Constant Mid Upper Abdominal Pain

[amc776]

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.

[Kevin Pho, MD]

Any antibiotic can cause GI side effects such as an upset stomach or stomach cramps.  It is also possible that anxiety can exacerbate the symptoms.  However, before attributing it to that, you may want to make sure that nothing more serious is going on.

I would consider an upper endoscopy if the discomfort continues.  This is a more comprehensive test than the upper GI series and can evaluate for inflammation of the upper digestive tract as well as ulcers.  A 24-hr pH study can also be considered if GERD is suspected, but not seen on the previous tests.  

I would also consider a test for H Pylori - this is a bacteria that is associated with ulcers and inflammation.  This can be done via a blood test and treated with antibiotics if positive.  

Followup with your personal physician is essential.

This answer is not intended as and does not substitute for medical advice - the information presented is for patient education only. Please see your personal physician for further evaluation of your individual case.

Thanks,
Kevin, M.D.

[amc776]

I did have the blood test for H.Pylori done which came back negative.  I'm fine all night long and when I wake up I think about it and the heaviness or pain occurs.  When I'm busy, I don't notice it as much.  Bending over at the computer though is probably one of the worst positions.  If it was antibiotics, would I still be having problems after all most 4 weeks.  Thanks, Adrienne

[krisg]

Have you been check for Sphincter of Oddi Dysfunction???
Kris

[amc776]

It doesn't sound like sphincter of oddi dysfunction just from the fact that I had my gallbladder removed and I had an ERCP performed which I imagine they would have caught.  I wonder about IBS which I know I have but my general doc told me that I wouldn't have constant pain.

[krisg]

I developed sphincter of oddi dysfunction after my gallbladder was removed (6 years ago, 1998)  In 2000, I was checked with ERCP w/manometry and the dr. only checked pressure in the bile duct and said I was fine.  2 years later in 2003, I was checked again and had to have a biliary sphincterotomy.(the sphincter muscle was clamped shut and had high pressure)  In march 2004, the pressure was checked in the pancreatic duct and was found to be high and therefor it needed to be cut. SOD usually shows up after the gallbladder is removed.

[amc776]

Thanks Kristen. I will talk to my doctors about that.

[tuff case]

Just to follo-up with what Kristin said. I also was diagnosed with the SOD type II.  You can read my entry.  But one of things my GI Dr. just told me on 4/8 was that they have found SOD secondry to IBS. So if you do have IBS and had the ERCP before it may not have shown anything previously.  Also they cut my SOD once and put a ballon through it and thought that it was find and the third time they measured the pressured and were actuslly surprised and had to cut it again along with the pancreatic valve.  Unfortunately for me the procedures have not provided any relief and I maybe looking at yet a forth.  There was only a 30% chance that this may have helped. So unfortunately for me I fell in the 70% range.  You may want to weigh your options.  My 4th ERCP is for somethings that I am feeling since that third one.  Again please read my entry (cancer/tuff case).  Go luck to you.

[amc776]

What are the specific symptoms of SOD?  I can't really find much on it.  My pain is more bothersome than painful most of the time.  It does not wake me up at all- worst when I am standing or sitting forward.  Lying down actually helps lately.  Any input?

[tuff case]

Well I can what my symptoms have been, I have URQ pain that radiates to the back (occasionally), nausea everyday ongoing for over a year now.  My GI Dr. asked me if the symptoms were as if I never had my gall bladder out and I would have to say yes.  So fatty foods can sometimes set it off (however this also is not all the time). I generally wake up feeling very nauseated, after I eat the nausea will go away for awhile but will come back later in the day.  As for the pain it used to come about an hour after I ate but now there is no timing it as it comes and goes at will (this also started before the procedures).  My pain at night was bad enough that most of time I could not even lay on my right side. (This has improved) I also have been diagonosed with GERD which is one fo the other things that MD-NYP is suggesting you be check for.  Being that you ususlly feel this at night see if eluvating your upper body about 6-7 inches helps. Unfortunately doing this with pillows does not help.  They suggest putting bricks under the legs of the head of the bed elevate.  One way I did find is using Couch cushions and sleeping in almost an sitting postion.  This may give you some relief while you are waiting for some test results.  If it is GERD I have heard that people feel abdominal pain instead of heartburn.  I elevate myelf more for the Acid refulx relief as it does not help the abdominal pain.  But what does not help one person may not mean it will not help another.  And if this does help Great.  Good luck to you!

