My mom is 57. She has had pain in her stomach increasing over the past couple years. Almsot a year ago she had her gallbladder removed. The pain has progressed more and more since. From what I've read about SOD on the internet I have a feeling it is SOD, but my dad, who is an internist, doesn't think so, nor does the "super specialist" in San Francisco think so. They think it's a motility problem. (The local GI specialist has given up.) All medication attempts have failed. All tests come back normal, CS, colonoscopy, MRCP, endoscopy. She has not had SOD manometry or ERCP from fear of complications, and because, like I said, the super specialist doesn't think that is what is going on. Despite that in the research I've seen it says only about 20% of patients who undergo the ERCP and sphincterotomy get pancreatitis, the super specialist in SF said in his experience he would say the number is more like 50%. He says if my mom got pancreatitis she would be in the more horrible pain imaginable and that she would "wish she had her old pain back." So hearing that doesn't exactly make he anxious to do it.
The past few months have been a roller coaster. About two months ago my dad took her to the hospital at night because she was so naseated and sick. Her symptoms are constant RUQ pain and frequent (1-5 times a week) naseau. So she was hospitalized for days and that's when they did the most recent colonscopy. She's scared and depressed and not sure of how she can go on living like this.
My question for you is, do you know how many people get better in the long term with these difficult cases? To narrow my question a little, how many people who get treated for SOD through spinchterotomy recover? That is to say including the ones who get pancreatitis after the operation as well as the ones who do not, what is the overal recovery rate? If it's good, then she can possibly look at the pancreatitis as a necesary path to get to a full recovery. Do you know what I mean?
As far as where my dad is with this, (who is naturally her ongoing primary care physician) he is talking to a local surgeon who also knows about what is going on so far. The surgeon's only thought is to remove part of the colon. The surgeon says it is no garuntee, but it is all she can think of. Do you know of any cases where someone gets their colon removed because of these sorts of symtoms? If so, how often do they fuly recover?
Your thoughts are highly appreciated.
There are several options to treating Sphincter of Oddi dysfunction. Here is a summary for their success rates.
1) nifedipine - studies are not able to quantify its efficacy.
2) nitrates - again, no controlled studies are available to quantify the efficacy.
3) biliary sphincterotomy - small studies show 85 percent efficacy (measured in long-term improvement) vs 30 percent in the placebo group.
4) botulinum toxin injection - no studies are able to quantify its efficacy.
5) surgery - studies show a 50-60 percent efficacy, however there is a chance of worse outcomes.
As to whether a colectomy is appropriate, it would depend on what disease is causing the symptoms. I would consider a second GI opinion to determine whether SOD manometry should be considered. Another, less invasive test to consider would be a fatty meal ultrasound.
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.
Hogan. Treatment of sphincter of Oddi dysfunction. UptoDate, 2004.
Sorry to hear that your mom is still suffering with her pain. I was curious why a surgeon would want to take out part of someone's colon without clear evidence that something IS wrong with her colon. did I miss something in one of your prior posts?? I wasn't aware that something showed during the colonoscopy....Hope she feels better soon.
Dr. Kevin gave a pretty good answer for 16 dollars, but I was hoping he would answer the question about the eficacy of colectomy for patients with ongoing, mysterious stomach pain of the sort I described my mom is having.
Kristin, I dont think you missed anything. The colonoscopy didn't show anything. What we're working with now is the fact that 1) The super specialist in San Francisco who is affiliated with UCSF medical school does not think SOD is the cause of her symptoms, and he does this stuff all day every day for years and years. His warning about pancreatitis and the potential for ongoing worsening symptoms after the procedure also don't make the ERCP/manometry option sound too good right now.
As to your question about why a surgeon would suggest this. Well, the surgeon did something that is rare for a doctor to do. The surgeon asked my mom, "what do you think is going on?" My mom thinks it's her colon. The medical explanation for that feeling, from my dad, is that if the super specialist doesn't think it's SOD, then what else could it be? That is to say, sort of a process of elimination. The surgeon was actually suprised that the super specialist DIDN'T put a stent in when my mom went down to SF a few weeks ago. However, after reading his report, the surgeon said she could see why he would feel that it isn't SOD, and she admits he knows more about this than she (she had referred my mom down to him in SF). So with the super specialist not thinking SOD is the problem, but rather a motility problem, and with my mom's gut reaction (no pun intented) being that it's her colon which is causing the problems, the idea now is for the colectomy if her symptoms continue. She had a horrible day yesterday, exteeeemely nauseated for hours. Luckily she started feeling better and didn't have to go to the hospital. Today she isn't nauseated, but she is holding her side like she always does, the pain never really goes away completely.
