroids...blergh! After I finally got past this, it was recommended I get the pneumonia vaccine, however I had a bad reaction to it. This vaccine lasts for five years typically, but due to my reaction, I'm not able to have it again.
Meanwhile in heartburn land, I was having more and more constant heartburn. It didn't matter what I ate, everything seemed to burn and come back up. My Protonix was increased to 40 mg twice a day, a steroid inhaler twice a day, prescription Zantac 300 mg at night. Eventually I couldn't even lean to my right without stuff coming up--you could literally listen to it moving in my chest. I began sleeping propped up on our couch on nights when it was bad. I was very fortunate that my medications did control my heartburn. When I was not on these medications, I felt like a dragon--breathing fire all the time. Constant throat clearing, lots of coughing and about once a week, I would wake up in a coughing fit feeling like there was 'vomit' in my throat. I eventually figured out that it was stomach acid coming up and I was choking. So I was waking up choking--awesome right!?!?
Josh and I decided about two and half years ago that we'd like to try to have another baby, but we wanted to get this acid under control as I couldn't imaging going through another pregnancy with these symptoms. We started seeing another GI specialist in our area who did another endoscopy and kept me on the same medications and I was basically 'maxed out' in what I could take. My endoscopy showed a small hiatal hernia (very common) and some damage to the esophagus from the acid reflux. It also showed that my lower esophageal sphincter didn't work, which is what causes GERD.
In the meantime, I would have esophageal spasms, discovered after taking a long car ride and a lovely trip to the Rapid City, South Dakota ER. We realized that sitting for long periods of time also caused a lot of pain, including sitting at my desk job. So now car rides had to be broken up so I could walk around, which should have worked out well with a toddler who should need bathroom breaks, but Jolie is a crazy toddler who rarely goes to the bathroom! Instead of toddler breaks, we had to take Lindsay breaks. I was very lucky to have an understanding workplace that let me move my desk up higher so I could stand more at work. This all helped but the symptoms were still there.
My GI specialist sent me to Omaha to have manometry and pH study. It's a super fun two-part test. The manometry was first and you have a tube placed through your nose into your stomach. Then you swallow saline solution several times and the tube monitors how you swallow. This takes about half an hour if you are a good patient. After this is completed, you do the 24-hour pH study. A smaller tube is placed into your nose and down to your stomach. Once the tube (which they will call a wire, but when it's in your nose, it feels much bigger and I would definitely call it a tube!) they will tape it in place so it's behind your ear. This is hooked up to a monitoring box with a few buttons that you press while you are having symptoms. You wear this and go about a typical day for 24 hours. The looks you will receive while wearing this are rather comical and after awhile it was even fun to watch people kind of freak out and treat you like you were some walking time bomb, especially at the mall!
After all this was completed, I went back to my GI doctor for the results. The pH study was normal but my manometry showed some low motility, meaning my esophageal muscles looked weak and weren't pushing things (food and drink) down to my stomach like it should. He said this was concerning and wanted to consult with some other doctors, but if he had to guess, he thought I had Systemic Scleroderma. He wanted a month to 'think about it' then he's follow up with me once he decided who to refer me to. So in this month, I start researching and Systemic Scleroderma is an auto-immune disorder that hardens your organs. It's kind of horrible and typically the life expectancy is only about 5-10 years and it's a slow and painful way to go. So I was kind of freaking out. After the month was up I called his office non-stop to see what his decision was. After a couple of weeks (yes, weeks!) he said he was referring me to a rheumatologist who could look into this further. Not going to lie, I had been sick about this! What do you do when you find out you may be in for a very rough future with only 5-10 years left? Should I keep working? Should I stay home and spend as much time with my family as possible? It was a roller coaster of not knowing and lots of unanswered questions and prayers.
I met with the rheumatologist after anxiously sitting in the waiting room. Expecting the worst, I explained how I ended up in his office. I was so relieved when he even chuckled at the idea I had Systemic Scleroderma. He could tell by a few simple tests and checking my fingernails that this was not the case at all! Biggest sigh of relief EVER! Ironically he had gone to medical school at Creighton and knew they had a great Esophageal Center that was at the top of their field. After less than 15 minutes with him, I left with a referral.
