I have SOD- I have tried Demerol and Percocet neither have even touched the pain. Either to make it worse or better. I have only heard from people here on this forum say you can't take them. My Dr has never told me that. I was told pain meds won't help with this type of pain.
I had a sphincterotomy done. I no longer have the pain, and require no medication.
Oh my God, I am at work having the worst attacks and can't take anything for it, and antispasmotics do nothing. (Could it be sludge in the duct?) Ouchhhhhhhhhhhh. It has been going on all afternoon. Oh, and drinking fluids worsens the pain.
Yesterday I took Aspirin and it seemed to help ease the inflammation somewhat but today, I am paying for it.
I can't believe this is happening. My back is killing me from the pain and the front feels like a charlie horse.
My doctor is on vacation. My next appt isn't until August---what can I do?
So scared to have that ERCP after they told me that one could die from the pancreatitis attack.
Not very reassuring.
The only test to diagnose SOD is the ERCP with menometry. It has to have the menometry in order to diagnose. Not many Drs will do this test. It has a very high rate for pancreatitis. What SOD is - is high pressure in the bile duct. Due to the Sphincter being too tight and not opening enough to let the bile out. Thats why more people who have it develope a non functioning gallbladder. The bile backs up into the gallbladder and becomes sludge. Once the gallbladder is removed or stops functioning enough the SOD pain becomes quite severe. If your interested I had mine done at the Borland groover Clinic in Jacksonville Fl. They are concidered one of the best. Look at their website. They have a clickable torso you click and find SOD along with the gallbladder information. borland-groover.com
I have tried Levsin and Donnatal with no relief. Most people with SOD do not respond to these treatments.
Taylee, I'm sorry you are going through all that pain. I remember it so well. It is like being in Hell. I don't know if it will help you, but when I had my pain I found it was when my stomach was empty. I found if I had something to eat it would calm down. Then around the time I had my period it would get so bad eating would just increase the pain. Even Coke would ease it for a little while.
I get a slight headache that goes away. I take Nitroquick 0.4 only when the pain gets bad. I can take up to 3 ea. 5 min. apart. So far, I have only had to take 2 then the pain gets better. I also find that if I walk around or stretch it helps.
It definitely helps if I walk around and stretch. Learning new things everday!
But I envy Lor in a way, she had the courage to go through with the ercp and sphincterotomy and feels better and has no pain.
That is my goal. After I get over being so scared.
Lor, that does make sense about the gallbladder function being disrupted. Mine wasn't slowing down but speeding up and going crazy causing constant bouts of cholecystitis.( Chronic inflammation and scar tissue.)
I can't believe that the SOD dysfunction is so rampant and Dr.'s are actually reluctant to do the ERCP. Mine put me on Bentyl (dicylclomine) to no avail. I think sometimes the more I eat the less it hurts because it interupts the motor mechanism that causes it.
Greg, nitro isn't an option for me if it increases or causes headaches because I already have severe migraines that I have to take an ergotamine based drug for now.
Thanks for the info.
I haven't felt this good in so long. I still have problems with gas build up in the upper abdomen. I was told that will go away with time. Something to do with my intestines not being use to the bile. I'm suppose to be on a low fat diet, because I developed pancreatitis after the sphincterotomy. I have 2 kids always on the go either to swim practice or soccer. Stopping for a quick meal is faster, but not so good for me. I'm sure many will agree it is hard to pass up french fries. This should be a permanent fix, however I could develope scar tissue. That may have to be removed 5 years or so down the line. From what I understand that is done fairly easily.
My pain only got worse with time and was starting to effect my daily living. The risk of getting pancreatitis didn't bother me. I just wanted to end the pain. When you get pancreatitis from a procedure like the ERCP with menometry. It is caught so early. That it doesn't cause much damage. Yes it is painful, but knowing what I know now I would do it again - for sure. The best part is the pain meds worked for this pain. I just slept for 2 days - didn't eat for 3 and lost 10lbs.
I have Chronic Pancreatitis and SOD. I can tell you, for my experience, that morphine helps a great deal...when given in the correct doses. I have a ERCP w/monometry done. I ended up with a pancreatic attack that put me in the hospital for 9 days. I wasn't ready to leave after that time, but had a small child at home and lied to leave the hospital. I found little relief after the monometry. And my pain had just increased with time. I found a specialist that did surgery on me 3 times. He did not use any dye during the surgery and I ended up not having a pancreatic attack the 2nd and 3rd time of surgery. The 1st time I spent 4 days in the hospital. Would I go through the ERCP again...I suppose. It seems there are many more of these in my future anyway. My point is for you to finda good doctor to help diagnose your problem. Also, some pain meds work for some people and don't work for others. It will be up to you to see what is best for you. But in the case of major pain, don't rule out morphine drips just because someone else can't do them. I am living proof that Morphine DOES work to reduce the amount of pain and discomfort with SOD and pancreatitis.