[mymomissick]

About 10 months ago my mom had her gallbladder removed because the doctors thought that would relieve her pain. Well, her pain has gotten worse since. Now it's not just LRQ pain, but URQ also, accompanied by lots of nasea. A couple weeks ago she was so sick and dehydrated my dad, who is an internal medicine doctor, decided to take her to the hospital. (All the medicines he had been trying for her, as well has her gastrointestinal specialist, had not been working well up to that point.) She spent days in the hospital getting IV fluids and getting all kinds of tests. In short, all the tests are coming back normal. The specialists don't think it's cancer, but they also have no guess as to what it is, that is, besides SOD. That's the one thing that it might be looking like she has. On Tuesday she'll be going to San Francisco to get further tests for SOD dysfunction (ERCP? Manometry? something like that). So, Kristen, my question is mainly for you. You say you had SOD diagnosed back in 1998? What has been your experience? Did the treatment work and not cause you further complications? Are you mostly / entirely relieved from the pain you had felt? I'm so worried about my mom and REALLY want her to get better.

[tuff case]

Sorry to here about yout mom.  When I had my gall bladder out a few years back my biliary duct duct was enlarge from a normal about 3.5 to 7.3mm.  There was concern then that I may have release a gall stone that would have severe complications, which at that time I had not. When I was diagnosed with the SOD the duct size was also used as an indicator.  Not sure if you know from the ultrasound your mom had before she had her Gall bladder out or not what the size of the bile duct is but this may help.  Kristin and I have been emailing off line and if you go to string of comments under my section "cancer" you will find her email address.  I am sure she will not mind you emailing her off line.  Especially if you do not hear back from here.  Sorry if I can not offer you much more as at time have not had much relief but my symptoms may although daily for over a year are not severe as you mother.  Peace to you and your family!  If there is anything else I can help with let me know I have had 3 going on 4 ERCP's.

[krisg]

Hi, I actually was diagnosed one year ago with SOD.  From 1998 (gallbladder surgery) until 2-2003, I was told that I had IBS or severe acid reflux.  The doctors kept guessing.  I really thought it was SOD all along but it took alot of time to get a proper diagnoses.  Make sure your mom goes to a specialist.  By that I mean, a doctor who does ERCP's a couple of times a week.  It is very important that they are very knowledgeable in this area.  My SOD caused severe upper abdominal pain LUQ, and RUQ also my back hurt too.  Vomitting and dehydration were a part too.  Sometimes my liver enzymes would be elevated and sometimes not.  My first ERCP in 2000 was preformed by a so-called specialist.  He said I had IBS and nothing was wrong.  I knew better than to believe that so I pressed on.  I finally travelled out of state and saw another specialist who performed my first Biliary sphincterotomy. I was told I had high pressure in the bile duct and the sphincter muscle was not opening as it should be.  At that time I was not evaluated for the pancreatic duct pressure.  I got 5 months relief from that first procedure.  I started to have attacks again so I searched for another specialist and I found an excellent dr. in Indiana.  He performed the pressure measurement on the pancreatic duct and looked for signs of chronic pancreatitis.  He also checked and found out that I have celiac disease too.  The pressure was very high in the pancreatic duct so I had a sphincterotomy on that duct and he also enlarged the previous biliary sphincterotomy I had one year prior.  The dr. also placed a temporary stent in the pancreatic duct to prevent post-ERCP pancreatitis.  I did get the pancreatitis but I was told that it was mild.  I only stayed for 3 days in the hospital.  It has been 3 weeks yesterday, since my procedure, and I am finally pain free.  I can only speak from experience and say that it was a rough road to recovery.  I don't know if this procedure will "cure" all my pain in the future.  Only time will tell.  If you have any other questions feel free to e-mail me at ***@****.  Please put ERCP in the subject line or I might delete the message.  I hope this upcoming ERCP will be the answer to your mom's pain.  Lots of people get instant relief from sphincterotomies and never have pain again in their life.  Others take longer to recover from the procedure itself and can get months or years of pain relief.  Tell your mom Good Luck!!