How about you, how have you been? What's been going on?
As a surgeon who's performed tons of colectomies as well as other abdominal operations, I'd say there's nothing in the info you provided that suggests any role at all for colon resection. Perhaps there's more info. Based on what you've provided, I'd certainly NOT be considering such a thing.
GES is a Gastric Emptying Study. You eat a prepared food that has some nuclear agent added to it. Then they put you in front of a screen and see how long it takes for the food to leave your stomach. I only ask because I have a problem with gastroparesis--slow stomach emptying and it causes severe pain, nausea, bloating, vomiting at times, ect. Makes eating extremely challenging. It is a really easy test to preform to rule it out. But I am not a doctor, so you might want to ask him.
"Whatever??????" I'm a person who posts here when I think it may help. I'm not part of the site, don't get part of the 16 bucks you mentioned. You asked for opinion as to whether colectomy would help, I answered. Sorry if I offended you.
Sorry, I was a little flustered at the time I wrote that. I know you aren't part of this or the 16 bucks. (I'm aware of the fact that some doctors enjoy being helpful regardless of making a fee.) However, I have a problem with a doctor saying what he DOESN'T think something is, without at least offering a GUESS as to what it IS. My mom has run in to this a lot so far, "No, I don't think that's what's causing your pain."
"No? Well, what do you think is causing it?"
"Gee, I don't really know."
I mean, surgeon, do you have any personal experience with any ort of mysterious GI illness? Obviously if you have any medical experience with this your thoughts are appreciated. But what Im talkin more about is PERSONAL experience? Do you know what it's like to be clutching at straws for possible answers/solutions? Have you or anyone in your immediate inner family ever been very sick yet the doctors are unable to give definitive answers and the family is getting more and more scared and desperate? If so, you would know what it's like to be told by a medical professional, "I dont think that's what it going on, but I also have nothing to offer as far as ideas about what might be going on." Maybe there's no scientific reason to be upset by that statement. That is, a doctor, who is a scientist, can rule out through process of elimination certain ailments. That doesn't mean they also have any clear idea as to what IS going on. But still, on an emotional level, not a rational one, it is quite frustrating to hear that from a doctor.
I've been doing ok lately. I've been having more good days than bad, so I believe my insides are finally starting to heal. I wanted to also tell you that I have been to the SUPER specialists in TN and in PA. The one in TN told me everything was fine (after ERCP w/manometry). The one in PA found that my problem was with the bile duct and therefore I had biliary sphincter of oddi dysfunction. When my symptoms returned 5 months later the SUPER specialist in PA was completely confused, which made ME more confused and therefore I received yet another diagnosed of "probably IBS or some sort of functional bowel disease". My third SUPER specialist is a SUPER specialist in ERCP. That is what his department does all day long , every day of the year. He preformed another ERCP w/manometry because he suppected the pancreatic sphincter also had dysfunction. WOW, what a shock and BIG relief that he was correct. My point is, that just because a doctor is a SUPER specialist in the gastroenterology department doesn't mean that he treats people with SOD all the time. Therefore, a wrong diagnoses might be given.
Glad to hear you're having good days more often now. Very glad to hear that.
