I'm a 51 year old female. Fall of '10 I developed classic gall bladder symptoms: RUQ pain, including pain in my right shoulder and shoulder blade, nausea, but no vomiting or diarrhea or cramping, no bloating and no feeling or fullness after eating,a total weight loss of 30 lbs, fatty food intolerance, but normal stools. I had an ultrasound, HIDA scan , CT scan of abdomen-all normal. I also had a blood test for celiac disease. I finally had a cholecystectomy in Jan. '11 in Portland, Oregon. My gall bladder showed no stones, just signs of chronic inflammation. Still had constant RUQ pain. Next procedure was an EUS which only showed some minor abnormalities in my pancreas, so they gave me some enzymes to try, but they did not help. My doctor sent me to Seattle to the Virginia Mason hospital. There I had an MRCP which showed an enlarged common bile duct, then had an ERCP with sphinctermanometry, which showed increased pressures in both the common bile duct and the pancreatic duct, so the doctor performed a sphincterotomy. It relieved my nausea enough to start eating a little more, but did not mitigate my RUQ pain.
We tried acupuncture for months, with no change. Then we tried visceral massage with an Osteopath. Once again, no change.
I am now on Fentanyl, Norco, Flexeril and Promethazine to control the pain and nausea. My gastroenterologists gave up on me and told me to go to a pain clinic.
I'm a normal, happily married mom of 6 kids, but this daily pain is ruining my life. I am not stressed out, and I am not doing this for attention. I have good friends, I am a member of a church and I have a good outlook on life. I know that my pain is real and at times is excruciating. I want to get off of all of these medications but I can't go for more than 6 hours without narcotics. I've been waiting for months to get into our local teaching university (OHSU), but they will only see me one time for a second opinion. My husband and I are so desperate that we are willing to fly to another state to get help.
CasparFrench, I assume you've been diagnosed with some form of SOD - sphincter of Oddi dysfunction? Is your gastro doc one who specializes in biliary issues? If not, have you consulted a GI doc that is? SOD can be very difficult to treat.
Several studies have shown that narcotic meds can unfortunately increase the pressures in the duct and result in more or continuing discomfort. Have you and your doc considered trying some anti-spasm meds or specific calcium channels blocker meds? For some they can be very helpful, although as with any medication they do have side-effects.
Concerning the diagnosis, I do not have a diagnosis of any kind. None of my 3 different gastro doc's ever offered an answer for my pain. They just told me to go to a pain clinic.
As for the narcotics, I know that they are supposed to increase the pressures, but for me, they have been life-saving. It has made me think that I do not even have biliary dyskinesia. For one thing, I have constant, crushing and burning pain in my RUQ-- not intermittent as would be expected with SOD. And the fact that narcotics are helpful would also seem to negate that possibility.
I have tried some of the anti-spasm med's, but not the calcium channel blockers. I'm so frustrated because my original gastro doctor doesn't want to treat me for my pain anymore. He just told me that I needed some anti-depressants because the pain was upsetting to me. I feel like he just turned his back on me because I wasn't an easy fix. I currently do not even have a gastro doctor. I'm being given my pain med's by a doctor who treats car accident patients. It's so ridiculous.
Thank you so much for taking the time to address my situation.
You sound like you are very well educated in the area. Several questions : 1) you said that your HIDA was normal. Was an ejection fraction calculated and was it abnormal and/or were your symptoms reproduced? 2) You said that the CBD was dilated on MRCP, we're any liver function tests and/or amylase ever noted to be elevated?
