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gastroenterology mystery illness
My 40 year old daughter has been very ill for about 2 years now with something that none of the many Dr.s she has seen have been able to identify. She has upper right sidded abdominal pain, severe enough to require 30mg oxicodone to take the edge off and make it tolerable. She also has constant nausea and vomiting and has lost 70 pounds in the past year due to the fact that everytime she eats (doesn't seem to make much difference what she eats) she has pain, nausea and diarrhea. She had her gall bladder removed about 3 years ago and it was somewhat better for about 6 months but has gotten consistantly worse since that time. She had a surgery about 6 months ago in which the surgeon tightened the upper stomach opening and opened the bottom. Since then she has had constant diarrhea, nausea and pain. The surgeon has given up and said, "Maybe this is just who you are." She has been unable to work and is exhausted with the slightest efforts. She is now being treated for depression since she is nearly housebound and having financial worries since she can't return to her job. Her disability insurance is about to run out and she is very ill. Please, can anyone help?
MEDICAL PROFESSIONAL
Clearly, there has been a comprehensive evaluation with the upper and lower endoscopy.
Sphincter of Oddi dysfunction can be considered, and is more prevalent in those without gallbladders. A Sphincter of Oddi manometry would be the test to consider if this is suspected.
I would obtain blood tests to exclude celiac disease, and send the stool off for analysis to exclude malabsorption.
Otherwise irritable bowel syndrome can be considered. Antispasmodic agents and tricyclic antidepressants are medications that can be discussed with a GI specialist.
This answer is not intended as and does not substitute for medical advice - the information presented is for patients education only. Please see your personal physician for further evaluation of your individual case.
Kevin, M.D.
www.kevinmd.com
Sphincter of Oddi dysfunction can be considered, and is more prevalent in those without gallbladders. A Sphincter of Oddi manometry would be the test to consider if this is suspected.
I would obtain blood tests to exclude celiac disease, and send the stool off for analysis to exclude malabsorption.
Otherwise irritable bowel syndrome can be considered. Antispasmodic agents and tricyclic antidepressants are medications that can be discussed with a GI specialist.
This answer is not intended as and does not substitute for medical advice - the information presented is for patients education only. Please see your personal physician for further evaluation of your individual case.
Kevin, M.D.
www.kevinmd.com
Yes some do not believe that the sphincter of odi does not exist. In my case he did the sphincterotomy because this was slowing down the passage way in my CBD. They also did all the bloodwork on me and this also helped to determine that I had blockage. In all of my reports it stated that I did not have pancreatitis which is very painful. After the second ERCP that was performed this released the sludge that was supposedly hiding up around my liver. I still have bouts here and there with some slow digestion, but I feel alot better than I did. I still get intermitten sharp pains in that area and I attribute this to something passing thru. One of my earlier diagnoses was IBS, which is what I believe they term it when they want to give up or just plain don't know. The gastro that I went to that did the final ERCP did not have good bedside manners and his nurses in his office were even worse. So believe me I know about that also. When I called to tell them (in between the last two ERCPs) that I was still bloating to look like I was 7-8 mos. pregnant they kept saying just take Milk of Magnesia and gasssex to keep yourself cleaned out. Well in between those two ERCP's I ended up back in the ER with diverticulitis. I hope and pray that your daughter gets some relief soon. Another thought is possibly he will nix this since he didn't think of this before and does not want to admit that the other surgery was unnecessary. Like in my earlier post, they waited until I was jaundiced before they really looked at the possibility of the stones.
Sorry I haven't gotten back sooner. The ERCP is a procedure that is done with a scope and I think a camera, down the throat and take stones out of the ducts. I can't remember the the long name for the ERCP (I will look it up and post it later, when I find it in my papers). Sometimes the smaller stones or sludge in the CBD do not show up any other way (which is what I was told) and sometimes they use the procedure of MRCP instead, but is not as accurate. There were very large stones in my CBD (common bile duct) which were impacted and probably left over from my gall bladder problems. They were impacted at the pancreatic head. If you check into this procedure or consider it as an option....just make sure there is a gastro that has alot of experience with this because the first one that attempted it on me failed due to his inexperience. I suffered in pain for way too long and was at ER's and hospitalized with doctors scratching their heads until the stones became large enough to be seen on the CT scan, which should never have happened. I am just sharing information to try to help because I can relate somewhat to unknown cause of pain that should never be taken for granted. I wanted to get to the root of the problem, not continue on painkillers forever. Pain is something that you shouldn't have to Live with, if there is something that can be done, they can't expect you to just give up.
