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Daughter is 19...tests for gallbladder negative so far..help!!
Hi!
My daughter is a 19 year old college sophmore. Family doc diagnosed her with a "possible" ulcer and put her on Carafate & Prevacid. (4/01) 3 weeks later, doc switched meds to Aciphex. She experienced very bad reflux with that med..doc said time for an EGD..I took her to GI doc in nearby bigger town..they tried more meds..he did the EGD with small intestine biopsies, negative for everything..no ulcers, gastritis, hernias, etc..so then did an ultrasound as now URQ is painful and sensitive to touch..again negative. Doc put her on Bentyl, diagnosed her as having IBS. (although he didn't tell us that was her diagnosis..just put it in her files)..Gave us no IBS info or dietary suggestions. A year later (5/02) I was informed of his diagnosis when we changed insurance. Daughter is now in pain again..so I searched the net, found the "Eating for IBS" book & she felt better..not great, but better. Then the end of August she had a severe "attack"..typical gallbladder symptoms. Went to med center..waited 2 hours, gave up, went home. Searched for new GI..in same town as college..(100 miles from parents) new GI did blood work, another EGD, biopsies & collected a bile sample. Negative again, except for some evidence of gastritis. HIDA scan scheduled for Tue. She has had enough of tests & frankly I am tired of this too. She is nauseaus all the time, has pain after every meal. She is not fat, does not smoke, drinks a beer now & then.
If this HIDA scan is negative..then what?? One of her profs told her last week that "maybe she should get her head examined"..Suggestions welcome!!
My daughter is a 19 year old college sophmore. Family doc diagnosed her with a "possible" ulcer and put her on Carafate & Prevacid. (4/01) 3 weeks later, doc switched meds to Aciphex. She experienced very bad reflux with that med..doc said time for an EGD..I took her to GI doc in nearby bigger town..they tried more meds..he did the EGD with small intestine biopsies, negative for everything..no ulcers, gastritis, hernias, etc..so then did an ultrasound as now URQ is painful and sensitive to touch..again negative. Doc put her on Bentyl, diagnosed her as having IBS. (although he didn't tell us that was her diagnosis..just put it in her files)..Gave us no IBS info or dietary suggestions. A year later (5/02) I was informed of his diagnosis when we changed insurance. Daughter is now in pain again..so I searched the net, found the "Eating for IBS" book & she felt better..not great, but better. Then the end of August she had a severe "attack"..typical gallbladder symptoms. Went to med center..waited 2 hours, gave up, went home. Searched for new GI..in same town as college..(100 miles from parents) new GI did blood work, another EGD, biopsies & collected a bile sample. Negative again, except for some evidence of gastritis. HIDA scan scheduled for Tue. She has had enough of tests & frankly I am tired of this too. She is nauseaus all the time, has pain after every meal. She is not fat, does not smoke, drinks a beer now & then.
If this HIDA scan is negative..then what?? One of her profs told her last week that "maybe she should get her head examined"..Suggestions welcome!!
I have been reading your dialogue and much of it brought back memories of my wife's situation for nearly 20 years. She is 57 now and is doing fine.
She was constantly not feeling well to the extent of eventually being diagnosed with bi-polar depression. She had many,many tests for abnominal problems and pains, including IBS and gall bladder, almost all related to the digestive system, taking on many problem manifestations. Finally, after seeing a lot of doctors, one mentioned the possiblity of her having Celiac Disease. She was tested for that, a simple blood test, and she was found to be positive.
Celiac is a dietary problem causing intolerance to wheat/gluten in food products. She immediately went on a wheat/gluten-free diet and all symptoms have ceased almost entirely. Unfortunately, the delay in proper diagnosis cost her some damage to the villi in her intestines, but with a little luck, maintenance of the diet may eventually repair this.
I encourage anyone who has gastro-intestinal or gall bladder problems with no apparent solution, to at least, be tested for Celiac Disease. It is a simple blood test and it may save a gall bladder or other surgery. Undiagnosed CD may manifest itself in various ways and produce inaccurate tests for liver, intestines, gall bladder, and related digestive organs. This will cause much frustration with doctors who can't seem to figure the test results out. And, frankly, our experience is that few doctors understand CD patients. My wife belongs to a CD Support Group and many CD histories are the same -- many doctors, many diagnoses, many drugs, no success. Their diet was the only problem!