As you probably already know, there are three types of sphincter of Oddi dysfunction. Type I is when there are typical symptoms along with ductal dilatation and elevated liver/pancreatic functions. Usually manometry isn't done in this group as sphincterotomy is pretty much uniformly successful in solving the problem as it probably represents a stenosis of the papilla rather than true sphincter of Oddi dysfunction. Type II is when ther are typical symptoms and either ductal dilation or elevation of liver/pancreatic functn tests. This may well be the category that you fell into. Sphincterotomy would appear to correct about 50% of these patients. Type III is the presence of typical symptoms with neither ductal dilatation nor elevated LFT's. Only 10-15% of these patients respond to shincterotomy. Many of the patients that fail to have their symptoms resolve with spincterotomy have been shown to have hypersensitive duodenums. This is the stretch of intestine that the bile duct empties into. One study looked at a group of patients such as yourself and a group of symptom free patients and inflated balloons in their duodenums. The group of patients that had been type II or type III had pain reproduced at a much lower pressure than in normal controls. One thing that has been done with these patients has been to block the celiac plexus. This is a collects of nerves near the takeoff of the celiac trunk overlying the aorta in the upper abdomen. This has traditionally been done to block pain from pancreatic cancer but the same nerves are responsible for sensation of the duodenum.
This is highly specialized stuff that very few physicians practicing outside of a tertiary care center would be up on. I would hope that the docs at OHSU would be able to help.
Oh, by the way, the narcotic issue shouldn't apply to you as the narcotics lead to spasm of the sphincter of Oddi. Yours has been cut so one would not predict an elevation of pressure with narcotics.
My final comment is that you stated that the pressures were elevated in both biliary and pancreatic portions of the sphincter. Typically only the biliary portion is dealt with with an endoscopic sphincterotomy. Usually a surgical approach is taken for the combined form where the septum between the two is divided and a formal sphincteroplasty performed.
I am honored that you took the time to review my health information.
Regarding my blood work, all values have been normal except for a transient change in my pancreatic values post-sphincterotomy.
As for my manometry values, my doctor was not a good communicator, so I may not have recounted my information accurately. He was a good surgeon, though, because I did not have any issues with pancreatitis following the procedure. My stent stayed in place nicely for a few days and then passed out. I really appreciated this doctor's skill, but was shocked when he gave me no other explanations for my continuing pain and no other methods to control it.
I am relieved to hear about the possibility of the nerve block to the celiac plexus. I have done a lot of reading and had seen numerous articles about FAPS, and in particular, the type involving hypersensitivity of parts of the intestines. The articles that I had read were rather prejudiced in their opinions of those afflicted with that type of pain, and suggested it was mainly a "psychogenic" pain. They had the belief that many of the sufferers have been sexually abused in their childhoods, and this pain is just the residue of that trauma. They asserted that the patients needed counseling and reassurance, rather than medical treatment.
After surveying that diagnosis and those attitudes, I feared ever being diagnosed with FAPS. I figured it would mean I would never get any relief from this pain because I would be labeled whinny psych patient. Then I would be denied medication or any further medical procedures.
Your suggestion of the possibility of the nerve block makes sense and gives me hope. I've missed out on so much over the last 2 years. I want to return to my normal, happy, busy self.
Thank you again the gracious offering of your knowledge. You have given me hope and raised my spirits tremendously.
I failed to answer about the ejection fraction on my HIDA scan. I believe the doctor said it 40%, which he called "borderline normal." I don't know if it's meaningful to mention,or not, but the technician performing the scan said mine was the largest gall bladder she had ever seen. That seemed odd since I'm only 4'11" and weigh 115 lbs.
The CCK injection made me so nauseated that I was struggling not to vomit. It gave me intense abdominal cramps, but it didn't really induce the RUQ pain. It was hard to tell overall, because I was retching and the technician was hurrying through her part and pleading with me not to vomit.
I don't feel that it could be called a true reproduction of my original symptoms. I think we decided to do the cholecystectomy just because my gastroenterologist was out of ideas and my pain was so horrible. I had lost 30 pounds by then and I could only eat rice and graham crackers.
After that, the ERCP/sphincterotomy at least helped me to eat a little more, even if my pain is still bad.
I'm so frustrated because I feel like I have no where to go to get help. OHSU turned me down once and now will only see me one time for a "second opinion." After that, I have nowhere to go to get on-going care. My original gastroenterologist doesn't even want to talk about the original surgery, so he is not a resource. I went to another well-regarded practice who went through all they could think of, then they sent me up to Seattle to Virginia Mason. After that procedure, the doctor just told me there was nothing more that could be done and I would have to live on pain med's the rest of my life.