[krisg]

Hi, looks like we posted at the same time !!!! LOL

[mymomissick]

Thanks for your response Tuff Case. I see Kristen replied too and I'll be sending her an email to the address she provided. I again thank you for your response, and I wish the best. If I think of any more questions that maybe you can answer, I'll post more messages here.

Sincerely, Adam (mymomissick)

[smo]

Hi, Bingo to the first post. I have the carbon copy of his problem (AS1723)for the past 3 years and it doesnt happen all nights. Its like an gas attack. I have noticed that during anxiety & excessive thinking dippressive things this attacks gets up & blows. I have givenup smoking & drink very less & in less quantity. tried yoga it also helps. Well I have tried some home herbal treatment (it's fully uptp you to do it or not) & it has helped but I repeat sysmptom have not gone fully.
1) eat early (avoid spicy foods & junk food)
2) Play some soft soothing music before sleeping
3). close your eyes & pray god softly in your mind & relax. It will bring in sleep.
4) If the attack cums in night goto toilet sit there for a while. It helps.
5) if you have any asian vegitable shop nearby bring Lauki called as - White Gourd (its light green in color & white inside). Wash it & without peeling in crush it in juicer & have 1/2 glass of fresh juice. Drink it in morning. will help a lot in controling liver function - colestrol - acidity - digesion - lowering sugar. BUT its very tasteless so one can add a bit Honey or just drink it in a go.

[tuff case]

Adam, just wondering how your mom is doing. TC

[mymomissick]

She went to a specialist in San Francisco who didn't think SOD was the cause of her pain. Why he doesn't think so, I'm not sure, but he doesn't. He thinks her problem is a general motility problem, and prescribed a rare medication. Well, for the first few days she thought that it could be working, but she just stopped taking it because it was giving her spasms and, well, it ultimately didn't work. She may go back to a drug called Regalin (sp?) which had helped somewhat in the past. The doctor in SF said that despite the information we've seen on the internet about the complications of ERCP and manometry being 10 - 20%, or something in that order, he think it's actually much higher. He says there is above a 50% chance that she would end up with pancreatitus (pancreatitis) if he did the procedures. He says if that happened, she would curse him for doing the procedure and she would wish she had her current pain instead. And, in addition to that, there is no garuntee the ERCP would relieve pain in the long run.
      So my parents, who are very good, honest, loving, hard working people all their lives, are quite down these days. To see this happening is making me so sad. Western medicine is UNABLE to diagnos and treat whatever it is that is causing her this severe, life altering abdominal pain (and often nasea too).
     At the end of our ropes, not knowing what else to do. She is very much against the ERCP and manometry for the complications they can cause, but she also can't go on living how she is living now. It's all in all just a messed up, depressing situation.
      Thanks for asking. How are you doing? And where's Kristen, and how's she doing?


Adam

[tuff case]

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

[mymomissick]

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

[krisg]

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

[mymomissick]

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.

[krisg]

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 !!

[tuff case]

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

[mymomissick]

Sorry about my near frantic rant.

Wow, TC, that's a lot of information. I'll read it slow a couple times to get it all.

Yes, you're right Kristen, there must be people out there who got these procedures for similar reasons and ended up just fine. They just don't come in here to post messages about it.

If the regalin doesn't continue to help we'll convince her to take the next step.

You all are wonderful.

Never stop posting.


Love, Adam

[tuff case]

Adam,

yeah I know I gave you a lot of info but I thought maybe there might be something that you could take away from my experience to help with your mom.  From what I gather from your last message is that the regalin is helping your mom currently?  If so that is great news.  Please let me know how thing continue with your mom. LOL TC

[amc776]

Has anyone ever heard of a stomach muscle spasm?  Had the endoscopy done 2 weeks ago- doc said that I had highly acidic stomach and there was some bile in there too.  Meds are not helping and now wondering if it is a spasm.  Anyone experienced this?  Thanks, Adrienne

[mymomissick]

