Please help, I am desperate.

[lyndsay0504]

This all started in 2008. I had a really rough pregnancy, I only gained about 10 pounds during the whole 9 months because I could not keep food or liquids down at all until about the third trimester, then by then the baby was so big that I couldn't eat much anyway. Well 2 months after Madelyn was born (she was born beginning of Oct. 2008), I was still not feeling right. I would get horrible, excrutiating pain in my abdomen that I previously thought was heartburn. One night during a bad "attack" my mom told me to go to the ER and tell them to ultrasound my abdomen to check for gall stones. They did...the doctor came in and said "definite, DEFINITE gall stones." So, the next day, I had surgery to have my gall bladder taken out. And I thought that would be the end of it.

Well a few days after the surgery I called the surgeon's office because I was still in pain. They said it was probably from the air they pump into your abdomen during surgery, take some gas-x, and it will get better. Well...the pain just got worse. I didn't even make it to my post-op date a week later. I was back in the surgeon's office. I was jaundiced, and itching all over my entire body. My liver was not working. So he set me up to go to the hospital the next day to have a HIDA scan and an ultrasound and a CT scan to see what was going on in there. I couldn't take any pain pills after midnight because it would affect the scans. So. I made it to about 4am, and we ended up in the ER in the most excruciating pain I have ever felt.

They went ahead and scheduled my HIDA scan first. For this test I had to lay flat on my back for an hour and a half while they took pictures of my abdomen. They had given me a tiny bit of demerol when I got there but it wore off about halfway through this procedure. I was throwing up, crying, begging for pain meds and they wouldn't give me any. When the HIDA scan was finally over, I had to go to ultrasound. Still couldn't have any pain meds. I really truely thought I was going to pass out from the pain. That took about 20 minutes, then they sent me back to my room. STILL couldn't have any pain meds, AND they wanted me to drink the barium thing for my CT scan which was next. I got a little of it down, and promptly threw it back up. They decided to just take me for the scan anyway. That went really quickly and I finally got back to the room where they FINALLY gave me some more demerol. 20 minutes later I was still in pain. So they came back and gave me some dilauded. Normally dilauded knocks you out...I was in so much pain it barely did anything. So finally the Dr. comes in and says I'm getting no blood flow to my liver. So up to the 5th floor I go for surgery. I had an ERCP (basically a fancy scope thing) down my throat (I was asleep for that thank God), and while the dr was in there he found a 6mm stone stuck in a bile duct blocking everything off from my liver. He removed it. I went home the next day, and only had ONE pain pill that night. Previously I had gone through a whole bottle in about 4 days.

So a few months go by and I start to feel kind of weird. Well that turned out to be a hormone issue I believe, which is now resolved. So I'm thinking, great, I'm finally healthy, I can finally relax.

No.

Two weeks ago I began to have the same excrutiating pain in my abdomen, which felt like gall bladder attacks. I know that's not what it is considering my gallbladder is gone. So, one night my dear sweet neighbor came over and sat with Maddy so I could go to the ER. They drew blood, checked my pancreas, everything was normal, they sent me home with a referral to the GI doctor. The next day I called the GI clinic to make an appointment and they told me I could not be seen until July 1st. I explained that I was having severe attacks of pain and was referred from the ER. She still wouldn't fit me in. So, back to the ER the next day. They gave me demerol, zofran for nausea, and pepcid for any acid that might be causing me to be in pain. Drew more bloodwork, all came back normal. So they sent me for a CT scan. Normal, except that they found some cysts on my ovaries, but the doctor doesn't seem to think its anything to worry about. I told him I could not go home knowing that I would just be back in the ER the next day when I was in pain again. I NEEDED to see the GI doctor, whether they had to call her in to the ER or if he could get me an earlier appointment. He came back and said go to the clinic first thing in the morning.

So, we get up and get to the clinic for about 8. She examines me, looks at my chart and everything I've had done, and schedules me for an MRCP and an EGD. I had the MRCP on friday which was terrifying as I am claustrophobic but some Ativan got me through it. That night I went to my mom's house since my husband would be working and I needed help with the baby since I was on pain meds. Friday I felt pretty okay. Saturday we went out to eat for my brother's birthday, got home, and I was in severe pain again. This time it was so bad that I actually started throwing up. My EGD was scheduled for Tuesday, but I was in such bad pain that my mom called the on-call GI dr and she said to go in Mon to the office to at least get the results of the MRI. So tomorrow morning I will be in the clinic AGAIN. Tuesday I have my EGD scheduled for 9:30. I'm very frustrated and feeling sort of defeated at this point because the pain I am in is NOT normal but all my tests keep coming back as nothing is wrong. I don't know what to do. I am hoping and praying that the MRCP and EGD will hold some answers for me.


