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Constant Mid Upper Abdominal Pain
I am a 27 year old female who has been having pretty constant mid upper abdominal pain-moderate for 3 1/2 weeks now. It started when I was on Zithrmax for a sinus infection. It is usually worse at night. I have a history of hemangiomas(largest is under 3cm) and possibly 1 hepatic adnemoma which my doc says he is not concerned about. I had a CT scan done in October. My general doc sent me in for an UGI which came back normal and have had numerous blood work(pancreas, liver, CBC and h.pylori) all came back normal. When pain is at its worst, it sometimes travels to my back, below my shoulder blades. I also had my gallbladder out 2 years ago and had an ERCP the day before the surgery. The pain can sometimes run to either the left or right side under my ribs, but mostly its in the middle. It is located high in the upper abdominal region. I have also tried Protonix which has really done nothing. Like I said, the pain is usually worse at night but I do have "tenderness" almost always.In the last 3 1/2 weeks, I've had 2 days without any pain. When I lie down at night, I sometimes have an empty stomach feeling. I even have a hard time taking deep breathes although I do have a history of anxiety. I feel very bloated and distended all the time. I also tend to drink a lot of pop(not caffefine free) and I do smoke about 10 cigarettes a day. My general doc told me to make an appointment with an internalist which I am in search of. I have no fever or nausea and otherwise feel fine, only stressed. Could something be related to the antibiotics? Or is probably just a coincidence? Any ideas would be greatly appreciated. I have had 2 CT scans done in the last 2 years since they found the tumors on the liver ( found incidently from ultrasound on gallbladder). Showed no growth on hepatic adenoma and possible 1 cm growth on hemangioma but general doc had tests ordered and there was never a side to side comparison done. Liver doc thinks there may have not even been growth. I had just had a baby 4 months before having the 2nd CT scan and I know hormones can make them grow. Is there also a chance it could be anxiety related? I had moderate pain tonight, ate pizza which then made it worse, took 2 tums and then pain subsided somewhat but that is not always the case. There feels like there is always a heaviness as more so than pain during the day. I know I gave you a lot of info but I thought the more the better to explain to you. Any input would be greatly appreciated.
Adam,
It helpd to have a little more background on your mom's GI doc and I to agree that if they are trying the non-surgical method first then that is great and at least you know that if it does not work there are measures that can be taken to further treat your mom when she is ready and if it becomes necessary. As for yur questions about my pain relief, yes I have had abdominal pain relief since the ERCP in 2/04. I had URQ pain and nausea from 12/02. Although the procedure relieved the URQ pain it did not help the nausea. I now have relief from the nausea with assistance of Regalin before meals and then once at bedtime so I do not wake-up feeling nauseated. With my personal diagnosis and the one that my primary care has accepted and the one that convinced him to switch my medication around and put me on regalin is "Diabetic Autonomic Nueropathy" (DAN) because I am diabetic this diagnosis fits for me there is also "Autonomic Nueropathy causesd many other ways. This attacks many different areas of your "autonomic nervous system", which is anything you do not control. I say this only to say that a major part of this diagnosis is the digest system and its motility, something that you mentioned the GI stated he feels your mother maybe be suffering from. I had had a Gastric emptying study done 04/03 for the gastroparesis which is the slowing of the stomachs digestion or motility. What I found out from the article on DAN is that you can have severe symptoms and yeat have a negative Emptying studying. I also found out that a part of the motility diagnosis is "pylorospasm or incoordinate gastric", this being the same symptoms as IBS however IBS is more stress induce which is what the GI's have been telling me is my condiditon but I have had a problem with only because of the stress part. With this diagnosis it is more incoordinated gastric because of nerve problems than stress. And the final motility issue is "duodenal motility" meaning that digestion slows in the duodenum (first section of the small intestine). The article I read states this, "Gastorduodenal manometry may be helpful in patients with symptoms but apparently normal emptying (negtive empyting study) because it can help identify pylorospasm or incoordinate gastric and duodenal motility." This test unfortunately is only found at major Universities or research settings. I myself have not had this test done as of right now the closest to me and I am in IL, is in Michigan and if my PCP is following the recommended treatment for the condition then I am not concerned about having the test done. I said all this to say that there are tests out there to determine motility issues. Also one of the recommendation that I did not get from my PCP or GI but in reading is to eat 4-6 small meals a day, and reduce fat content to less that 40g/day and also restrict fiber intake. this your mom can confirm with her GI, but I have found it to help also.