Have they ever mentioned an ERCP. I suffered for 5 years post GB removal and finally it was discovered that I had stones and sludge in my CBD that took 3 ERCPs to remove. The stones were impacted and the pain level could not even be measured on the chart the last admission to the hospital. I ended up with high bilirubin, blood in my urine, and very HIGH liver enzymes. My son was told that had he not drug me to the ER when he did I would not be here. I was sick and tired of going to the hospitals and ERs only to come home feeling worse!! Find another gastro doc that won't give up. I was ready to give up and finally I got what I needed!! I still suffer from mild pain from time to time, but it is tolerable. I was on pain killers for quite some time also. There is no reason to just accept that comment from the doc.
My daughter was diagnosed with Median Arcuate Ligament Syndrome after gallbladder surgery failed to correct extreme abdominal pain. She had an MRCP which showed this. She also has been on pain med for almost a year for pain from damaged tailbone from childbirth....which won't seem to heal. The gallbladder didn't show to be diseased or have gallstones according to an ultrasound....but Hida scan showed that it was only functioning at 10%. We think now that the problem with the tailbone not healing normally and the gallbladder not functioning may have been caused by limited blood flow due to the MALS. She is going to see a vascular surgeon today. She is having severe abdominal pain. You can do a goggle and read about this to see if maybe your daughter should be tested for this.
I too am suffering from Right upper quadrant pain post gall bladder surgery 10 years
ago they have removed sludge and stones, but for 6 months have lost almost 28 pounds
and loss of apetite i was also told it is me, I am a RN and i believe there is a reason
for pain. Can a spincteroctomy re occur, they have put in a stent before which helped
but it also blocked,
let me know your thoughts and wish you well
ago they have removed sludge and stones, but for 6 months have lost almost 28 pounds
and loss of apetite i was also told it is me, I am a RN and i believe there is a reason
for pain. Can a spincteroctomy re occur, they have put in a stent before which helped
but it also blocked,
let me know your thoughts and wish you well
First, your story is inspirational. You have endured tremendous suffering. I am so sorry.
Wow. It saddens me that so many doctors have lost their drive to problem solve. I, too, have been given the "nothing seems to be Wrong with you" brush off. After many tears, a few suicide attempts, and losing my ability to work, I finally took my health care into my own hands. At my lowest point, I made just enough to not qualify for assistance, but not enough for insurance. Don't give up.
I have a Doctor friend in another state who coached me. I started interviewing Doctors. Its called a "meet and greet". If they won't do that, than you don't want them anyway. Ask questions like..."What approach do you take to difficult to diagnose cases?" Figure out what their philosophy of healthcare is. Think of all the resources a Dr. has. The Way they think is as important as their ability to memorize symptoms and drug formulas. Briefly explain some of you symptoms. As what approach they would take, an action plan. Ask what they would do when plan A doesn't work. What's plan B, C, and D? Name some obscure gasto. diseases and ask what their experience is in treating them. Don't be afraid to remind a doctor that You know your body best.
If you have insurance, bug them, Only talk to managers, if they won't pay for your 2nd, 3rd, etc. consultations. No, they don't really care about you, but the squeeky wheel gets the oil.
It is so much easier for me to give advice, than take it. I still suffer depression from constant pain and exhaustion, but a story like yours offers a great reminder that we are responsible for our own health. Sometimes that means being overly assertive. If you are paying for a service, it is Your Right to demand quality. It is so demeaning to see a person in pain and tell them they are fine or to just treat the pain and not stamp out the underlying cause. I have let several Dr.s make me feel 2 inches tall. I felt like a big ball of isolated sorrow. You Deserve to be Listened To!
Stepping down from my soapbox...which tests have you had done for celiac?
Wow. It saddens me that so many doctors have lost their drive to problem solve. I, too, have been given the "nothing seems to be Wrong with you" brush off. After many tears, a few suicide attempts, and losing my ability to work, I finally took my health care into my own hands. At my lowest point, I made just enough to not qualify for assistance, but not enough for insurance. Don't give up.
I have a Doctor friend in another state who coached me. I started interviewing Doctors. Its called a "meet and greet". If they won't do that, than you don't want them anyway. Ask questions like..."What approach do you take to difficult to diagnose cases?" Figure out what their philosophy of healthcare is. Think of all the resources a Dr. has. The Way they think is as important as their ability to memorize symptoms and drug formulas. Briefly explain some of you symptoms. As what approach they would take, an action plan. Ask what they would do when plan A doesn't work. What's plan B, C, and D? Name some obscure gasto. diseases and ask what their experience is in treating them. Don't be afraid to remind a doctor that You know your body best.