You can research this further on the internet at various sites: CELIAC.COM is the major site though.
She was constantly not feeling well to the extent of eventually being diagnosed with bi-polar depression. She had many,many tests for abnominal problems and pains, including IBS and gall bladder, almost all related to the digestive system, taking on many problem manifestations. Finally, after seeing a lot of doctors, one mentioned the possiblity of her having Celiac Disease. She was tested for that, a simple blood test, and she was found to be positive.
Celiac is a dietary problem causing intolerance to wheat/gluten in food products. She immediately went on a wheat/gluten-free diet and all symptoms have ceased almost entirely. Unfortunately, the delay in proper diagnosis cost her some damage to the villi in her intestines, but with a little luck, maintenance of the diet may eventually repair this.
I encourage anyone who has gastro-intestinal or gall bladder problems with no apparent solution, to at least, be tested for Celiac Disease. It is a simple blood test and it may save a gall bladder or other surgery. Undiagnosed CD may manifest itself in various ways and produce inaccurate tests for liver, intestines, gall bladder, and related digestive organs. This will cause much frustration with doctors who can't seem to figure the test results out. And, frankly, our experience is that few doctors understand CD patients. My wife belongs to a CD Support Group and many CD histories are the same -- many doctors, many diagnoses, many drugs, no success. Their diet was the only problem!
You can research this further on the internet at various sites: CELIAC.COM is the major site though.
I've been experiencing the same symptoms for over 12 weeks now. I am only 23 years old. It has gotten to the point that I had to take a medical leave of absence from my job. I had a HIDA scan done as well and just found out that my emptying percentage was 21%. I am going to have a second opinion Friday and consult with a sugeon Monday. I feel for your daughter and hope she gets some answers soon.
Hi
My next step is going to be asking for emptying tests for sure. They really had us all thinking they had checked it already and I did think it was the right choice to believe them because I thought it was their job to be honest with the patient. They were honest to an extent... The important thing is I know now. I may not know if it weren't for this forum and talking to people like you.
I had to have one of those barium swallows done too. It was only one glass of the white paint though. Kind of gritty in your teeth. I remember when the (is it a radiologist?)person was taking pictures of my intestines he said to me "does it hurt right here?" and I said "yes it always hurts there". I thought they had found something but when I went back to the specialist she said that my test came back normal. I did have a nurse that is a friend of mine look at my results and they were actually normal. Still puzzled why the doc thinks pain is okay. She was at a loss of words when I asked her why. I know that gas pain is normal but all the time?
I read your other posting and it sounds like you had a good doctor. I really hope for your sake that there is some evidence that comes up to say that the gallbladder needs to come out then that way it won't be up to you(or your daughter) to make that decision. At least that doc laid it out on the table for you. Good luck, I'll keep my fingers crossed for you!
My next step is going to be asking for emptying tests for sure. They really had us all thinking they had checked it already and I did think it was the right choice to believe them because I thought it was their job to be honest with the patient. They were honest to an extent... The important thing is I know now. I may not know if it weren't for this forum and talking to people like you.
I had to have one of those barium swallows done too. It was only one glass of the white paint though. Kind of gritty in your teeth. I remember when the (is it a radiologist?)person was taking pictures of my intestines he said to me "does it hurt right here?" and I said "yes it always hurts there". I thought they had found something but when I went back to the specialist she said that my test came back normal. I did have a nurse that is a friend of mine look at my results and they were actually normal. Still puzzled why the doc thinks pain is okay. She was at a loss of words when I asked her why. I know that gas pain is normal but all the time?
I read your other posting and it sounds like you had a good doctor. I really hope for your sake that there is some evidence that comes up to say that the gallbladder needs to come out then that way it won't be up to you(or your daughter) to make that decision. At least that doc laid it out on the table for you. Good luck, I'll keep my fingers crossed for you!
have you asked about having the HIDA scan done that actually checks the functionality of your gallbladder? seems like that only makes sense at this point....but what do i know???
My daughter had her "small bowel follow through" today...had to drink 3 glasses of "nasty stuff that looked and tasted like paint"..quote...made her pretty nauseaus...but not alot of pain...so..now we just wait for more results that show nothing...
