SOD Failure...What now?

[Teerex]

I am a 29 year old female and I have been sick for the past two years. It took doctors about a year to diagnose my gallbladder as having "diminished capacity". It had sludge but no stones. When they took it out, the severe pain I had subsided shortly but came back quickly. I spent another year trying medecines and having tests done. Finally I had an ERCP done and had a positive manometry reading. The doctor said the pressure was not borderline dysfunctional but that it was incredibly high. He cut the valve and cleaned out "sludge" behind it and sent me home. I have since been in incredible pain. I have had an emergency cat scan and blood work after which my doctor said I did NOT have pancreatitis. Unfortunately I am still stuck with the pain and more. I can't find anything to make it better and my GI specialist has perscribed me more medecine and said that this is as good as things might get. REALLY??? What is my next step? I can't eat meat, seafood isn't too bad. No cheese, chocolate, caffeine, anything that is fried or has fat in it. There are days I am still eating just a soft diet to maintain. The attacks are terrible and the pain from my stomach being swollen is so uncomfortable. Activity makes things really bad. And after an attack I feel like somebody has sucked all the energy out of my body. I am just not sure what to do. Please help. I am tired of being sick and having to fight just to maintain my job and day to day stuff.

[CalGal]

I don't know if this will be of help, apparently more docs and hospitals are trying to figure out what to do about SOD. They're trying to do a better job of detecting and treating it. There's going ot be a new study called the EPISOD study that will be based at the Medical University of South Carolina. It will be headed by Dr. Peter Cotton. They're going to recruit patients at six centers in the U.S. starting around now, I think. From what I've found out the study has been approved and funded by the by the National Institutes of Health. The centers and principal investigators are; Medical University of South Carolina (Dr. Joe Romagnuolo), Johns Hopkins University (Dr. Sanjay Jagganath), Virginia Mason Clinic (Dr. Richard Kozarek), University of Alabama (Dr. Mel Wilcox), University of Minnesota (Dr. Martin Freeman), and University of Indiana (Dr. Evan Fogel).

If you're near one of these facilities, you may want to make a call.

[CalGal]

I've only got a few moments, but I'll be back later. In the meantime, please look at the post above (?) - acute pancreatits - not the post but the reply from shannon. Check them out - I don't know anything about the group, but if they've got a link to docs in your area, you should strongly think about contacting a doc that knows something about SOD. Yours knew enough to do manometry, thank God, but didn't know enough to stent you, which IMO should be almost automatic especially with sludge.

Lying back and feeling better may suggest that you're not experiencing problems with pancreatitis, but the fact that you're getting sensations around the belly button could mean otherwise. Problem is around the belly button is also the area of the sphincter, so it's hard to separate it.

The drug the doc has you on is decent, but the dosage is way low if what you're experiencing is SOD - and it really sounds like a continuation. And if you had a small elevation in liver enzymes, that's confirming it. Please find a new doc, or push the heck out of the one you've got to get more assistance.

[Teerex]

I forgot one other thing. It hurts to some degree most of the time, but eating definitely makes it worse. And there are times that I have experienced an intense pinching to the right of my belly button and pain on my lower right side. It doesn't correlate with any food or any of the attacks really, it just hurts there once in awhile, especially when my abdomen feels swollen and so bloated. All my cat scans including the one with contrast came back negative for appendicitis. My bloodwork has been coming back normal as well. My most recent had a slight elevation in my liver enzymes, but the doctor said it was negligable and nothing she was concerned about. Thanks again.

[Teerex]

Hi CalGal it is Teerex. I am currently taking Symax Duotab. One tablet twice daily. I didn't get a stent but he did find sludge in the common bile duct. He said he used a balloon to clean it out. The pain is just below my rib cage where it starts to curve in towards my sternum on the right. It is a sharp piercing pain that goes straight through to my back. When it gets going full swing it feels almost like a tightening belt around my back...almost like having a heart attack on the wrong side, on top of the sharp piercing pain. There are times that I have a sharp uncomfortable pain on my left side as well. It is a little different. It is like a hard cramping pain. Sometimes it just feels like it is a muscle spasm, but deeper. I often have "hot flashes" on the inside that correlates with this pain. It is localized in the spots that hurt on the right and sometimes on the left. It is like someone has set my insides on fire. When it passes I often end up really cold and exhausted. After these "attacks" (usually sometime the next day) I have really bad diarhea and it is often green. I have had trouble with extremes in my bowels. If I am constipated they are often strong smelling and dark. The pain gets better if I can stretch out. Laying down on the floor or in bed or sitting back in a recliner helps alleviate the pain and pressure. It doesn't take it away, but it helps it to lessen. I am not sure how well versed she is. She gave me the medecine and wants to do an EGD to double check my stomach lining. Before the ERCP I had some Biliary reflux in my stomach and it was tearing things up. My stomach doesn't really hurt though. I don't think that she will find much on the EGD. I had my gall bladder removed and that is it.. Tonsils out when I was a kid. The doctor diagnosed me with IBS as well. I am not taking any other medications, but I have tried Librax as well. The side effects of these meds are tough. It makes me really dry in my mouth and my throat. In fact I got multiple headaches that felt like my head was too dry. It also made me incredibly bloated and gassy too. THe librax knocks me out, and this Symax isn't as bad but it does make me sleepy. I would appreciate any ideas or suggestions. Sorry so long....thanks a million Cal Gal.

[CalGal]

What meds is the doc currently prescribing and at what dosage? Did they stent you after the sphincterotomy? Did he find sludge in the common bile duct. Where is the pain? Has your stool/fecal output changed and if so, how? Can you describe where the pain is localized and what it feels like? And as strange as it sounds, if you lean forward does it make the pain better or worse?

Is your doc someone well-versed in biliary issues?

Any other surgeries or underlying medical conditions? Are you taking any medications at all - any hormones, or?