Hi everyone! I am new and honestly have never even been a part of a forum before. I decided to share my story in hopes of moving past my anger and depression. No one in my family seems to understand and it is just so difficult to explain to someone that has never experienced this type of pain. I will try and keep my story brief.
I am a 39 year old mother of two and grandmother of one. In 1997 I began having a dull ache in my upper left quadrant. I ignored it, thinking it was no big deal. Within a few months I could not eat without having horrific pain. After a visit to my PCP and an ultrasound I had emergency surgery. My spleen weighed 9 lbs. That was in November of 1997. The doctors could not explain what happened to my spleen. I had not had any type of infection nor was there any trauma that could have caused such a large spleen. Tissue samples were sent away and thankfully came back benign. No other explanation was given. Within a year of the splenectomy I began having episodes of pain in my upper to mid right quadrant. I never had diarrhea but did develop constipation. These episodes would last anywhere from a few days to a few months. Some were more severe than others. During the severe attacks I would make a visit to my PCP (a couple occasions I ended up in the ER) and they would run some blood tests. A few times they did perform an ultrasound. All test results came back fine but I lost 15 lbs. My PCP convinced my that there was nothing wrong and I basically gave up. I lived with these attacks for years until they increasingly became worse. About 3 years ago I ended up back in the ER. Same thing blood work, ultrasound looked fine. They did perform x-rays and said that I may have a small kidney stone. I ended up back at home with pain medication. I missed an entire week of work because I was so sick. I had no appetite because of the pain therefore I wasn't eating. After about a week the pain became bearable (without pain meds) and I returned to work and continued living with the attacks. I have to add that I have a very high pain tolerance or so I have been told. I had both of my children natural and lived with horrific pain of my enlarged spleen among other painful injuries. I hate taking pain medication so I have to be in complete pain and agony before I will take anything.
Ok to speed things up a bit....the stress in my life as multiplied by 100 in the last 18 months for many reasons. The attacked seemed to get more frequent and intense until I could no longer function. In March of this year I ended up in the ER again with severe pain on my right side and vomiting. After a CT scan I was admitted to the hospital with a rather large kidney stone. After 3 days in the hospital I passed the stone and was released (this was on a Monday) but before I was released I explained that the pain that I had been experiencing for the last 14 or so years was still there. The hospitalist that was in charge of my hospital care ordered a HIDA Scan for the next day thinking that maybe my gallbladder was bad. Needless to say I had surgery that Friday to have my gallbladder removed. According to the surgeon my gallbladder had been inflamed to the point that it basically killed all of the tissue. But no explanation as to why something like this may happen. The doctors said after a month or so you will feel like a new person. No more pain, constipation or vomiting. I was so excited! After 2 months of severe diarrhea, pain, nausea and vomiting I was back to square one. Right side pain, constipation, vomiting and nausea. By this time I had lost 10lbs and found a new PCP. I should also explain that they kidney stone caused my right kidney to become inflamed just adding to the agony. In May I had several visits to my PCP and now I was also seeing a Urologist. Ultrasounds were done along with blood work to check the condition of my kidneys. Everything came back fine. I need to add that during this time the doctors thought it was all kidney related and I was put on Toradol. While on Toradol my symptoms began to improve but I was told that Toradol can be very harmful so I was not allowed to take it for long. By the end of May the Urologist said that everything seemed fine kidney wise and there was nothing more for him to do. From all of my ER visits as well as my PCP and urologist I had an ample supply of pain medication that helped take the edge off so I could function to an extent. On June 6 after work I drove myself to the ER because the pain was unbearable. I was admitted with another large kidney stone and transferred to a bigger hospital for stone removal surgery. Surgery went fine. Went home on June 9 with a kidney stent. I thought I was dying! The pain was so bad. I removed the stent on June 11 hoping to get some relief (it was the kind with a string hanging). No relief and no explanation as to why my body was developing these stones. Oh and I forgot I had also passed another stone at home in between the first stone and the stone that required surgery. I was told however that due to the trauma from the first 2 stones that I will now require stone removal surgery EVERY time I get a stone. The pain, constipation, nausea and vomiting continued until I ended up back in the ER on July 30. Same tests were ran same results. Everything is fine. At that time my PCP decided that maybe I needed to see a G.I. doctor. I was missing work, I could hardly get out of bed. The pain medication didn't seem to be do anything anymore. There were many times that I was in tears due to the extent of the pain and frustration. My first G.I. appointment was on August 31. He mentioned Crohn's and Sphincter of Oddi Dysfunction but leaned more towards Crohn's because I have the skin rashes, kidney stones, mouth and nose sores as well as the pain in the upper right side. He put me on Levbid to see if it made any difference. On September 7 I had a colonoscopy and endoscopy. I have a small hiatal hernia and a few diverticula but everything else looked fine. Of course before the procedure I was on an all liquid diet for 48 hours as well as the cleanse (Moviprep). For about 4 or 5 days I felt fairly well. I did develop diarrhea and have been going back and forth between that and constipation ever since. The pain began to return and has increasingly gotten worse to where it is verging on unbearable again. I go tomorrow for a CT enteroclysis and I am hoping and praying for some kind of answers. My PCP said that he does not think that it is Crohn's but evidently by G.I. doctor does because he ordered the CT enteroclysis. Does any of this sound familiar to anyone? The Levbid does not seem to be helping. I also take Dexilant for the heartburn and constant burping and that seems to help.