I will send along your e-mail to my daughter too...thanks...
My daughter had her "small bowel follow through" today...had to drink 3 glasses of "nasty stuff that looked and tasted like paint"..quote...made her pretty nauseaus...but not alot of pain...so..now we just wait for more results that show nothing...
I will send along your e-mail to my daughter too...thanks...
Hi. I had my HIDA scan done at the hospital where I work. I found out from one of the nurses that I didn't actually have my gallbladder checked. They only did the HIDA scan to check for stones. So that's why there is nothing about emptying percentage on the results. And here I thought I was getting somewhere. The nurse told me that they do a different test to check measurements like that. What do I know? Oh I am sooo frustrated, it seems like they just keep giving me the runaround. I really have lost a lot of respect for these doctors.
I know what you mean by the "Twilight Zone" because it's true. No matter how much I try to get away from it, its always there on and off and it's beginning to take over my life. Sorry I don't mean to be a downer. I really hope things are going better for your daughter and you. If you need to talk or vent again you can always email me @ k_d0919_99***@****. Thanks for your advice about being aggressive I really do need to do that it's just a matter of having the energy and a good day. Will keep in touch. Thanks for listening too.
I know what you mean by the "Twilight Zone" because it's true. No matter how much I try to get away from it, its always there on and off and it's beginning to take over my life. Sorry I don't mean to be a downer. I really hope things are going better for your daughter and you. If you need to talk or vent again you can always email me @ k_d0919_99***@****. Thanks for your advice about being aggressive I really do need to do that it's just a matter of having the energy and a good day. Will keep in touch. Thanks for listening too.
Where did you have your HIDA scan done? YOU are the consumer..it was YOUR test..they are YOUR records...you have a right to get your hands on them....trust me..it is in English, not complicated medical jargon & the report is typed..can't blame it on handwriting...I would call the hospital & ask for that department and tell them you want to know the emptying percentage. That is the point of the test!!!! they must have calculated it...how else could they say it was normal??? Normal compared to what???
If I hadn't known ahead of time what my daughter's test results were..I would have believed the GI when he said basically "no big deal"...bottom line for him..he hadn't done his "homework" before we got there, had not even looked at the HIDA scan report & didn't want to admit he was wrong..or he just didn't want to talk to us because he was in a hurry...either way...not going back there!!!
Your family history is just SCREAMING gallbladder....why don't they see that???
I feel so bad for you....
Now I feel like going back to the first GI and asking to read the reports from previous tests myself...except I can't, because my daughter is over 18 and they are HER records..so I don't think they will let me...
My daughter is not feeling good this week..she felt somewhat better last week..not sure how much of that was due to the fact that the HIDA had some results & then after seeing the GI, she is down again...
It is like some sick roller coaster ride you can't get off..just when you think it is going to stop..it takes off again..like "The Twilight Zone"...(ask your Mom...:)...old TV show)
Good luck...be AGRESSIVE!!!
Will keep you posted...
If I hadn't known ahead of time what my daughter's test results were..I would have believed the GI when he said basically "no big deal"...bottom line for him..he hadn't done his "homework" before we got there, had not even looked at the HIDA scan report & didn't want to admit he was wrong..or he just didn't want to talk to us because he was in a hurry...either way...not going back there!!!
Your family history is just SCREAMING gallbladder....why don't they see that???
I feel so bad for you....
Now I feel like going back to the first GI and asking to read the reports from previous tests myself...except I can't, because my daughter is over 18 and they are HER records..so I don't think they will let me...
My daughter is not feeling good this week..she felt somewhat better last week..not sure how much of that was due to the fact that the HIDA had some results & then after seeing the GI, she is down again...
It is like some sick roller coaster ride you can't get off..just when you think it is going to stop..it takes off again..like "The Twilight Zone"...(ask your Mom...:)...old TV show)
Good luck...be AGRESSIVE!!!
Will keep you posted...
Hi
You know, I asked the specialist what my emptying percentage was for the HIDA scan and he didn't even have a copy of my results. So I phoned my GP (luckily he had a copy) but the medical office assistant said that she didn't see anything about a percentage on my HIDA results. So now I'm really curious. I'm not sure where else to get my results from.