Kristen and TC,

   My mom is laying in bed saying things like, "this can't be happening." She is not cheery and perserverant in these tough times like you two. How do you do it? How do you remain so positive and constantly willing to go get the next procedure? She is losing her will. She is so scared of more procedures. Procedures like manometry that can give her pancreatitis simply during the process of TESTING for SOD, not even in treating it. She is overwhelmed, disillusioned, and depressed. She talks about how no doctor has stuck with her. They all do their own particular job, rule out this, or rule out that, then they throw their hands up in the air. She is confused. She thought maybe some days Regalin was working, now she's not sure. She stopped all medications, and today is having one of the worst days ever. I told her that Kristen has had 4 ERCPS and is still motivated to fight on. She corrected me and said, "no, Kristen has had 5 ERCPs." (I have been forwarding much of Kristen's emails and postings to my mom. my mom doesnt go in to the forum beyond the one time I told her to.) She added, "I read what Kristen writes and it just sounds like her life is hell." She's depressed, and can't figure out how you have the will to go on the way you do.

My mom has a question, it is: what IS the pain associated with SOD? Is it a spasm? How long does it last? Does it come and go, or is it constant? She has spasms and nasea. Lately there has RARELY been a day that she says "Im feeling better today." This problem is NOT going away, as much as she, and our whole family, would like it to.

How do you cope?

[krisg]

Adam,
When I first got these attacks they started at night.  It felt like I was having a heart attack.  The pain was mid epigastric region and was a tightening feeling where I couldn't talk and could barely breathe and sometimes I would vomit and get relief for a few minutes. Then the pain would come back full force.  I would sweat profusely and all I could do was sick there and try to get through it. The pain was mid-epigastric,and RUQ too.  These attacks would last for 4-5 hours, then stop. I would feel sick for 2-3 days after. I tried Levsin and it worked for me for 2 years.  I currently use Donnatal and Elavil (at bedtime), and Prevacid in the am.  This current regimen works for me to some extent.  My first reason to push on was because I was determined to find out what was going on with my insides, besides the diagnoses of IBS (from some GI).  I knew he was wrong. When I found out that my bile duct was not opening I was relieved that I finally found out what the heck was happening.  My pain has shifted over the years, but I still get the occasional bad attack and take demerol for it.  That is what they give you in the ER anyway so my PC gave it to me.  MY horrific attacks returned last year and I had to look for another doc and unfortunely had to have another ERCP to check out the pancreatic duct.  I was relieved again that my pressure was "off the charts" and I had found out what was still going on.  I guess my main reason for continuing on seeing doctors is because I finally have the proof that my pain was REAL and PAINFUL and now I have documentation.  Tell your mom, I am not in horrific pain everyday.  I have bad days when I don't feel well and some days that I have to take pain meds.  I also have really good days (like today) and I can carry on with my NORMAL life. I believe that once you find a really GOOD doctor that believes in you and takes your pain seriously and is willing to work with you to try to get it under control, then You're in a good space.  For me , I'm glad I went in March to have the ERCP because I found out that 2 more things were wrong within my digestive track.  One of which could lead to cancer if not treated (celiac disease).  So for me , as much as I hate going to the doctors, I do go when I feel it is necessary.   It's ok for your mom to be afraid, it's natural.  She'll know when the time is right to go to another doctor or get further tests or whatever.  Hang in there and just keep telling your mom you will be there for her and help her when she doesn't feel well.  That is one of the best things you could do for her.  Believe me, she will appreciate it very much.  Keep us posted on your mom.  Hope she finds comfort soon.  Take care.  
Kristin

[krisg]

Forgot to ask, where is the pain located with your mom?  Is it constant (like all day long) or does it happen suddenly.  SOD usually happens spur-of-the-moment. Is her pain RUQ or LUQ or mid-epigastric region?  Does the pain go into her back (shoulder blade area)?  Is the pain lower abdominal?

[mymomissick]

Her pain is constant, not spur of the moment. She rarely has a day you could even rometely call a good day. Maybe some days are better than others, but no day is good. Her quality of life is horrible. She wants to live her regular life and go to work and take long walks, but she can't really do it. On her best day she can walk a little and make it through a couple clients at work. It's upper right quadrant pain. Today she was saying the spasms were more intense than ever, like they were under her rib cage.