If you have insurance, bug them, Only talk to managers, if they won't pay for your 2nd, 3rd, etc. consultations. No, they don't really care about you, but the squeeky wheel gets the oil.
It is so much easier for me to give advice, than take it. I still suffer depression from constant pain and exhaustion, but a story like yours offers a great reminder that we are responsible for our own health. Sometimes that means being overly assertive. If you are paying for a service, it is Your Right to demand quality. It is so demeaning to see a person in pain and tell them they are fine or to just treat the pain and not stamp out the underlying cause. I have let several Dr.s make me feel 2 inches tall. I felt like a big ball of isolated sorrow. You Deserve to be Listened To!
Stepping down from my soapbox...which tests have you had done for celiac?
Just a thought on the sleepiness caused by the anti-spasmodic meds. You might want to try Dicyclomine. I was on that and Asacol a few years ago and it helped immensely. Asacol iss an anti-inflammatory and works in tandem with the anti-spasmodic. I didn't experience any side effects from the Dicyclomine so that might be something to look into. My GI specialist couIdn't pinpoint the source of my problem either as I was experiencing symptoms of IBD, IBS and Crohn's. The meds stopped the pain and bloating but not the chronic diarrhea. I stopped going to him eventually because he was offering me no solutions. I did some research on my own and now I take fiber twice daily and a probiotic/digestive enzyme combination before every meal. What I found in my research is that your colon will not always digest carbs and once they are broken down into simple sugars, they stagnate in the colon and build up gas and antibiotic organisms causing diarrhea. So I cut out carbs altogether. I eat nothing with sugar in it or high fructose corn syrup, nothing processed (including mayo and processed meats) and just make sure that if I cheat on the diet that there isn't a lot of sugar in it. I am also lactose intolerant so this severly limits what I can eat. I cheat about 3 meals a week and the probiotics seem to pick up the slack in those cases. My abdominal pain is gone and I still get diarrhea from time to time but it's not nearly as bad as it was before. A little Immodium usually clears it right up.
You do sound like you understand the frustration we havve experienced with this ordeal! Why is it that when Dr.s don't know the answer they blame the victim? I guess they are hoping she will give up as well and just disapear, leaving their MDiety complex in tact. They are giving her antispasm meds for IBS now and it does help a little but she is so sleepy. We're wondering if it would be of any advantage to look for another Dr. now but this one at least knows her history. They are all so afraid of malpractice suits that they are unwilling to do the tests necessary to get a definitive answer. Guess you can tell I am angry. They are not helping my daughter and she is going further in debt everyday with Dr. bills and not being able to work. Thanks so much for your input and ear to my frustration.
I just noticed on your profile that it said you were female. For some reason I thought you were Memaskid Dad, so sorry for that confusion and saying father in the last post to your daughter. Haha, these things are really misleading with only having screennames to make reference to. So I'll make this easier - my name is Marie (although that wasn't too had to tell from my display name). :)
I have similiar symptoms and have also had to deal with horrible pain and nausea. They have me on Dilaudid which also helps me with my pain, but a lot of nausea meds don't seem to work. When I was hospitalized last month for my stomach issues they put me on a different medication that I hadn't yet tried. It's called Promethazine and it has helped incredibly with my nausea. Has she been tested for Gastroparesis and/or IBS or taken any prokinetic drugs to help with her symptoms?
Thank you for your comments. It seems like so many people have this problem following a gall bladder removal yet the Dr.s don't seem to have a clue about the cause. memanatrixkid was supposed to have (yet another) endoscopy yesterday but after 3 hours of waiting they couldn't get their equipment to work so she went home. The associate Dr. (primary gastro was out of the country...again) read from the chart aloud and he said, "Maybe this is the best she will be.") Constant pain, still losing weight (lost 70 pounds so far), constant nausea and diarhea and very low blood sugars, 60 sometimes. This is the best she will be? I can't accept that and neither can she! She is a young woman with children and a husband who have been on hold for nearly 2 years because the Dr.s don't seem to know or care what is wrong. Sorry for the rant...I'm at my wit's end. Hope you feel better.
Thank you so much for your response. Remember...It's not me who is ill but my daughter, Memanatrixkid. I don't know if she has been tested for celiac but she has tried staying off carbs and that didn't help. I'm having trouble getting her to check her messages. She is so frustrated and hopeless, as I'm sure you understand well. Thanks again for your encouragement. Her next step is to get another opinion but she has had several and they are so demeaning it is hard for her to follow through with and no one can do that for her.
THanks for the info. Actually it is my daughter, memanatrixkid, who is sick. I[m just a worried mom.