So to answer you question again yes the ERCP helped with the URQ pain, not the nausea. I have developed some additional symptoms since the 2nd ERCP for which we are still trying to come up with a diagnosis for either the GI's dianosis of IBS getting worse, there being scar tissue in the pancreatic duct caused by the stint, however highly unlikely because my stint was only in 2 days, and the third is chronic pancreatitis. I go back to see the Dr on 2/26 to see if I will need further tests or what there diagnosis is. They do not feel that my additional symptoms were caused by anything they did during thier procedure.
Sorry about jumping the gun about your mom's GI just did not have all facts. I would also say that if my GI's were not so quick to force the IBS diagnois no me with SOD being a result of IBS they may not have done the 2nd ERCP and maybe I would not have the additional symptoms. Btu hopfully they have learned from my case and the next time to not rush to fit the square peg in the round hole.
I hope your mom feels some relief with the regalin as I have. Please keep me updated. LOL TC
It helpd to have a little more background on your mom's GI doc and I to agree that if they are trying the non-surgical method first then that is great and at least you know that if it does not work there are measures that can be taken to further treat your mom when she is ready and if it becomes necessary. As for yur questions about my pain relief, yes I have had abdominal pain relief since the ERCP in 2/04. I had URQ pain and nausea from 12/02. Although the procedure relieved the URQ pain it did not help the nausea. I now have relief from the nausea with assistance of Regalin before meals and then once at bedtime so I do not wake-up feeling nauseated. With my personal diagnosis and the one that my primary care has accepted and the one that convinced him to switch my medication around and put me on regalin is "Diabetic Autonomic Nueropathy" (DAN) because I am diabetic this diagnosis fits for me there is also "Autonomic Nueropathy causesd many other ways. This attacks many different areas of your "autonomic nervous system", which is anything you do not control. I say this only to say that a major part of this diagnosis is the digest system and its motility, something that you mentioned the GI stated he feels your mother maybe be suffering from. I had had a Gastric emptying study done 04/03 for the gastroparesis which is the slowing of the stomachs digestion or motility. What I found out from the article on DAN is that you can have severe symptoms and yeat have a negative Emptying studying. I also found out that a part of the motility diagnosis is "pylorospasm or incoordinate gastric", this being the same symptoms as IBS however IBS is more stress induce which is what the GI's have been telling me is my condiditon but I have had a problem with only because of the stress part. With this diagnosis it is more incoordinated gastric because of nerve problems than stress. And the final motility issue is "duodenal motility" meaning that digestion slows in the duodenum (first section of the small intestine). The article I read states this, "Gastorduodenal manometry may be helpful in patients with symptoms but apparently normal emptying (negtive empyting study) because it can help identify pylorospasm or incoordinate gastric and duodenal motility." This test unfortunately is only found at major Universities or research settings. I myself have not had this test done as of right now the closest to me and I am in IL, is in Michigan and if my PCP is following the recommended treatment for the condition then I am not concerned about having the test done. I said all this to say that there are tests out there to determine motility issues. Also one of the recommendation that I did not get from my PCP or GI but in reading is to eat 4-6 small meals a day, and reduce fat content to less that 40g/day and also restrict fiber intake. this your mom can confirm with her GI, but I have found it to help also.
So to answer you question again yes the ERCP helped with the URQ pain, not the nausea. I have developed some additional symptoms since the 2nd ERCP for which we are still trying to come up with a diagnosis for either the GI's dianosis of IBS getting worse, there being scar tissue in the pancreatic duct caused by the stint, however highly unlikely because my stint was only in 2 days, and the third is chronic pancreatitis. I go back to see the Dr on 2/26 to see if I will need further tests or what there diagnosis is. They do not feel that my additional symptoms were caused by anything they did during thier procedure.
