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Statistics on recovery rate after treatment for SOD dysfunction?
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.
Adam
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.
Adam
A related discussion, sod dysfunction was started.
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).
Adam
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).
Adam
Adam,
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 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 the comment that you suggested. Very interesting reading!!!! Hope you are well today.
Kris
Kris
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.
Adam
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.
Adam
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
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.
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.
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.
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?
A
A
Have not heard from you lately. How is your mom? TC
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.
Hi,
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
Kris
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
Kris
Hi,
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.
Kris
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.
Kris
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!!!!
Hi,
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
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
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?
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.
Kris
Kris
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.
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
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
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.
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!
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.
Kris
Kris
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.
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