I'm so sorry you are suffering so. It is so frustrating when the symptoms are severe, like yours and they can't find the cause! We mentioned the possibility of chron's disease to her PCP and he said "No. It doesn't fit." What is the test for Chron's? She knows that she has a mild case of gastroparises and IBS but that doesn't explain all of her symptoms. Her PCP thinks that it is about adhesions from the gall bladder removal but they cut those loose in March and she had a little less pain for awhile but now it is worse than ever. She has also run a low grade fever all through this but her blood tests show nothing. We've been fantasizing about finding a "Dr. House" somewhere. LOL He may be a jackass but at least he stays with it till he finds a cause!
Thanks so much for your support and information.
Thanks so much for your support and information.
it sounds like your daughter has crohn's disease! My cousin has it and what your saying sounds like her before she was diagnosed it almost killed her!!! they caught it but later then they should have! She has to wear a bag to go to the bathroom because the crohn's disease destroyed her insides. She lost 65 lb was really pale couldn't keep anything down! Tell her to see a specialist and start by getting tested for crohn's Disease!
Im going though similar things too and I was (diagnosed with hypoglycemia, IBS, lactose intolerance , and became allergic to practically all carbs! I lost alot of weight but they say I dont have crohn's or celiac disease ,nor any glutein allergies, but now I been getting constant pain in my RLQ, burning in my gallbladder, and feel like Im getting sledgehammered in my right kidney all at the same time,it don't go away! I become lethargic, really pale, very cold fingers, constantly having nightsweats, I get fevers out of nowhere but I don't have a cold and Im not sick,I get nausea, diarrhea or constipation, I got catscans, mri, ultrasounds everything comes back normal all the time! I wish you luck!
Im going though similar things too and I was (diagnosed with hypoglycemia, IBS, lactose intolerance , and became allergic to practically all carbs! I lost alot of weight but they say I dont have crohn's or celiac disease ,nor any glutein allergies, but now I been getting constant pain in my RLQ, burning in my gallbladder, and feel like Im getting sledgehammered in my right kidney all at the same time,it don't go away! I become lethargic, really pale, very cold fingers, constantly having nightsweats, I get fevers out of nowhere but I don't have a cold and Im not sick,I get nausea, diarrhea or constipation, I got catscans, mri, ultrasounds everything comes back normal all the time! I wish you luck!
Thank you so much for your input. She just recently had another round of blood work done and included in that was checking for Lupus, pancreatic enzymes,etc. The only thing they found was a vitamin D deficiency. She has started on supplements with the hope that they will increase her energy. Thanks again.
I truly believe there is a problem w/the pancreas.
Insist on pancreatic enzyme testing and any other tests that can be done to determine whether or not it is the pancreas.
Insist on pancreatic enzyme testing and any other tests that can be done to determine whether or not it is the pancreas.
Thank you so much for the explaintion. It does sound a lot like what my daughter experiences. She is scheduled for yet another endoscopy at the end of the month. I will refer her to this note and see if she wants to talk to her gastro about it but when she mentioned Sphyncter of Oddi Disorder he just poo pooed it. He's supposed to be the best in the country but he sure has no bedside manner. She is taking antispasm meds now and they do seem to help with the agony she suffers right after eating but they make her so sleepy. Thanks again. I appreciate your sharing so much.
Thanks for the info but...I don't understand what all the initials stand for. Would you put it into english for me? LOL I appreciate any ideas anyone has since the Docs don't seem to have any except, "Learn to live with it." Not an option! Thanks again. Memanatrix
Hi....sorry you have not resolved your issues just yet, but hang in there until you do.
It does rather seem as if your current problems are associated with the gall bladder removal, and I m sorry, but I know zilch about the gall bladder,
Nausea - for the past 6 weeks I have felt so nauseous I have been unable to eat, some days just a fruit yoghurt and maybe a banana. Along with the nausea I have lower abdominal pain, bloating, dyspepsia and severe weight loss - some 14 lbs in the past 4 weeks. I went to see my GP 3 weeks ago and he prescribed omeprazole, which is an anti-ulcer drug. Didn't get any better and got an urgent appt with my gastro last week. He has ordered a CT scan of my pancreas,liver,abdomen and pelvis -having that June 24th. Then 9th July he is doing an upper endoscopy under sedation. He doubled the omeprazole and also prescribed domperidone, an anti-emetic, which I had when having FEC chemo for breast cancer. They have helped and I am eating a little more, but the bloating is quite painful. I have recently noticed a pain behind my right breast which goes up into my shoulder blade and neck, and suspect myself it may be pancreatitis, although could just be old age! Never had it before and don't know if it is connected with the breast cancer. Most probably not, as when my tumour was diagnosed on normal 3 yrly mammo, it was not palpable, even by my GP so have no idea what a tumour feels like or brings pain. It is in the same breast as the tumour.