With regards to what you're saying, quite honestly I agree with you. It's been my gut feeling all along from the reading Ive done online about SOD that that is what she has. It's just my dad's personal opinion that if this super specialist doesn't think it's SOD, then it's probbaly not SOD. I said how about take her to the Mayo clinic? He said it's all the same kinds of doctors there as this super specialist in SF. Maybe he's all wrong. He admitts he has no experience with this stuff. In all his practice of over 30 years he's never seen such a difficult and persistent case of GI problems. And like I said, my mom's local GI has no idea what's going on, I heard him say it (you feel so helpless when the specialist says he has no idea what's going on). Either way, my mom is scared of complications from any and all risky procedures. Besides two days ago, which was really bad for several hours (she vomitted 5 times), the past week or so has been better. Shes not on any meds. Shes trying to just think positive and will herself better. Who knows how long or how well that will really last. She's always holding her side in some discomfort, even on what she considers better days. Soon enough I'll start on a major offensive to convince them to seek other specialists and more opinions on the possibility of SOD. It's just such a shady road at that point. I guess the best bet if they went that path would be to travel across the country to see your top personal top choice doctors for dealing with this.
I am sorry to hear that your mom is still not doing any better.
You already know much of my history and where I am at currently with being referred to MAYO clinic and I just wanted to say that my mom and several folks I know have been to MAYO clinic and what they do that is different is that they will schedule you with several different specialist (depending on systoms) possibly in different departments. Then they schedule to be there for a couple to a few days and yes run more test and possible procedures and in the end they meet to discuss what the diagnosis might be. This is my understanding. And from my experience of seeing many "super" specialists in different areas over the last year and 5 months the thing that I wish for the most was that these Dr's spoke to either or at least my PCP instead of just sending a letter via mail. Just my thoughts! I can tell by your posting that you and your family are getting very frustrated and I know it can be difficult to watch someone you love suffering. I am sure you are being positive around your mom, and this is the most important thing. Friends and family that have been there for me during this time is what has helped me a great deal to get through this rough time. Take care TC
One other thing I forgot. I would really hope that your mom would go through the motlility tests to verify that is what the problem is before having part of colon removed. They would be much less envasive especially the GES. Also if that is truly what it is at least she could get some confirmation and if it in not then considering the SOD might be more of an option. the GES is also much less evasive than the ERCP. I have had both done. TC
I know she has had motility studies to check how things are passing through her, and it came back normal (adding to the frustration of not knowing what's going on). However, I dont know specifically about the GES.
If she doesn't get better I'll push the Mayo clinic thing and well, just the general idea that one super specialist is not enough, must keep seeking more opinions.
I just wanted to say that tuff case is right about how the major clinics and hosps work, Mayo, CCF, John Hopkins, etc..You are usually scheduled for alot of tests in different departments. When it is said and done you will know what is wrong and what needs to be done to fix it.
My husband has been going through something similar as your mom. He had his gallbladder out Nov.03 and was fine until about mid-February and then started having the pain again. He's had ultrasound, 2 abdominal CT's, ERCP with sphinterotomy and about a million blood tests. So far nothing has improved and no medication seems to help. We are both at our wits end and it is very distressing to see that so many others seem to be in the same boat and the medical profession does squat. He had the ERCP a week ago and afterwards the pain was actually worse. We went to the ER yesterday and he was there all day. They did another CT specifically looking at his pancreas to see if he had developed pancreatitis but it is fine and his bloodwork again was fine. It makes you want to pull out your hair because everything looks fine and normal yet there is still all this pain. I hope your mom is able to find some relief somehow. We are headed back to the surgeon in a week. I'm hoping he'll just decide to do an exploratory and see what the heck is going on. Best wishes.
just wanted to let you know that the healing process from having a sphincterotomy is approximately 6-8 weeks. It is just the same as having any other surgery. For me, it always takes me 1-2 months before I actually start to see any improvement. Alot of doctors don't know the time frame that it takes to heal from that procedure. They seem to think that since it was outpatient surgery that you should be feeling fine within a couple of days. Don't get me wrong, there are plenty of people who actually DO feel better within a week or so. But for most, and from my personal experience, it takes the usual time frame 4-8 weeks. Tell your husband to hang in there and to treat himself as though he had any other surgery, (rest and plenty of fluid). Hope this helps.
Kristin, thanks so much for your reply!!! I wish someone had told us that when my husband had the procedure or when he was in ER a few days ago. Maybe we wouldn't be panicing and thinking something else has gone wrong. So far he is still having acute pain with no relief in sight. He is starting to have an appetite again so I guess that is something good. thanks again!