We are considering flying to another state to get care because I am desperate for help. My daily pain ranges from 4 - 8, and that's while I'm on Fentanyl, Norco, Flexeril, Xanax and Promethazine.
There has to be someone who can make sense of this. I used to be a normal person. I was happily married. I worked as a Certified Veterinary Technician. I had just adopted by 6th child. My life was going well. I just don't understand it.
Thank you for being kind enough to make inquiries into my case. I really feel honored.
One of the most knowledgeable physicians in these problems is Peter Cotton at the Medical University of South Carolina. My understanding is that he is considering retirement soon after a long career of taking care of patients similar to you. He has been considered the world expert and I have sent particularly challenging patients to him with pretty uniform satisfaction from these patients. You may want to consider a trip given the dead ends.
I took your advice and requested an appointment to see Dr. Cotton. We'll wait and see if he'll see me. I'm sure he's incredibly busy, but I just have to try to get in. I'm determined to get off of these narcotics, or at least reduce the amounts I have to take.
I first met Dr Cotton when he came to Duke in 1986 from Great Britain. He immediately elevated our biliary endoscopy service to world class status. He brought multiple high power colleages and subsequently trained some of the best in the country. He later moved to MUSC and did the same thing there. You won't find anyone in the world with more knowledge and skill in this area. Best of luck.
Unfortunately, I won't have the honor of meeting him. I contacted his clinic and they said he only does research at this point. They were still encouraging me to use their other specialists, or to have my doctor consult with one of them.
MUSC has been on our list of places to try if OHSU can't, or won't, help me. Since OHSU will only give me a "second opinion", and won't treat me, I just don't see how it will help. The doctors here in Portland all think that OHSU is the answer to every ill, but their untouchable attitude is hard to take. I will have waited for 5 months to see a doctor there, and then it will only be a resident. I've had 3 other experienced gastroenterologists give up on me, so I don't believe that an inexperienced resident is going to cure me -- but maybe that's an unfair conclusion.
I just want to see someone who can make sense of this relentless pain. I just want my life back.
Thank you again for your expertise, your insight, and your kindness.
I don't understand the OHSU attitude. My partner, Dr. Richard Pierce, who is also an expert panelist on this website, did his minimally invasive surgical fellowship there. If they are the tertiary care center of the area it would be hard not to take on these cases. What justification have they given for only rendering an opinion? By the way, I still think MUSC would be worthwhile as the program that he created is still a world class program.
I don't understand OHSU's policies. They turned me down once already months ago, and would not even call me to tell me why. This time, my GP contacted them and pleaded with them to take my case, which my first gastroenterologist wouldn't take the time to do.
The medical review board at OHSU first decided that Dr. Fennerty would be the best choice for my case, but I couldn't see him until October 15, and it would be just once. I am not exactly sure what happens when a resident is involved, though. OHSU does NOT communicate well about its practices, so I'll just have to wait and see.
I think they act a little high-and-mighty about their care, but it may just be this department. I've spoken with many others who have been treated at that hospital, and they never had to deal with this type of run-around. OHSU generally has a great reputation, so I can't understand the way I'm being treated.
I think I will call my doctor Monday to see about being referred to MUSC. My pain level is so bad, that waiting for months to be treated is like waiting for years. If I can get in sooner, or around the same time, and be seen by highly trained specialists who WANT to treat me, I just don't see any reason to deal with OHSU at all.
Thank you for your encouragement. I have felt so out of control in this process with OHSU, and I think it's time to take back that control and choose a different facility. I don't think OHSU will miss me!
Thanks for checking in again! I'll post any new info about my contact with MUSC.
That's a great suggestion, too. Unfortunately, I'm not going to be able to see any other doctor at this time. My doctor's office says it's too much trouble to send my paperwork again to another clinic. I was dumbfounded when they told me that. Wow. What a slap in the face.
I hate this total lack of control over my health care. It doesn't matter that I'm suffering everyday, and pouring more and more harmful medications into my system, because it's too much trouble to fax some paperwork. Sorry to sound so whiny. I'm just sick of the hierarchy in the medical world. The patient seems to always be at the bottom of the food chain.