Sometimes it's crazy the curve balls that God throws your way. But when you finally see the big picture, you realize He had a plan the whole time. It just makes you smile.
When we moved back to Nebraska 3 years ago, I had a case of bronchitis that I could not get rid of. Eventually it became pneumonia and required four shots of rocephin injections, lots of antibiotics, breathing treatments, oral steroids...blergh! After I finally got past this, it was recommended I get the pneumonia vaccine, however I had a bad reaction to it. This vaccine lasts for five years typically, but due to my reaction, I'm not able to have it again.
Meanwhile in heartburn land, I was having more and more constant heartburn. It didn't matter what I ate, everything seemed to burn and come back up. My Protonix was increased to 40 mg twice a day, a steroid inhaler twice a day, prescription Zantac 300 mg at night. Eventually I couldn't even lean to my right without stuff coming up--you could literally listen to it moving in my chest. I began sleeping propped up on our couch on nights when it was bad. I was very fortunate that my medications did control my heartburn. When I was not on these medications, I felt like a dragon--breathing fire all the time. Constant throat clearing, lots of coughing and about once a week, I would wake up in a coughing fit feeling like there was 'vomit' in my throat. I eventually figured out that it was stomach acid coming up and I was choking. So I was waking up choking--awesome right!?!?
Josh and I decided about two and half years ago that we'd like to try to have another baby, but we wanted to get this acid under control as I couldn't imaging going through another pregnancy with these symptoms. We started seeing another GI specialist in our area who did another endoscopy and kept me on the same medications and I was basically 'maxed out' in what I could take. My endoscopy showed a small hiatal hernia (very common) and some damage to the esophagus from the acid reflux. It also showed that my lower esophageal sphincter didn't work, which is what causes GERD.
In the meantime, I would have esophageal spasms, discovered after taking a long car ride and a lovely trip to the Rapid City, South Dakota ER. We realized that sitting for long periods of time also caused a lot of pain, including sitting at my desk job. So now car rides had to be broken up so I could walk around, which should have worked out well with a toddler who should need bathroom breaks, but Jolie is a crazy toddler who rarely goes to the bathroom! Instead of toddler breaks, we had to take Lindsay breaks. I was very lucky to have an understanding workplace that let me move my desk up higher so I could stand more at work. This all helped but the symptoms were still there.
My GI specialist sent me to Omaha to have manometry and pH study. It's a super fun two-part test. The manometry was first and you have a tube placed through your nose into your stomach. Then you swallow saline solution several times and the tube monitors how you swallow. This takes about half an hour if you are a good patient. After this is completed, you do the 24-hour pH study. A smaller tube is placed into your nose and down to your stomach. Once the tube (which they will call a wire, but when it's in your nose, it feels much bigger and I would definitely call it a tube!) they will tape it in place so it's behind your ear. This is hooked up to a monitoring box with a few buttons that you press while you are having symptoms. You wear this and go about a typical day for 24 hours. The looks you will receive while wearing this are rather comical and after awhile it was even fun to watch people kind of freak out and treat you like you were some walking time bomb, especially at the mall!
After all this was completed, I went back to my GI doctor for the results. The pH study was normal but my manometry showed some low motility, meaning my esophageal muscles looked weak and weren't pushing things (food and drink) down to my stomach like it should. He said this was concerning and wanted to consult with some other doctors, but if he had to guess, he thought I had Systemic Scleroderma. He wanted a month to 'think about it' then he's follow up with me once he decided who to refer me to. So in this month, I start researching and Systemic Scleroderma is an auto-immune disorder that hardens your organs. It's kind of horrible and typically the life expectancy is only about 5-10 years and it's a slow and painful way to go. So I was kind of freaking out. After the month was up I called his office non-stop to see what his decision was. After a couple of weeks (yes, weeks!) he said he was referring me to a rheumatologist who could look into this further. Not going to lie, I had been sick about this! What do you do when you find out you may be in for a very rough future with only 5-10 years left? Should I keep working? Should I stay home and spend as much time with my family as possible? It was a roller coaster of not knowing and lots of unanswered questions and prayers.