Your welcome! No doctor has ever told me that in the past either. Only with my last ERCP did the doctor tell me to give it 3 months and then to call and let him know how I am feeling. This doctor really knows his stuff. He also gave me pain meds and told me to medicate myself at home so I wouldn't have to go to the ER. It really helped me alot. Good luck to your husband.
I have been suffering pain in the gallbladder area for the past ten years, but like others, tests don't reveal an obvious cause.
I am now considering could this be an allergy, i.e. dairy products which is causing a permanent inflammation of the gallbladder or ducts, or maybe a low grade infection.
Anyway I am now trying cutting out all dairy in everything, reading all product labels, to see if this helps.
If all tests cannot reveal the cause of what I know is an awful pain, then maybe it is worth exploring allergies.
Hope this helps
My husband just came back from his second ERCP, there is nothing wrong. The sphincerotomy is fine, the incision is as big as they can make it without having a bowel perforation. Kristin, please tell me what kind of meds did you take for this?? My husband is getting so depressed about feeling so ill all the time.
Hi, I'm sorry your husband doesn't have any relief yet. On his second ERCP did they do manometry on the pancreatic duct? I'm asking because when I had my first ERCP w/manometry the doctor only tested the bile duct for high pressure and at that time it measured fine. Then 2 years later the pressure measured high for the bile duct, so they did a sphincterotomy. When I started to have symptoms again (pain,etc), the same doctor checked me 2 more times (with an ERCP) and said that the sphincterotomy was fine and he didn't know what my problem was. Finally with my 5th ERCP (3-04), the doctor who I went to said that he suspected that I had high pressure in the pancreatic duct and that since I was continuing with symptoms then it needed to be checked out. He was right and my pressure was very high in the pancreatic duct and preformed another sphincterotomy on the pancreatic duct too. Here is a web-site that may be interesting reading for you and your husband. It explains alot about SOD. (http://www.joplink.net/ ) Once you access the web page , type in a search for (Sphincter of Oddi Dysfunction : Diagnosis and treatment) written by Stuart Sherman and Glen Lehman. Dr. Lehman is the doctor who I see now. Let me know if you have trouble getting to the web-site and finding the article.
Sorry, I forgot to mention the meds that I currently take. I take prevacid 1x a day, elavil 20mg at bedtime and donnatal approximately 3-4 times a day. The pain meds that I take are mepergan (demerol & anti nausau med together), and also Oxycotin 10mg for break through pain.
Thanks so much for the info. No I don't think they did any sort of manometry. I'm not sure if they do that much at the hospital we've been going to...it sounds like the dr just did a quick look at the sphincterotomy. Today my husband is just having a bit of pain, not even close to what it's been like but it could just be the sedation and pain meds he had for his ERCP yesterday still affecting him. I'm just hopeful that maybe that was the problem. He's supposed to go back to see the surgeon in a couple of weeks and his family dr on Monday. I'm going to print out a ton of info and give it to them. Are you still currently having pain or are things settling down now?
Today I am having an ok day. I had a bad week prior though. 3 days on pain meds and 2 days off, then back on meds again for pain. I called to give my 3 month update to my gi doc. He said it sounds like the pancreas is still giving me lots of pain. He wants me to try pancreatic enzymes to see if they help with the pain too. I hope your husband continues to feel better each day. Remember, it takes lots of TIME to heal from a sphincterotomy. After my first biliary sphincterotomy, it took me approximately 2 months to feel better and then I was fine for about 5 months. Then that's when it started all over again. Then I had MRCP's and they kept on showing small stones in the bile duct. So the next 2 ERCP's were supposed to clear the duct of stones, but the doctor said he didn't find any. Go figure?? Before I had my last ERCP w/sphincterotomy (in march) I suspected that I might have chronic pancreatitis. The gi doc just gave me the official word yesterday that he is treating me for it now. And when I have my next visit he will proceed with further treatment as necessary. Did you get a chance to look at the web-site I posted yet? Hope you gather lots of info. and bring it with you to the next dr. appt. for your husband. Good Luck
Yes I did have a look at that site you gave me and I think I'm going to print out that article and take it to the next appt with the surgeon. How is the blood work related to the pancreas looking for you? Is it out of whack? The problem with my husband is that a lot of his bloodwork has always been okay and he hasn't had any other symptoms ie jaundice, nausea/vomitting besides pain so that is also what is making it hard for them to figure out what is going on. Apparently his liver function bloodwork was a bit abnormal but are back to normal post sphincterotomy. Now I am wondering if there is something wrong with the pancreatic duct but I don't know if they looked at that with the last ERCP. Sounds like from that article that it is common for both the sphincter of Oddi and the pancreatic duct to cause intense pain. Also I have written down the meds you are taking and I'm taking that with me as well to the dr today. He's seeing our family dr today. Finally one last question...do you feel cold all the time? I don't know if this is something related to these problems but my husband is cold all the time, even his skin feels cold to touch. He's lost a lot of weight but he's within normal levels for his height, I'm going to ask the dr to do a check on his thyroid levels but I was wondering if this was something you've experienced as well. I know that all this is quite difficult for you and my husband but I have to say that it eases my mind a little to know that there are others that have the same problems. You start thinking of all kinds of terrible things when you don't know what is going on. Thanks so much for all the info you have give me!!!!