I guess I'll just have to wait until September to see if OHSU can do anything to help me. I called them again today to see if they would agree to see me more than one time, but they said they won't know until they see me.
I shouldn't complain. I know many of the people on this forum are suffering far worse than I am. I want to have an attitude of gratitude for all of the wonderful things in my life, and not just focus on this illness, but the daily pain just drags me down. I'm going to see a therapist next week who specializes in helping people deal with chronic pain so I can work on this from a different angle.
Thanks CalGal for your suggestion. I'll keep that in mind for later on. I hope you're having a good day.
As a surgeon I would suggest that you get a set of your records. If you are having to do the footwork it would be good to have your own set for anyone that you may see in the future. I have seen many patients where I am one of multiple physicians that have rendered opinions and it has been quite useful when the patient has an organized set that we can go through together.
CasperFrench, I completely agree with the doc on his suggestion. In fact, I'd highly recommend you get paper copies of any and all tests you have done and start your own file. The office may charge you to do the copying, but you are legally allowed to have that paperwork. Once it's in your hands you can decide how you want to continue your search for answers.
I had thought about doing it before, but now I see it as a necessity, not just a convenience. It's unfortunate that MUSC will still not deal with me without my doctor's referral, even if I can obtain my records. Some places will allow you to self-refer if your insurance is okay with it.
I just don't see any problem with having multiple diagnostic options. If I wait 5 months to get into OHSU and they don't have a clue what to do, then I have months again to wait for another clinic to take me. I'm so hurt by the insensitivity of my GP's med assistant. She knows how much pain I'm in. She's talked to me before when I've been in tears, pleading for them to help me. How hard can it be to fax a pile of papers and make a few phone calls? We treat clients at our veterinary clinic with more kindness and commitment than that.
Well, today I will get started on getting my own set of medical records. I don't know what else to do beyond that, but it's something I'm sure I'll need soon enough.
Thanks to Dr. Watters and CalGal for your encouragement to take this step, which will help me have a little more control over my healthcare.
I went to OHSU and it was a total disappointment. They did not do a proper exam and also did not do a single test. They told me to go see their own pain doctors.
When I saw their pain doctors, they just diagnosed me with Fibromyalgia, which was NOT a new diagnosis since I've known I've had it for 28 years! Once they made that conclusion, they stopped considering any other answers for my RUQ pain. They just told me to start taking Cymbalta and Lyrica, and basically learn to live with it.
There's too much ignorance and prejudice among doctors toward people with Fibromyalgia. It's as if we don't deserve the same medical due diligence that "normal" people get. It is possible for us to have illnesses that are not related to FM.
So, I contacted Dr. Stuart Sherman at the University of Indiana, who agreed to review all of my records. About a week later, his nurse called to schedule me for November 8 and 9 to repeat the MRCP, the EUS, and an ERCP. Dr. Sherman must have seen something in my medical records that he felt was worth looking at again.
Dr. Sherman has worked with Dr. Lehman and has co-authored numerous articles pertaining to Sphincter of Oddi dysfunction, so I feel confident that he's going to be able to help me. If he says he thinks it's something else, then I will feel more confident with his diagnosis. Either way, I don't think he'll just send me home and tell me to go to a pain clinic like the other doctors have done.
Thanks again for your posts of help and encouragement.
Kelly, I am SO DAMN GLAD you followed up. Please let us know what happens.
As an aside, I've worked with a number of people who were diagnosed with FM who also had the confounding factor of being gluten intolerant - either having 2 genes for intolerance, or 1 gene for celiac and 1 gene for gluten intolerance. Interestingly, the body discomfort gluten sensitivity 'added' to the problem, made the FM almost unbearable. When dietary changes were made, a number of them found daily living a heck of a lot more comfortable. I'm not by any means saying gluten issues and FM go hand-in-hand, but if there is ANY indication you could have food intolerance issues, please check it out.
