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 "
superSuper aytinal 50 plus
Super aytinal for active adults
Super b complex
Super b complex with c
Super b-50
Super calcium
Super high vitamins and minerals
Super plenamins 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
normalNormal saline flush, CS,
colonoscopy, MRCP, endoscopy. She has not had SOD manometry or
ERCP from
fearFears and phobias of complications, and because, like I said, the
superSuper aytinal 50 plus
Super aytinal for active adults
Super b complex
Super b complex with c
Super b-50
Super calcium
Super high vitamins and minerals
Super plenamins 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
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.
Kris
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?
Adam
Either come up with alternative ideas or ???
"No? Well, what do you think is causing it?"
"Gee, I don't really know."
It's like, WOW, that's REALLY helpful then, THANKS!
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.
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.
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
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.
Thanks,
A
Kris
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
Kris
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
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
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
A
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.
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 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
Kris
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