In the beginning (6 years ago until 2-03) my liver enzymes would always elevate during an attack. After my first sphincterotomy (2-03) I felt pretty good after the initial recovery period. Then 5 months later I started to have attacks again and my liver enzymes were either normal or slightly elevated , also my pancretic enzymes were in the high-normal range, but never over the top number. During an ER visit the attending physician asked me if I had chronic pancreatitis. I just looked at him and said no one has given me that dignosis yet. That's what got me thinking that something was probably going on with the pancreactic side of things. After my last sphincterotomy (3-04), I had intense pain again and was admitted into the hospital for 3 days. My pancreatic enzymes were elevated then...Of course I had just had the panc. sphincter cut and the bile duct dilated too. That was the only time (on record) that my pancreatic enzymes were elevated. But I had these attacks for almost 2 years even before I started to seek medical help in 2000. Just to let you know that a person doesn't have to have elevated enzymes when having pancreatitis. I am always cold! I carry a sweat jacket with me everywhere. I don't know if it has to do with the pain, etc or what. I am also thin, so that could just be the reason too. Before I had the pancreatic sphincterotomy I would always get chills real bad when I was hurting. I would have to bundle up in 3 blankets and even put them into the dryer to make them warm also. My husband helped alot with that. Good luck with your husbands doctor appt. today. I hope you get some answers to the many questions you have. I don't mind at all if you ask me a million questions. If I can help anyone, even in the smallest way, then that helps me to cope as well.
Glad to hear that the doctor appt. went well. I had my thyroid checked a couple of years ago. All was fine. I also have been diagnosed with celiac disease (in march) too. I belong to a pancreatitis group on yahoo and have gotten lots of helpful information and support through them. If your husband is interested feel free to e-mail me direct for the link. ***@****. Just make sure you put ERCP in the subject line or I might delete it. The group also has a great database of doctors around the USA who treat lots of patients with SOD and pancreatitis, etc. Take care
Well that is good to know that you can have pancreatitis without having eleveated enzymes because my husband's have been fine lately but the dr is sending him for all kinds of bloowork. She is really good about listening to me and talking to me as a health professional (I am a RN) and not like I am an idiot who doesn't know what they are talking about. So along with the bloodwork she also prescribed him an antidepressant and demerol. Lately the pain has been a little better but still getting worse after meals. He took a demerol last night before bed and he had a good sleep and then this morning it was better than it had been but started getting a bit worse when he got up. She gave us the name of a GI specialist so we have to follow up with the surgeon that has been following my husband and if he has no further ideas what to do then I want to get a referral to this other dr. I'm hoping maybe this is the end though, maybe his sphincterotomy is starting to heal and the pain will slowly decrease. Still if it returns as what happened with you then maybe we'll still have to see this other dr. Have you had your thyroid checked? The dr is having that checked as being cold can be a symptom of hypothyroidism. Could also be from less body fat particularly if you've lost a lot of weight with all of this. Anyway thanks for all your help, talk to you again soon.
thanks for asking. she say's she's feeling "fair" these days. For her that means no nasea, but still abdominal pain. When she's naseated, that's what she considers her really bad days, for obvious reasons. I don't think that's happened in a couple weeks. But I think my folks realize they won't be able to go on like this forever. In the future she'll need further medical opinions, evaluations, and probablty procedures. How have you been feeling?