Hi Kelly, CalGal contacted me and asked if I would chime in. I read through your posts and it seems you and I have a lot in common. I struggled with RUQ pain for a long time, but things really got bad after the birth of my oldest son. He is 18 years old now. Shortly after he was born, a HIDA scan showed that my gallbladder had quit functioning. There were no stones or sludge, it just quit working! I was so relieved when I thought they had found my problem and could fix it. Unfortunately, even after my gallbladder was removed, my pain continued. I had many good doctors who tried to help... I even had a surgeon find a growth in the outlet of my stomach that he felt might be causing some of my nausea and pain and I had that removed (long story)... My pain continued. I started to do some of my own research and I finally saw a GI doctor who suggested SOD. I was referred to Dr. Lehman in Indiana. After my stomach surgery, I was considered high risk for post procedure complications and no one locally would dare do an ERCP for me. Dr. Lehman was amazing! He did my ERCP with manometry and I had no complications. The pressures in my CBD were high and he cut and stented it open. I was diagnosed with SOD III. I felt really good for about a year after that. When my pain returned, I went back to Dr. Lehman for another ERCP. This second time, he found both the CBD and the pancreatic duct pressures high and he cut and stented both. I had no complications and I went on my way. This time, my relief was short lived. About six months later I called Dr. Lehman and talked to him about my increased pain. He explained that he had been very aggressive with my last sphincterotomies and that he really didn't think it was wise to cut anymore. He suggested we try some antispasmodics and if that didn't work we would have to discuss other options.
I struggled for quite some time. I started to have more intense, daily pain and ended up resorting to pain meds. At this time last year, I was having a hard time eating and I was dependent on Morphine and a pain patch and using Percocet for break through pain. I had several ER visits and hospitalizations for pancreatitis and pain control. My enzyme levels were always just slightly elevated or normal. My PCP finally suggested that we seek out help from another specialist. I had also done a lot of research and the closest doctor who had his name all over the research was Dr. Martin Freeman. I told my doc that was who I wanted to see and he made the arrangements for me. I saw Dr. Freeman and he validated everything I had been going through and promised to help me...I cried! Dr. Freeman ran lots of tests and also did another ERCP thinking he would balloon the ducts open if they were closed. He found my ducts to be wide open and told me Dr. Lehman had done a phenomenal job with my sphincterotomies. I was diagnosed with chronic pancreatitis secondary to small duct disease. I had no more than come out of the anesthesia from my ERCP when Dr. Freeman introduced me to the transplant coordinator. My options were to continue the way I was and try to manage or undergo a total pancreatectomy with auto-islet transplant. It was a lot to take in. I went home to read all the information, talk to others who had it done and compose a list of questions for the surgeon I was referred to. I saw the surgeon in August of last year. She ran lots of labs and answered every single one on my questions. At that time I was not only dependent on pain meds, I had lost a lot of weight and my nutritional status was not good. They were considering putting in a feeding tube to bypass my pancreas. My blood pressure and heart rate was very elevated and I was put on meds for that as well. BTW, I hate taking meds with a passion! It was determined that I was an excellent candidate for the surgery and didn't even have to submit an application...they were ready to do it when I said the word. It was a major decision and it took me about three months to give in. At the rate I was going, if I wanted any chance at living, surgery was my only option.
The team of doctors at the University of Minnesota is amazing! Dr. Freeman and Dr. Dunn,my surgeon, gave me my life back! On May 5th I underwent a total pancreatectomy with auto-islet transplant. This also involved removing my pancreas and spleen and harvesting the islet cells from my pancreas and transplanting them into my liver. There is a chance that a person can become diabetic from this surgery, but even with that, I was certain that this was the only chance I had at getting any quality of life back. My surgery went miraculously well. I was told to expect 14 days in the hospital and 4 weeks in Minneapolis so they could watch closely to see how my islet cells were going to function in my liver. I was released from the hospital in an unheard of 7 days and headed home 13 days post op. I am completely off insulin and have no dietary restrictions... My islets are functioning well in their new home. Best of all, I no longer take pain meds or blood pressure meds. I have absolutely no SOD or pancreatic pain! All I take now is Prilosec, my pancreatic enzymes and a multivitamin and I am enjoying eating again! I started back to work just 3 months post op (I am a special education teacher). It's been a long journey, but it was so worth it....Life is so good!