Right now we're determined there is a motility test that she can have done, and it carries no risk. But we've determined that the reason my mom is scared is not for this test, but for what the results could lead to. The results would either be inconclusive and make her emotional pain all the worse than ever, or it can lead to a recommendation for a major surgery, to remove some part of her intestines or something. This is what the specialist in SF thinks is going on, a motility problem in the intestine, not SOD. My dad, again, an internist, agrees with this. My mom is scared of a major surgery. She thinks she'll die in the surgery. She's always been thin and trim and fit, but now she's skinnier than ever. Her will is low. Her intense pyschological state about thinking she will die, could actually transend into a physical reality, and it could be some sort of self fulfilling prophecy, and then SHE COULD ACTUALLY DIE. In other words, to have the surgery, she would need, I believe, pyschological help, therapy, what have you, to prepare for it, to get her will up for it so she would survive it. My poor parents are at their wits end with this.

Thanks for this dialogue,

Adam

[tuff case]

Adam,
I am so sorry to hear that your mom is not doing well.  Having a Dr. that sticks with you and believes that there is something wrong and works with you to resolve the issue really helps to maintain a positive attitude.  I have three only 2 right now are convinced that the nausea is IBS, however I am working on convincing them otherwise.  My PCP that changed my medication to the Reglan has really helped me maintain a posistive attitude lately.  As for the reglan after my first day without nausea after 1 year and  5 months I was literally in tears I was so happy.  However since I stopped taking an Anti-depressent that I was on for the IBS I have found that I have good days and bad days.  Taking an Anti-depressent with the reglan is a recommended treatment for my motility issues.  The Dr. however is took me off the anti-depressent because of side effects I was having to the Anti-depressent.  However I have since found out that the other nerve medication (for dizzy spells) I was taking (topamax) was contraidicated to take with the anti-depressent so they may start me back on that next week, we will see.  I also do still have pain.  My original pain was URQ to the point that I times I could not lay on my right side.  My pain since the 2nd ERCP is LUQ under my rib cage to my back.  In fact it has been worse also since I now stopped the nerve medication and the anti-depressent.  Last night for instance I could not lay on my left side.  
I do not know if a combination of the 2 drugs might help your mom but if she is upset it may help in more ways than one.  Have her check with her GI.  The theory behind the anti-depressent is that since the digestive system is a 2nd nervous system, when you are depressed, stressed etc you digestive system is effected. Mine is effected because of my other nerve condition.
Which motility test is your mom considering? Please keep us posted on your mom. LOL TC

[tuff case]

Have not heard of stomach muscle spasms? Is this something new you are experiencing since the endscopy or was it a diagnosis from your endscopy?  If it is something new what exactly are you experiencing? Pain where? how long? what meds were you taking? take care TC

[krisg]

just thought I'd let you all know that "spasm of the gut" was one of my many diagnoses that a "not so good" doctor told me long ago.  It also goes along with the "IBS" diagnoses.  If I had just settled for those diagnoses 4 years ago, I would still be fighting the "unknown" and going out of my mind with pain.

[mymomissick]

TC I find it a tad odd that after a sentence like "keep us posted on your mom" you put "LOL" which stands for "laughs out loud." I don't know, just seems out of place, or something, though I know you have only good intentions. so I know you don't put it there DELIBERATELY to seem out of place, therefore Im just letting you know, it seems a tad out of place, just sorta FYI. I mean, the status of my mom isnt something I feel too "LOL" about, you know?

   Motility tests? Im not sure. Ill ask my dad. It something that tracks her digestive system, though she already had something like this, this one will be more detailed and specialized, done in the big city, not here in our town. I know it's a non-risk procedure. I forget what it's called, I'll try to find out and let you know.

   Yeah depression ABOUT her pain CERTAINLY ads to the pain itself. Im sure of that. And my mom is certainly depressed. She is scared every night when she goes to bed that she'll wake up in the middle of the night extremely sick. Her fear is adding to whatever gut problems she's having. I showed my dad your writing, TC, because most of the medical stuff is over my head. He said with the whole diabetes situation, you and my mom are in pretty different categories. Oh yeah, about low fat and low fiber, yeah, my mom has been doing that. She always ate EXTREMELY low fat and high fiber most her life, but now she's cut out most of the fiber. Im here in their house today, 11:36 am CA time, and she's not here. That means she got up this morning and went to work. That's a good thing. Hope she's feelin better, Im going to go by their office now and check. I'll check the forum again tonight.