Sorry about jumping the gun about your mom's GI just did not have all facts. I would also say that if my GI's were not so quick to force the IBS diagnois no me with SOD being a result of IBS they may not have done the 2nd ERCP and maybe I would not have the additional symptoms. Btu hopfully they have learned from my case and the next time to not rush to fit the square peg in the round hole.
I hope your mom feels some relief with the regalin as I have. Please keep me updated. LOL TC
adam,
yes, I totally agree with you when you stated that your mom's gi doc wants to use all non-surgical means first to feel better. I went that route too, for a couple of years. I had exhausted all medications to try to make these attacks go away. Unfortunately medication was not working for me anymore and then I decided to have more invasive treatments. After the first surgery (sphincterotomy), I was pain free for a couple of months. Unfortunately again, the pain returned and I found out that the first GI doc should have tested both ducts for high pressure instead of just treating one. Most patients who have ongoing symptoms after a biliary sphincterotomy should be evaluated for pancreatic duct hypertension. My last ERCP, that is what they found. Yes, many people have ongoing symptoms after procedures, and many people get complete relief. The thing is, that the people who are completely pain free don't post on the medical websites because they are going about their "life", feeling great. It sure would be nice to hear from a bunch of people who had these types of procedures and have had complete relief of their symptoms. Now that would be some great reading !!
yes, I totally agree with you when you stated that your mom's gi doc wants to use all non-surgical means first to feel better. I went that route too, for a couple of years. I had exhausted all medications to try to make these attacks go away. Unfortunately medication was not working for me anymore and then I decided to have more invasive treatments. After the first surgery (sphincterotomy), I was pain free for a couple of months. Unfortunately again, the pain returned and I found out that the first GI doc should have tested both ducts for high pressure instead of just treating one. Most patients who have ongoing symptoms after a biliary sphincterotomy should be evaluated for pancreatic duct hypertension. My last ERCP, that is what they found. Yes, many people have ongoing symptoms after procedures, and many people get complete relief. The thing is, that the people who are completely pain free don't post on the medical websites because they are going about their "life", feeling great. It sure would be nice to hear from a bunch of people who had these types of procedures and have had complete relief of their symptoms. Now that would be some great reading !!
Hi Kristen and TC,
Im glad you had a couple good days. Just a couple? No I wasnt joking about the email list, it's extremely easy to do and there might be a few people who would like to be on it (like me).
I don't think the fact that the doctor recommended against the invasive procedure is a bad thing. A doctor makes a few thousand dollars to do a procedure like that. So there must be something there if the doctor is saying, "DONT pay me a few thousand dollars." This doctor is far more specialized than the local GI doctor my mom was seeing, who basically threw up his hands and said, "I dont know." This doctor simply said that he is not convinced the sphinter of oddi is the cause of her pain. He said he thinks she has a general motility problem. Knowing that she had been on Regalin and that it helped, he prescribed a rare, hard to get medication that he thought would work even better than Regalin. Well, it didn't, so she went back to Regalin. So he simply said that in his experience, he notes that OVER 50% of people who get the procedure end up with pancreatitis. He said despite all the data we've seen on the internet, this is the more true statistic that he's observed, and he is way into this field.
Now, to put the final hole in your guys' argument, he said that if she DOES chose this procedure, he will send her to the best of the best, at UCSF Medical School (one of the best in the nation). So he's not saying, "dont do this because Im not good at it," he is saying, "don't do this unless we've exhausted all other possibilities that I, in my years of practice, can think might exist. Then, should you chose the procedure, you will know the risks and you will go to one of the most highly qualified to do it."
THAT'S what the doctor is saying. So go easy on him.
If you are wondering why she hasn't gone back to see him again and/or ask to see the other specialist to schedule the procedure, that is a question only my MOM could answer. It's not the doctor's fault. It's my MOM who is very afraid of the procedure, whether it is a 50% chance of pancreatitis or a 20% chance. Also, she doesn't feel convinced that it will relieve her pain. She's not as perserverant as you guys. She just really wants to "deal" with it and try to make it along with small doses of Regalin. If that doesn't work, the family will probably end up convincing her to press on with the medical stuff, despite the risk.