I copied and pasted the above from my blog but it sums up what I have been going through. I feel like everytime I go to the ER they blow me off. I don't just have a stomachache...I am in serious, severe pain! They give me something for pain, tell me to take antacids, and send me home. I feel like I should be demanding to be admitted until they find out what is wrong. I can't live like this! I have an 8 month old to take care of and the closest family (besides my husband) is an hour away! The vicodin is doing pretty much nothing anymore. Does anyone have any insight into what is wrong with me??? Tomorrow I go see the GI doctor again and if my MRCP results are normal I seriously don't know what to do from there. Other than like I said, demand that they admit me to the hospital and run tests until they find out what is wrong. Can you even DO that? I'm so frustrated and upset at every doctor I've seen in the past year.

I appreciate whoever takes the time to read this, I know its a little long. I just need any advice anyone can offer. Thank you.

[Matthew007]

^^^^^oh yeah forgot about that calgal is right make sure your doctor is testing for manometry...it tests the pressure - it's important to do, i've heard some people go undiagnosed without that..for SURE ask about "manometry" if they do think it's SOD.

thanks calgal that's important :S forgot about that wow..

[CalGal]

Here's a decent link to an explanation of SOD, which is what sounds like what may be going on: http://www.hopkins-gi.org/GDL_Disease.aspx?SS=&CurrentUDV=31&GDL_DC_ID=320F4EDD-0021-4952-83D7-8B0C67B47BFF&GDL_Disease_ID=7AB086B0-AB01-446E-B011-2E67CAFEF96D

The problem with SOD is that there are typically only a few docs and facilities that really know how to treat or deal with it. If your doc begins to suggest an ERCP, the first question is will the ERCP be done with manometry? If your doc says it isn't necessary, find a good specialist in SOD and talk to them. SOD can't be diagnosed without manometry.

If the condition is SOD narcotic-based pain meds aren't going to help. They raise the pressures in the duct and make things worse.

[Matthew007]

btw - you can go to the hospital but most likely the doctor on duty will send you home with pain pills and tell you to follow up with your GI (and you'll be left with a nice bill..) so yeah i've tried that thinking of "i'm going to the ER room and not leaving until i'm healed!!" but sadly it doesn't work :*(   not unless you're screaming in pain and your ct scan shows a stone (which it still might not be a stone..)

so yeah.. pain pills/nausea pills.. take it SUUPER easy..hopefully your MRCP shows some results.  

[Matthew007]

Ugh i'm so sorry you've been going through all this..especially now as a mother yikes :S No doubt you're having anxiety/stress/ issues..

Well honestly, I think you have sphincter of oddi - all your tests you've been having are basically geared towards that and that's what I think your doctors are thinking.  

Sometimes after a gallbladder goes south and they remove it, some patients develop shincter of oddi dysfunction *knocks on wood hasn't happened to me yet* but what it is (i'm sure you already know this..) but there is a muscle that contracts and releases right in the enterance of the small bowel (just past the stomach) so that food passing in the small bowel doesn't end up going ino the pancrease/liver bile duct.  Sometimes when a stone (you had one stuck) goes through that area it can cause damage to the duct...even surgery.. even a ERCP if the person perfoming it can accidentally cause sphincter of oddi pain...basically the muscle malfunctions or gets damaged and shuts tight closed causing back pressure on your pancrease and liver (and making you royally sick and in pain)

Usually doctors order a MRCP looking for a dialated (I know I spelled that wrong..) bile duct to suggest there is a problem with the sphincter of oddi muscle due to back pressure.  Usually what they do to fix it is two things if I remember.. they either place a stent in every month or so and try by using stents to relax and stretch the muscle ORRRRRrrrrr... they just cut the muscle and let the pancrease/liver drain freely.  there's actually 2 places the liver/pancrease drain.. but the main duct is where the sphincter of oddi is and where most drains...but that's another story..

Anyway so I highly suspect you have sphincter of oddi (google it) or you have another stone (still possible without a gallbladder) that is stuck in there giving you all kinds of problems.  If you ever have to do a ERCP for surgery make sure you go to someone who has TONS of experience doing it because you can really get sick...fact the majority of people who have a ERCP with surgery end up in the ER room really sick.

My guess is your MRCP (MRI) will show either a stone or dilated duct suggesting sphincter of oddi disfunction...if both are negative you've got something else going on but hopefully you have insurance..and hopefully you find an expert to do that ERCP if it comes to that.  That's something you don't let some rookie GI do.

Hope that helps :S  I could be totally wrong and completely off the mark but that's what I think you have... good luck! :S I'd eat easy to digest foods and avoid fatty/oily/heavy sugar foods for now.. your liver and pancrease are probably both a little sick and need time off.