  Kristen, how you feeling?


  ADam

[tuff case]

Adam,

I guess it depends on where you are raise for the LOL.  Here it could either mean "Lots of Luck" or "Lots of Love".  Never heard of your expression before and definitely not my intention to laugh because I know this is definitely not a laughing matter.  Also about the diabetes I know we are different in that regard.  They do prescribe the Anti-depressent to those that do not have the Debiates but for things like IBS although I am not saying this is what she has because it does not sound like it at all.  It was just a thought because I believe it may have been helping me a little more than the reglan alone.  You just never know what might help sometimes. Wishing you and your family lots of luck and love!! TC

[mymomissick]

OH, sorry, I've only ever heard LOL means laughs out loud. Now that I see what you meant, sorry about that.

Ill ask my dad about the anti-depressant thing.

Take care,

Adam

[tuff case]

Just thougth I would let you know that I saw one of my 2 GI's on Thursday last week and discussed with him my concern about the Reglan and what he explained to me was that within taking the regaln n the first week you can develop side effects including tremors. As for your body becoming used to the drug not and that he has people on reglan for years.  Although he has not backed off his IBS diagnosis and since the reglan is working (although some days I still get the nausea) he is now convinced that an anti-depressent will not work in my situation because of all the other nerve "things" I have going on.  Anyway just thought I would pass this information along.  Take Care TC

[mymomissick]

thanks for the update.

my mom tried anti-depressants, didn't work.

she's scheduled to see a local surgeon, the same one who removed her gallbladder, to discuss the potential findings from the motility study, ie: major intestinal surgery to remove a faulty part of her intestines.

that's where we're at. she's not on Regilan anymore. I dont think she's on anything regular right now, just at need basis. Ill call now and ask how she is today.


Adam

[tuff case]

Last week I was told by my GI that he now feels that the anti depressent will not help with my nausea. On Monday this week I was told by and Endocrinologists that if he were in my shoes he would go to one of 2 places MAYO clinic in MN or to see a Dr. Drachman out of the Harvard.  He feels the nausea is related to a vestibular problem. He has written Chapters for the MAYO clinic text on Autonomic Nueropathy in '99.  He did not feel that is what I have, however he did say he would feel bad if they came back and said that was the cause.  He was also surprised the reglan was working for me.  He made this evaulation only from looking at my test results no exam.  Wed I went to see my other GI for follow-up regarding the abdominal pain and pressure I have been feeling since the ERCP in 2/04 and he basically told me he does not think that there is anything they can do for my abdonimal pain and to come back and see him in 8 weeks.  I then saw my PCP yesterday and explained all this to him, and we talked mainly about the possiblity of there being scar tissue in the pancreatic duct and how long that might take to heal.  He said that the GI probably wants to wait another 8 weeks because then it would 6 months since I had the ERCP and that if anything was going to happen (healing) it would be done by then.  He referred me to Mayo Clinic in 8/03 however I was pu on a waiting list for 2 1/2 years at the time.  He is now going to try and refer me again only this time he is making a personal phone call.  I figure if he really thought this was IBS he would not be making this phone call.  We will see what happens.  Have a Good Holiday, take care, TC

[mymomissick]

Thanks for the update. I hope you find out more about what is actually going on. Sounds like you're on that ultimate path.

My mom is having a few better days right now, on no medications. She and my dad spoke with a surgeon about a possible future operation. The surgeon said her colon could be removed. She (the surgeon) said the body can adjust to having just one colon (we have two naturally). But it's not a sure thing. It could be a complete cure to her pain, but it might not work. Right now my mom is trying to will herself better naturally. She's inspired by her past few days, and thinks she can continue getting better. (Does anyone with these sorts of symptoms of just get better naturally????) But she acknowledges the possibility of moving forward with that surgery at University of California San Francisco Medical School by the top surgeon in the area.

Have you ever heard of anything like this, that is, the colon removal thing?


Adam

KRISTIN:

Whats up? how are you!!?