But this particular doctor is innocent. My dad is a doctor and he said this doctor sat down with them and discussed everything for 20 minutes before and 20 minutes after she had the endoscopy done. He said he did it in a very NON rushed, and caring way. If my dad says that, IT'S TRUE. My dad is a great internal medicine doctor, beloved by sooooo many people in the community because he is a good, caring doctor. And he is not afraid to give his opinion about another doctor in town when he feels such doctors treat their practice like a business instead of like a care and healing service. So if he said this doctor was good, this doctor was good. Period. It's my MOM you'll hav eto convince to take the risk and get more invasive stuff. SHE'S the one who doesn't want to go to another doctor. It's not because she thinks this doctor is God and did everything that could possibly done. She is just AFRAID of what comes next. Don't you guys have tons of experience getting terribly ill and put in the hospital for days because you got pancreatitis? And weren't there times you went through that ONLY to NOT feel relief? THAT'S what my mom is worried about.
Im glad you had a couple good days. Just a couple? No I wasnt joking about the email list, it's extremely easy to do and there might be a few people who would like to be on it (like me).
I don't think the fact that the doctor recommended against the invasive procedure is a bad thing. A doctor makes a few thousand dollars to do a procedure like that. So there must be something there if the doctor is saying, "DONT pay me a few thousand dollars." This doctor is far more specialized than the local GI doctor my mom was seeing, who basically threw up his hands and said, "I dont know." This doctor simply said that he is not convinced the sphinter of oddi is the cause of her pain. He said he thinks she has a general motility problem. Knowing that she had been on Regalin and that it helped, he prescribed a rare, hard to get medication that he thought would work even better than Regalin. Well, it didn't, so she went back to Regalin. So he simply said that in his experience, he notes that OVER 50% of people who get the procedure end up with pancreatitis. He said despite all the data we've seen on the internet, this is the more true statistic that he's observed, and he is way into this field.
Now, to put the final hole in your guys' argument, he said that if she DOES chose this procedure, he will send her to the best of the best, at UCSF Medical School (one of the best in the nation). So he's not saying, "dont do this because Im not good at it," he is saying, "don't do this unless we've exhausted all other possibilities that I, in my years of practice, can think might exist. Then, should you chose the procedure, you will know the risks and you will go to one of the most highly qualified to do it."
THAT'S what the doctor is saying. So go easy on him.
If you are wondering why she hasn't gone back to see him again and/or ask to see the other specialist to schedule the procedure, that is a question only my MOM could answer. It's not the doctor's fault. It's my MOM who is very afraid of the procedure, whether it is a 50% chance of pancreatitis or a 20% chance. Also, she doesn't feel convinced that it will relieve her pain. She's not as perserverant as you guys. She just really wants to "deal" with it and try to make it along with small doses of Regalin. If that doesn't work, the family will probably end up convincing her to press on with the medical stuff, despite the risk.
But this particular doctor is innocent. My dad is a doctor and he said this doctor sat down with them and discussed everything for 20 minutes before and 20 minutes after she had the endoscopy done. He said he did it in a very NON rushed, and caring way. If my dad says that, IT'S TRUE. My dad is a great internal medicine doctor, beloved by sooooo many people in the community because he is a good, caring doctor. And he is not afraid to give his opinion about another doctor in town when he feels such doctors treat their practice like a business instead of like a care and healing service. So if he said this doctor was good, this doctor was good. Period. It's my MOM you'll hav eto convince to take the risk and get more invasive stuff. SHE'S the one who doesn't want to go to another doctor. It's not because she thinks this doctor is God and did everything that could possibly done. She is just AFRAID of what comes next. Don't you guys have tons of experience getting terribly ill and put in the hospital for days because you got pancreatitis? And weren't there times you went through that ONLY to NOT feel relief? THAT'S what my mom is worried about.
adam,
I thought you were joking about the e-mail list thing. I have had a couple of really good days and feel very energetic. I also hear that TC has been feeling better lately too. I hope your mom is feeling better and tell her to hang in there. I also have to agree with TC, and she should go to another doc.