My situation is extreme and I am sorry to have written such a long post. I am not suggesting that you may have to go through what I have gone through, but merely wanting you to know that you understand your body better than anyone and you have to be persistent to find the help you need. Gather your records, do the research, ask lots of questions and find that doctor that will help you. I have been so fortunate to have good doctors....some people aren't so lucky. As stated earlier, there are very few docs who specialize and understand this disease. You should see the faces of some people when I tell them I don't have a pancreas! : ) The research is out there though and the great doctors have their names all over them. ( Dr. Cotton, Dr. Sherman, Dr. Sutherland, Dr. Freeman, Dr. Lehman...) I have had my share of bad experiences and I have lost hope several times, but when I looked at my kids and my husband and got my priorities straight, I realized that my life was worth fighting for...at any cost! I want to feel well enough to enjoy every minute of it! I hope this helps a little bit. If you have any questions, I will be glad to help in any way I can.
I really, really appreciate hearing your story. My symptoms are somewhat different than yours, but we share a common story of being desperate to get help and needing multiple doctors, and tons of determination, to get well.
I'm so excited that Dr. Stuart Sherman has agreed to see me, even after OHSU declared there was nothing more that anyone could do to help me, except to change my pain medications. I am so impressed because I had to wait over 4 months to get into OHSU, and I will be able to see Dr. Sherman in just a little over a month.
I hope that my story eventually has a happy ending like yours, but I appreciate hearing that it may take more than one procedure to get there. It will help me keep my perspective that this isn't a quick fix disease, which I should well know from living on narcotics every day of my life for 2 years now.
I want to stay in touch with you, so I will post a comment when I get back from the University of Indiana. It's too bad that we have to go that far to get help, but it will be worth it if I can get my life back.
Thanks again to you and to CalGal (and to Dr. Watters!) for reaching out to me. I almost gave up trying to get more help, but these postings encouraged me to persevere and get another doctor to hear me out.
Bless you all for your care and concern for a total stranger in Portland, Oregon.
CalGal sent me yr post after I asked for help w horrible pain and treatment for Sod that didn't last. Are u still well? I have heard so much don't know if Sod is real issue. My panc tests are always normal except for one time having pancreatitis after ercp but have sure felt like had it again. If yr tests were usually borderline or normal how did they focus on panc as culprit? Can't imagine another trip anywhere but wondered if you thought seeing Dr freeman first would have been better or is that just me thinking hindsight? sounds like blessing yr surg recovery better than expected. Great concern of winding up worse than am but want part of life back. Would love to hear more from you
I came across your post and my story is similar to yours. RUQ pain, no other symptoms. Had gallbladder removed (after 2 additional Gastro's concurred) (no stones, HIDA scan 85%)with no relief and additional problems I didn't have before - diarrhea, constipation, bloating, all while on a low fat diet. Tried all the meds they have handed me (reluctantly - don't like to take anything) including cholestyramine, which made the bloating worse and constipated me. Tried zantac daily and then omeprazole for 3 months, which seems to have given me an overgrowth of bacteria for which I got 7 days of Xifaxan. Pain was intermittent in the beginning, but is becoming a constant along with daily diarrhea. They gave me Bentyl, an antispasmodic, which only seems to dull the pain, not get rid of it. The only abnormal thing in my test results was during a small bowel series where they noticed an abnormal fold in the bowel, right where it turns. I had a colonoscopy right after this and they said they saw nothing. I recently had CT scan which confirmed this abnormal fold and now they want to redo the colonoscopy (6 months later).
Up until now, the pain never bothered me when I would lie down. Never had trouble sleeping. Feels like a water balloon is filling up when the pain is really bad. I can tell the gastro is done with me. Told me to take immodium anytime I needed to leave the house and if they pain is too bad go to the ER. Really? I, like you, feel I am pretty tough, been healthy all my life until this and want to enjoy life, but the past 2 years has been hell. Can't understand why I can't get anyone to listen and work through this with me. I am trying to get into Johns Hopkins but have been told it could take 3 to 4 months.
I wondered how you were doing and if you ever got any relief. I hope so. I hope to hear from you.
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