Something I wanted to mention...when my husband saw his family doctor recently she said that she has had many patients having similar complains of upper abdominal pain following laproscopic gallbladder removal and was wondering if some studies need to be done to see if it is really the best way of gallbladder removal. I know they prefer it as it is less expensive and faster recovery but if you factor in that a lot of people seem to be having complications well then it ends up being more expensive in the long run if these problems may not have occurred with the more invasive method of gallbladder removal.
Also I think that people should continue to seek second, third or forth opinions if they can't find someone who is going to do something to first find the problem and then fix it. This seems to be something that a lot of doctors seem to throw up their hands and say they don't know what is causing the pain. People should not have to live with this kind of pain.
Doctors aren't Gods, you can't expect them to be able to solve all medical issues. Just because it's 2004 doesn't mean medical science has "figured it all out" yet. In 50 years we may look back at this time with wonder at how LITTLE we actually knew, in the same way we can now look back at the 50's and think the same thought. But you may be right that more studies should be done. The removal of the gallbladder too often seems to cause more/additional symptoms. And you may be right that more doctors should try to stick with their patients longer. But the idea that "people should not have to live with this kind of pain" well, who is going to disagree with that? But the fact is if the doctors are doing their best and thinking of everything they can think of given the most up to date medical science and there is still no positive results, you can't blame medical science, you can only blame the time you live. The same pain in the year 2050 might be easily diagnosed and treated. Being in this forum and reading people's posts about their unsolved medical problems is quite sad after awhile. There's so many people living with pain, like my mom. I used to think my dad, an internal medicine doctor, could fix anything. Now that I see him looking perplexed at this, I know there is much medical science doesn't know (yet?). The best thing you can do is go to the best, most highly recommended specialists in the country, or perhaps the world. Beyond that, all you can do is except life for what it is. Easy for me to say, I don't live with pain. At least those of us here who are having pain aren't also living on the street with no family or support, and believe me, there are some people in that category.
Thanks for asking how I am. It has been rough lately had more nausea. Last week woke up with dry heaves. The Reglan appears to not be working as well anymore. My dr. did call Mayo clinic and I now have an appointment for 8/9. Although this is to the neurology department as the GI department would not take me off their waiting list to schedule an appointment. They said if I was up there in a hotel for 5-10 days to call and they would try to schedule me. When the neurology department scheduled me I called the GI department and was told when I am up, there the Neurology department will schedule me for an internal GI appointment. So, I am closer to being scene at Mayo. TC
Sorry to hear you're not feeling well. I think nasea is one of the worst feelings there is. My mom thought Reglin worked for awhile, but soon discovered it didn't. There are no meds that help her. Something new my dad thinks of trying, just makes her worse. She's not on anything. I call and my dad answers and he says she's not having a very good day, then I hear her in the background say, "no, tell him Im feeling better." It really tears her up to have to tell people in her family she's not doing well. She feels she's bring others down.
I think she should make an appt. for Mayo clinic as well. She wants to just try to get better on her own, and that's fine for now. But I think the family should have a back-up appt at Mayo clinic, so someday if things get worse the appt. will have gotten closer.
Im glad to hear you're closer to getting to Mayo clinic. I really hope you get things all worked out when you're there, or at the very least get a plan to manage your situation in a way that will result in the LEAST pain/discomfort/nasea for the rest of your life.
I was reading back in the string of questions and comments and found a very interesting comment by Katatonic under Jonnee's question on 5/22. You may want to take a look at it. It may help in your mother's situation. Let me know what you think. TC
I read it and forwarded it to my parents. Thanks for noticing it.
Who knows? Imagine that. One surgery to fix it and everything's better. I wouldn't even be worried about suing for money, I'd just feel so happy to be better. I'd just write a letter to the original doctor explaining how they has messed up my life and how they might try to do things differently in the future. (Anyone watch the Golden Girls? There is an episode where, while eating in a restaurant, Dorothy sees a doctor who had treated her horribly when she went to see him. So she goes up to him and gives him a piece of her mine - good episode).
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