Sorry for such a long post but I am desperate for answers!!!
I am a 39 year old mother of two and grandmother of one. In 1997 I began having a dull ache in my upper left quadrant. I ignored it, thinking it was no big deal. Within a few months I could not eat without having horrific pain. After a visit to my PCP and an ultrasound I had emergency surgery. My spleen weighed 9 lbs. That was in November of 1997. The doctors could not explain what happened to my spleen. I had not had any type of infection nor was there any trauma that could have caused such a large spleen. Tissue samples were sent away and thankfully came back benign. No other explanation was given. Within a year of the splenectomy I began having episodes of pain in my upper to mid right quadrant. I never had diarrhea but did develop constipation. These episodes would last anywhere from a few days to a few months. Some were more severe than others. During the severe attacks I would make a visit to my PCP (a couple occasions I ended up in the ER) and they would run some blood tests. A few times they did perform an ultrasound. All test results came back fine but I lost 15 lbs. My PCP convinced my that there was nothing wrong and I basically gave up. I lived with these attacks for years until they increasingly became worse. About 3 years ago I ended up back in the ER. Same thing blood work, ultrasound looked fine. They did perform x-rays and said that I may have a small kidney stone. I ended up back at home with pain medication. I missed an entire week of work because I was so sick. I had no appetite because of the pain therefore I wasn't eating. After about a week the pain became bearable (without pain meds) and I returned to work and continued living with the attacks. I have to add that I have a very high pain tolerance or so I have been told. I had both of my children natural and lived with horrific pain of my enlarged spleen among other painful injuries. I hate taking pain medication so I have to be in complete pain and agony before I will take anything.
Ok to speed things up a bit....the stress in my life as multiplied by 100 in the last 18 months for many reasons. The attacked seemed to get more frequent and intense until I could no longer function. In March of this year I ended up in the ER again with severe pain on my right side and vomiting. After a CT scan I was admitted to the hospital with a rather large kidney stone. After 3 days in the hospital I passed the stone and was released (this was on a Monday) but before I was released I explained that the pain that I had been experiencing for the last 14 or so years was still there. The hospitalist that was in charge of my hospital care ordered a HIDA Scan for the next day thinking that maybe my gallbladder was bad. Needless to say I had surgery that Friday to have my gallbladder removed. According to the surgeon my gallbladder had been inflamed to the point that it basically killed all of the tissue. But no explanation as to why something like this may happen. The doctors said after a month or so you will feel like a new person. No more pain, constipation or vomiting. I was so excited! After 2 months of severe diarrhea, pain, nausea and vomiting I was back to square one. Right side pain, constipation, vomiting and nausea. By this time I had lost 10lbs and found a new PCP. I should also explain that they kidney stone caused my right kidney to become inflamed just adding to the agony. In May I had several visits to my PCP and now I was also seeing a Urologist. Ultrasounds were done along with blood work to check the condition of my kidneys. Everything came back fine. I need to add that during this time the doctors thought it was all kidney related and I was put on Toradol. While on Toradol my symptoms began to improve but I was told that Toradol can be very harmful so I was not allowed to take it for long. By the end of May the Urologist said that everything seemed fine kidney wise and there was nothing more for him to do. From all of my ER visits as well as my PCP and urologist I had an ample supply of pain medication that helped take the edge off so I could function to an extent. On June 6 after work I drove myself to the ER because the pain was unbearable. I was admitted with another large kidney stone and transferred to a bigger hospital for stone removal surgery. Surgery went fine. Went home on June 9 with a kidney stent. I thought I was dying! The pain was so bad. I removed the stent on June 11 hoping to get some relief (it was the kind with a string hanging). No relief and no explanation as to why my body was developing these stones. Oh and I forgot I had also passed another stone at home in between the first stone and the stone that required surgery. I was told however that due to the trauma from the first 2 stones that I will now require stone removal surgery EVERY time I get a stone. The pain, constipation, nausea and vomiting continued until I ended up back in the ER on July 30. Same tests were ran same results. Everything is fine. At that time my PCP decided that maybe I needed to see a G.I. doctor. I was missing work, I could hardly get out of bed. The pain medication didn't seem to be do anything anymore. There were many times that I was in tears due to the extent of the pain and frustration. My first G.I. appointment was on August 31. He mentioned Crohn's and Sphincter of Oddi Dysfunction but leaned more towards Crohn's because I have the skin rashes, kidney stones, mouth and nose sores as well as the pain in the upper right side. He put me on Levbid to see if it made any difference. On September 7 I had a colonoscopy and endoscopy. I have a small hiatal hernia and a few diverticula but everything else looked fine. Of course before the procedure I was on an all liquid diet for 48 hours as well as the cleanse (Moviprep). For about 4 or 5 days I felt fairly well. I did develop diarrhea and have been going back and forth between that and constipation ever since. The pain began to return and has increasingly gotten worse to where it is verging on unbearable again. I go tomorrow for a CT enteroclysis and I am hoping and praying for some kind of answers. My PCP said that he does not think that it is Crohn's but evidently by G.I. doctor does because he ordered the CT enteroclysis. Does any of this sound familiar to anyone? The Levbid does not seem to be helping. I also take Dexilant for the heartburn and constant burping and that seems to help.
Sorry for such a long post but I am desperate for answers!!!