Gastro didn't mention pancreatitis at our consultation, so it was a shock to see it on the CT scan order form. He did mention that my symptoms could be caused by the 2 strictures found on MRI last November - I was asymptomatic then, so nothing was done. This could explain most of my sysmptoms as it seems food is getting blocked. I am having difficulty going to the loo - and after fighting diarrhea for 38+ years, quite a change.
I do hope you get a definitive diagnosis soon, and appropriate treatment.
Take care,
Liz.
It does rather seem as if your current problems are associated with the gall bladder removal, and I m sorry, but I know zilch about the gall bladder,
Nausea - for the past 6 weeks I have felt so nauseous I have been unable to eat, some days just a fruit yoghurt and maybe a banana. Along with the nausea I have lower abdominal pain, bloating, dyspepsia and severe weight loss - some 14 lbs in the past 4 weeks. I went to see my GP 3 weeks ago and he prescribed omeprazole, which is an anti-ulcer drug. Didn't get any better and got an urgent appt with my gastro last week. He has ordered a CT scan of my pancreas,liver,abdomen and pelvis -having that June 24th. Then 9th July he is doing an upper endoscopy under sedation. He doubled the omeprazole and also prescribed domperidone, an anti-emetic, which I had when having FEC chemo for breast cancer. They have helped and I am eating a little more, but the bloating is quite painful. I have recently noticed a pain behind my right breast which goes up into my shoulder blade and neck, and suspect myself it may be pancreatitis, although could just be old age! Never had it before and don't know if it is connected with the breast cancer. Most probably not, as when my tumour was diagnosed on normal 3 yrly mammo, it was not palpable, even by my GP so have no idea what a tumour feels like or brings pain. It is in the same breast as the tumour.
Gastro didn't mention pancreatitis at our consultation, so it was a shock to see it on the CT scan order form. He did mention that my symptoms could be caused by the 2 strictures found on MRI last November - I was asymptomatic then, so nothing was done. This could explain most of my sysmptoms as it seems food is getting blocked. I am having difficulty going to the loo - and after fighting diarrhea for 38+ years, quite a change.
I do hope you get a definitive diagnosis soon, and appropriate treatment.
Take care,
Liz.
Thank you for your kind words.
Hello there. I can understand your issue with the Promethazine. Although my nausea is healed, I usually fall dead asleep right after I take it. The problems that you are facing with the Marinol is because Marinol has always been side to have the same side effects as marijuana. That explains the side effects of short-term memory and not feeling completely there. I'm actually quite surprised that you have chronic diarrhea because usually when people are taking narcotic pain medications like you and your father stated you were, they usually experience constipation and sometimes are even prescribed laxatives along with the narcotic so the maintain bowel movements. I feel your pain of not wanting to live the rest of your life like this. I'm 20 years old...exactly half your age and I can't imagine living through this for much longer. I'm so saddened because you have kids that you need to take care of but you're so sick you can't always be there for them. I really wish you the best of luck!
Thank you for the welcome.
Yes I have been tested for Crohn's and it was negative. I have not been tested for pancreatitis. I am seeing a Gastro/surgon. All he keeps saying is that I have to wait for at least 6 months from the surgery date(March 17, 2008) to see if it has worked. I can tell you that I feel as though things have become worse since the surgery. Yes I have had 3 upper endoscopies & a colonoscopy. Some problems were found with the endoscopy. The surgery was supposed to fix these issues. I have been looking into the possibility of having something called Sphincter of Oddi dysfunction. I do have a lot of the symtoms. I mentioned it to me GP and he did not think that is what the problem is. He fills it is adhisions that have re-formed. But that doesn't explain the nausia.
I will keep trying. Thank you for the support from afar. I have a wonderful support team that are in my corner here. But you can never have enough, right?
Yes I have been tested for Crohn's and it was negative. I have not been tested for pancreatitis. I am seeing a Gastro/surgon. All he keeps saying is that I have to wait for at least 6 months from the surgery date(March 17, 2008) to see if it has worked. I can tell you that I feel as though things have become worse since the surgery. Yes I have had 3 upper endoscopies & a colonoscopy. Some problems were found with the endoscopy. The surgery was supposed to fix these issues. I have been looking into the possibility of having something called Sphincter of Oddi dysfunction. I do have a lot of the symtoms. I mentioned it to me GP and he did not think that is what the problem is. He fills it is adhisions that have re-formed. But that doesn't explain the nausia.
I will keep trying. Thank you for the support from afar. I have a wonderful support team that are in my corner here. But you can never have enough, right?
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