Just my thought.
Kristin
I thought you were joking about the e-mail list thing. I have had a couple of really good days and feel very energetic. I also hear that TC has been feeling better lately too. I hope your mom is feeling better and tell her to hang in there. I also have to agree with TC, and she should go to another doc.
Just my thought.
Kristin
Thanks for your response, TC.
My mom had tried Reglan before, and stopped it because it was making her sleepy. She's back on it now, as of the past few days, and she says it has provided some relief. I emailed Kristen too and suggested she start an email list to update her status to everyone who is interested with one email. I hope you continue to feel relief. Im going to call my mom right now and ask if she is still feeling some relief.
Take care,
Adam
My mom had tried Reglan before, and stopped it because it was making her sleepy. She's back on it now, as of the past few days, and she says it has provided some relief. I emailed Kristen too and suggested she start an email list to update her status to everyone who is interested with one email. I hope you continue to feel relief. Im going to call my mom right now and ask if she is still feeling some relief.
Take care,
Adam
Sorry to hear that your mom is not doing well. Her Dr. does nto sound very confident in his skills or he does not have the equipment to do an adequate ERCP. My dr told me the was a 12-18% chance the first time I had an ERCP and I did get it but I pretty much expected it just because of how things went with me. I was int he hospital for 2 days my 1st one. The 2nd ERCP when they had to cut the pancreactic valve they input a stint to up drain the dye and prevent pancreatitis. My stint caused much pain and they removed it 2 days later however I know Kristin did not have hers removed. Since they did this I did not develop pancreatitis. Although I continued to suffer with daily nausea up until about 2 weeks ago when I went in an told my PCP what the problem is and he change my medication around, the ERCP did relieve the consent abdominal pain. However I do get a feeling in where the ribs come togther that makes me stop dead in my tracks which I did nto have prior to the 2nd ERCP. The GI's thoughts on this is a) scar tissue in the ducts from the stint but highly unlikely since the stint was only about 48 hours, b) I have developed chronic pancreatitis (this is my guess since bloodwork in April reflected my Amylase was up slightly without lipase which is an indicator) or c) my IBS (their diagnosis for which they were treating the nausea that never went away) is worse. If it is Chronic pancreatitis there are steps that can be taken to keep it from getting worse. I go back to see the Dr at the university on 5/26 he ran more blood work in addition to the bloodwork I have already mentioned. My diagnosis is "Diabetic Autonomic Nueropathy" part of this disgnosis is "incooridinate gastric" or IBS only IBS is more stress related when the attacks happen and mine is not contralled by stress. My PCP is switching the nerve medication (which I was taking for dizzy spells and tingling and numbness in hands and feet) I am on and the anti depressent I was on for the IBS and put me on reglan which has helped me. I found that if I eat a meal high in fat nausea and abdominal pain is bad and it comes back during my period. I have only been on the reglan for 2 weeks and I am gradually being taken off the other medication but reglan has definitely made a difference (except for the pain from the ERCP) in the nausea. From what I read about the reglan is that your system can become used tot eh medication and it may stop working so occausionally it maybe good to stop taking it for awhile but I would have your mom talk to her Dr. about that as I am still trying to get this verified with my GI Dr who is more fimiliar witht he medication. After having been nauseated for 1 year and 5 months every single day having some nausea free days over the last couple of weeks has been a great relief.
I just heard from Kristin last week she has had a couple of bad days again and is suppose to be seeing her gen doc this week for some bloodwork and script refills, hopefully she gets some relief soon. I am sure if you emailed her she will get back to you soon. I would email you off line but I can not post my email on-line. You can get it from Kristin if you like.
Please keep me posted on your mom. LOL TC
I just heard from Kristin last week she has had a couple of bad days again and is suppose to be seeing her gen doc this week for some bloodwork and script refills, hopefully she gets some relief soon. I am sure if you emailed her she will get back to you soon. I would email you off line but I can not post my email on-line. You can get it from Kristin if you like.
Please keep me posted on your mom. LOL TC
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