That seems strange to me that there was nothing on the sheet about the emptying percentage. It makes me think that there might be some kind of mix up with the results. That possibility is always in my mind about all my test results. It wouldn't be the first time. I walked around on a broken foot for 3 days because my GP was mailed the wrong x-ray results a few years ago.
How's your daughter feeling? How is she dealing with all this? I felt worse than usual today. Spent most of the afternoon on the couch.
I had huge worries that the specialist would just slough me off and say "give it some time". I went through that with my GP. He told me to put a hot water bottle on the pain and take some ibuprofin. Why do they always do that? Is it because of my age? They make you feel kind of inadaquate. Like I don't deserve to have help because chances are it's all in my head anyways. I have to travel for five hours to see the next specialist. I sure hope it's worth it.
I will be in touch and let me know how things go for you on Thurs.
You know, I asked the specialist what my emptying percentage was for the HIDA scan and he didn't even have a copy of my results. So I phoned my GP (luckily he had a copy) but the medical office assistant said that she didn't see anything about a percentage on my HIDA results. So now I'm really curious. I'm not sure where else to get my results from.
That seems strange to me that there was nothing on the sheet about the emptying percentage. It makes me think that there might be some kind of mix up with the results. That possibility is always in my mind about all my test results. It wouldn't be the first time. I walked around on a broken foot for 3 days because my GP was mailed the wrong x-ray results a few years ago.
How's your daughter feeling? How is she dealing with all this? I felt worse than usual today. Spent most of the afternoon on the couch.
I had huge worries that the specialist would just slough me off and say "give it some time". I went through that with my GP. He told me to put a hot water bottle on the pain and take some ibuprofin. Why do they always do that? Is it because of my age? They make you feel kind of inadaquate. Like I don't deserve to have help because chances are it's all in my head anyways. I have to travel for five hours to see the next specialist. I sure hope it's worth it.
I will be in touch and let me know how things go for you on Thurs.
dismissive...good word choice...they ALL seem that way, don't they?
It doesn't sound like you got very far...did you find out what the HIDA scan emptying percentage was?
My daughter sees a surgeon on Thursday..my biggest fear is that he also will say wait...& 90% of what I read says..if it's the gallbladder, it will not resolve itself..so why wait???
I am also going to do some more research on SOD....good luck..keep me posted...
It doesn't sound like you got very far...did you find out what the HIDA scan emptying percentage was?
My daughter sees a surgeon on Thursday..my biggest fear is that he also will say wait...& 90% of what I read says..if it's the gallbladder, it will not resolve itself..so why wait???
I am also going to do some more research on SOD....good luck..keep me posted...
Hi
I had my appointment with the GI today. It went better than usual I think. My mom being there was a plus. There is so much information to absorb and making appointments for tests and this and that---it's too much and I have a hard time following. Supposed to have a CT scan sometime before Dec. 17. Then we go to another specialist with the results of the CT to discuss SOD.
First my GI told me that SOD wasn't a factor in all my pain but today he changed his mind. He seems to think that SOD is my problem now but he doesn't know really... So here I go again looking for another opinion. One thing he did that was good was give me some samples of Zelnor-- the new drug for people coping with IBS-C. Ofcourse if I hadn't asked for them I wouldn't have them. I'm hoping Zelnor will shed some light on the situation. I still found this doctor very dismissive and he almost didn't want to hear about the daily pain. He just looks down at his paper and says "uhhahh". (Although he did take 30 sec. to look through my journal I kept from the last week).
So he's basically ruled out the gallbladder altogether. I don't know what to do now. I guess I just sit and wait like usual. I should research SOD more. Maybe he needs to research SOD more, then he can be sure of himself. (sorry its just infuriating). Still not able to eat. Still on the non-fat diet. I've lost another 8 pounds that I didn't want to lose. No energy. Back to square 1.
I had my appointment with the GI today. It went better than usual I think. My mom being there was a plus. There is so much information to absorb and making appointments for tests and this and that---it's too much and I have a hard time following. Supposed to have a CT scan sometime before Dec. 17. Then we go to another specialist with the results of the CT to discuss SOD.