What is the difference with Spincter of Oddi or pancreatis? Could you tell me. I had pain last week that was miserable but no one ever talked about the sprincter. The Dr. said I have a pseudocyst and after reading these posts I think I have sludge in the ducts because I was on a fast l2years ago and after the fast I had to remove my gall bladder. I am trying to figure out how to resond to the correct people wihtout sounding like I keep telling my story, but after a week of pain I am reading everything. that was the longest week of my life. I am much better but I am scheduled for sugery in 3 weeks. Estelle
I don't have pancreatitis, or definitively have an SOD diagnosis.
Lor, or any of the others on here that have one or both.
So I can't really speak to that.
Seashoretracks: I just talked to my doctor today after waiting for a day and a half to tell him how I still wasn't feeling well and the medicine wasn't working. Well, he finally returned my call, and I was at work and took the call on my cell phone, and he just sat on the other end of the phone giving me one word answers, and I was so frustrated that I completely lost my whole train of thought on what I wanted to say.
I hate when a dr acts like that. Now I feel like he doesn't really want to help, Please don't say to go to another dr, this is the best hospital in the state, and I have already been to 5 other doctors. I give up.
I've been there with Dr's and I know how you feel. They don't understand that we are DESPERATE! I hope you can hang in there. I am still working with Drs. I went to the teaching Hospital and had an EGD and colonoscopy done. It was not bad at all. I was asleep through the whole thing, and woke up without any problems at all. In fact, didn't even feel sleepy throughout the day. My Dr. said she thought these tests would probably not reveal much, but she is just starting to look at me and I'm glad she's being thorough. The colonoscopy looked great, she got biopsies from the EGD, and we'll see. She did find a small bump in the bile duct where it goes into the small intestine, so she took a biopsy of it - has anyone had a bump like that before? Anyway the next test is an MRCP, and we may be heading toward an ERCP, we'll see. Even thought the ERCP makes me nervous, I feel better about it after doing the EGD. Also, I feel better about having it done at this teaching hospital.
I too am losing weight, keeping everything low fat, also low sugar, although I'm not sure about if that helps or not. I'm taking anti-spasmodics and demerol for pain.
One thing someone suggested to me was to write a letter to the Dr. with all my questions. He said he has gotten good responses from Dr's before by doing this. I have not tried it yet though.
I have been diagnosed with SOD from an ERCP test done in 1990. What triggers these horrific attacks is medication. Narcotic medication such as Codeine, Morphine, Vicodan and all their dervivatives. Sometimes, aspirin can trigger an attack. The first attack I had, I ended in the ER room. A shot of demerol took care of the pain. For some reason, Demerol will not trigger an SOD attack. Now, I am not sure if when one has an SOD attack, the pancreas becomes involved also as this pain can radiate to the mid upper abdomen. Labor pains were a breeze compared to these attacks. The longest an attack has lasted is 8 hours. One cannot talk..one cannot walk, all you can do is lay down in a fetal positon and lay very still until the pain subsides. I finally begged for Nitro 3 years ago. One nitro, 4mg. under the tongue can rid the pain in less than one minute...but I am sooooooo careful what meds i take so i do not have an attack. I also find that stress can bring on an attack and close that "lil" duct up.
I only have to take 1 Nitro quick to ease the pain. This is a 4mg. but I have used a 3mg. and they do just as well.
Now, with Nitro, they have to stay in their original dark bottle. They cannot be exposed to the daylight/sunlight. Also, when you use this medication, open the cap and then sprinkle one pill into the cap lid and then place it under your tongue, this way. You do not want to get any moisture onto the other remaining pills in the bottle as they will turn to powder. Also, once this bottle is opened, the shelf life decreases. I get 25 pills per bottle and have had to only open one bottle so far. They are fairly cheap to buy. I buy a package with 4 little bottles in it.
Also, yes, you can feel lightheaded and also get a headache after taking a nitro but this sure is better than these %^%&^$^%$& stomach attacks. Laying down after taking a pill can help, if this is possible.
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