I met with the rheumatologist after anxiously sitting in the waiting room. Expecting the worst, I explained how I ended up in his office. I was so relieved when he even chuckled at the idea I had Systemic Scleroderma. He could tell by a few simple tests and checking my fingernails that this was not the case at all! Biggest sigh of relief EVER! Ironically he had gone to medical school at Creighton and knew they had a great Esophageal Center that was at the top of their field. After less than 15 minutes with him, I left with a referral.
Sometimes it's crazy the curve balls that God throws your way. But when you finally see the big picture, you realize He had a plan the whole time. It just makes you smile.
Wednesday, July 23, 2014
the Stomach Story, Part 1
After getting a few questions about my surgery, I thought I'd explain the whole thing. And since I can be a bit wordy, I thought I'd post it on our highly neglected blog rather than some giant Facebook status update. To be honest, Josh has been running the blog for the past couple years because blog and I weren't seeing eye to eye.
I think I've always some some stomach issues. I haven't been able to burp for as long as I can remember. In college, I started having more indigestion and heartburn and was told to do 2-week treatments of over the counter medicine such as Prilosec. This worked for quite some time and would keep things chugging along. I would probably do a two-week treatment once a month.
After we were married 8 years ago, my symptoms continued to get worse so I was told to take Prilosec daily. This went on for several years until I was pregnant with Jolie about 5 years ago. Pregnancy was absolutely horrible for me. I had horrible nausea and lots of swelling and the worst heartburn. In fact, I started all this before I even had a positive pregnancy test! My OB prescribed Zofran for the nausea and it was my life saver. I was also told to increase my Prilosec to twice a day. After the first trimester, symptoms did not improve--in fact, they continued to get worse. I would wake up with what I thought was 'vomit' in my mouth and freak out that I was throwing up. I was given the standard heartburn recommendations to sleep elevated, on my left side, don't eat late at night, etc. Eventually my OB realized how much heartburn medication I was taking and wanted me to see a gastroenterology specialist.
The GI doctor said it was probably all from my pregnancy and it should get better after I deliver. He did switch my medication to something a little safer for the baby, Kapidex twice a day and Carafate in the evenings. People say your baby will have lots of hair if you have heartburn, so I was expecting a monkey! However our little Jolie arrived on February 26, 2010 and was bald and could be and stayed that way for over a year!
After Jolie was born, things did improve quite a bit. Not completely, but I was able to cut back some of my medications. I began taking 20mg of Protonix once a day. I was still limited to laying on my left side, but it was manageable because with a newborn, any sleep is wonderful!
I think I've always some some stomach issues. I haven't been able to burp for as long as I can remember. In college, I started having more indigestion and heartburn and was told to do 2-week treatments of over the counter medicine such as Prilosec. This worked for quite some time and would keep things chugging along. I would probably do a two-week treatment once a month.
After we were married 8 years ago, my symptoms continued to get worse so I was told to take Prilosec daily. This went on for several years until I was pregnant with Jolie about 5 years ago. Pregnancy was absolutely horrible for me. I had horrible nausea and lots of swelling and the worst heartburn. In fact, I started all this before I even had a positive pregnancy test! My OB prescribed Zofran for the nausea and it was my life saver. I was also told to increase my Prilosec to twice a day. After the first trimester, symptoms did not improve--in fact, they continued to get worse. I would wake up with what I thought was 'vomit' in my mouth and freak out that I was throwing up. I was given the standard heartburn recommendations to sleep elevated, on my left side, don't eat late at night, etc. Eventually my OB realized how much heartburn medication I was taking and wanted me to see a gastroenterology specialist.
The GI doctor said it was probably all from my pregnancy and it should get better after I deliver. He did switch my medication to something a little safer for the baby, Kapidex twice a day and Carafate in the evenings. People say your baby will have lots of hair if you have heartburn, so I was expecting a monkey! However our little Jolie arrived on February 26, 2010 and was bald and could be and stayed that way for over a year!
After Jolie was born, things did improve quite a bit. Not completely, but I was able to cut back some of my medications. I began taking 20mg of Protonix once a day. I was still limited to laying on my left side, but it was manageable because with a newborn, any sleep is wonderful!
Subscribe to:
Posts (Atom)