First my GI told me that SOD wasn't a factor in all my pain but today he changed his mind. He seems to think that SOD is my problem now but he doesn't know really... So here I go again looking for another opinion. One thing he did that was good was give me some samples of Zelnor-- the new drug for people coping with IBS-C. Ofcourse if I hadn't asked for them I wouldn't have them. I'm hoping Zelnor will shed some light on the situation. I still found this doctor very dismissive and he almost didn't want to hear about the daily pain. He just looks down at his paper and says "uhhahh". (Although he did take 30 sec. to look through my journal I kept from the last week).
So he's basically ruled out the gallbladder altogether. I don't know what to do now. I guess I just sit and wait like usual. I should research SOD more. Maybe he needs to research SOD more, then he can be sure of himself. (sorry its just infuriating). Still not able to eat. Still on the non-fat diet. I've lost another 8 pounds that I didn't want to lose. No energy. Back to square 1.
So sorry about your GI acting up that way! I know it's soooo frustrating. My respect for Doctors (from my experiences)has deteriorated a lot. Sometimes they can be very callous. I don't blame you for any of the frustration you're having. It's even worse for you because you're looking at the results and it says there is something abnormal. You'd think with your results saying cholecystitis he would pay more attention! He can't expect your daughter to just live with the pain another four months! I understand your anger and frustration.
Did you get another GI set up then?
I know my doctors also have the horrible habit of doing the same things. They "can't do anything for me" and they walk out of the room before I even get a chance to ask questions. Hopefully you will have more luck during your next appointment. It will be interesting to see what the surgeon has to say after all this.
I hope they don't just leave it up to you to make the decision to have the gallbladder removed. You'd feel more comfortable knowing it is the right thing to do with the doctors approval.
Your daughter is lucky that she has you looking out for her. By the way, feel free to vent anytime!
Did you get another GI set up then?
I know my doctors also have the horrible habit of doing the same things. They "can't do anything for me" and they walk out of the room before I even get a chance to ask questions. Hopefully you will have more luck during your next appointment. It will be interesting to see what the surgeon has to say after all this.
I hope they don't just leave it up to you to make the decision to have the gallbladder removed. You'd feel more comfortable knowing it is the right thing to do with the doctors approval.
Your daughter is lucky that she has you looking out for her. By the way, feel free to vent anytime!
I hope to find a doctor that will say.."oh yes..i have had HUNDREDS of cases like this..we need to take the gallbladder out & I will give you a 100% guarantee that your daughter will be symptom free"..of course then I wake up...
You are correct..I DO want someone else to make the decision for surgery...as much research as I have done..i do realize that I am not a doctor..but sometimes I wonder if the doctors are doctors!! & almost any doc is a stranger...he is NOT emotionally involved..& I guess that is a good thing to a small degree..but I have yet to even see any compassion! (from some of the staff..yes I have..but from the docs..nope..)
Thanks for the insight..
You are correct..I DO want someone else to make the decision for surgery...as much research as I have done..i do realize that I am not a doctor..but sometimes I wonder if the doctors are doctors!! & almost any doc is a stranger...he is NOT emotionally involved..& I guess that is a good thing to a small degree..but I have yet to even see any compassion! (from some of the staff..yes I have..but from the docs..nope..)
Thanks for the insight..
Has anyone hear that has not seemed to get anywhere with tests or surgeries had the Gastric Emptying Test? I had all the classic symptoms, nausea, vomitting, bloating, cramping....I have Gastroparesis, a paralyzation of the stomach. Just a suggestion! Good Luck!
i need to vent!!! to make a long story short..my daughter's GI said today that he can't find anything wrong with her. I asked about the HIDA scan..he said he hadn't read it yet..so he quick scans it..then says..well..nothing in here ..gallbaldder just a little abnormal...then he tells her..just come back in 4 months! He had asked her in the middle of this, about pain medication & she said she sometimes took tylenol 3...then he says, out of the blue, I won't give you any of that..if you need that..then you need to see someone else..like she is a druggie or something..so he looks at me & says, "did you want to see someone else?" & I say, yes..so he rattles off a name & then says, "or..did you have someone else in mind?"..to which I replied, yes & he got kinda huffy with us, almost ripped her test results out of her file, says " I will have the nurse copy these tests & you can just take them yourself"...& he left the room!!!!
Now..I have since read the HIDAscan results..the report says "delayed visualization of gallbladder in 60 minutes..consistent with chronic cholecystitis, ejection fraction at 32%..." then a little note about how that number may not be quite correct due to the morphine...
The nurse that I had talked to on the phone last Friday was the same one that made copies the tests & then when the doc was out of hearing, she looks at us & says.."so what is he going to do?"..& I looked at her & told her "nothing..he says nothing is wrong & come back in 4 months.."..& her jaw just about hit the floor..I know she wanted to say something, but couldn't..i thanked her for being so helpful and nice and she told us "no problem, it's my job, ggod luck", looked at my daughter & said "you are so sweet...i hope things work out ok for you"..
the whole thing is just so weird & it makes me so MAD!!!
We see a surgeon next week, thursday. We dropped off the copies of her tests before I drove my duaghter back out to college.
Why is this so difficult?????
Now..I have since read the HIDAscan results..the report says "delayed visualization of gallbladder in 60 minutes..consistent with chronic cholecystitis, ejection fraction at 32%..." then a little note about how that number may not be quite correct due to the morphine...
The nurse that I had talked to on the phone last Friday was the same one that made copies the tests & then when the doc was out of hearing, she looks at us & says.."so what is he going to do?"..& I looked at her & told her "nothing..he says nothing is wrong & come back in 4 months.."..& her jaw just about hit the floor..I know she wanted to say something, but couldn't..i thanked her for being so helpful and nice and she told us "no problem, it's my job, ggod luck", looked at my daughter & said "you are so sweet...i hope things work out ok for you"..
the whole thing is just so weird & it makes me so MAD!!!
We see a surgeon next week, thursday. We dropped off the copies of her tests before I drove my duaghter back out to college.
Why is this so difficult?????
HI
I don't know what the HIDA'a emptying percentage was but will find out Mon. I remember drinking a little creamer before going for the HIDA. Apparently there was enough fat in that to tell if the gallbladder was contracting properly.
All my mom's siblings had their gallbladders out in their 20's. There were stones found after their surgeries even though the tests that were done before showed no stones. I know for two of mom's sisters it heppened about a year after their first born which is more common I guess.
My IBS involves a lot of straining, a lot of hardness in my abdominal region, and for some reason there is always a lump right around my belly button and when the doctor pushes on my stomach the pain always radiates to the same(belly button) region. I had a barium swallow but the results came back normal. Apparently that pain can be caused by pancreatitis as well so that's what I've concluded. I can't seem to find any other information about pain around the belly button...
Your daughter is a busy girl. My pain seems to get irritated while working because there is a lot of heavy lifting, and lots of physical strain like that. I'll admit I enjoy my job but my body doesn't. I work in a hospital.
I went for six months without any pain until Sept. Starting school again may have had something to do with it. There is a lot of stress. I am working towards my Bachelor of Science.
I also suffered with panic attacks and was prescribed Wellbutrin SR about a year and a half ago. I havn't taken one of those pills for eight months.
I was also given Tylenol 3's to take whenever I have pain. They make me so relaxed that I can hardly drive to school. It is very hard to concentrate and study when your mind is numb from pain killers. The antispasmodics they prescribed to me-I can't take because they are known to irritate the pancreas which ofcourse I have to avoid. The SOD thing.. they checked for that during my ERCP test. Negative.
I hope if your daughter does have to have surgery that it will be soon. The less pain and suffering the better. A couple of weeks isn't that long at all. Good luck!
We'll see how things go...
I don't know what the HIDA'a emptying percentage was but will find out Mon. I remember drinking a little creamer before going for the HIDA. Apparently there was enough fat in that to tell if the gallbladder was contracting properly.
All my mom's siblings had their gallbladders out in their 20's. There were stones found after their surgeries even though the tests that were done before showed no stones. I know for two of mom's sisters it heppened about a year after their first born which is more common I guess.
My IBS involves a lot of straining, a lot of hardness in my abdominal region, and for some reason there is always a lump right around my belly button and when the doctor pushes on my stomach the pain always radiates to the same(belly button) region. I had a barium swallow but the results came back normal. Apparently that pain can be caused by pancreatitis as well so that's what I've concluded. I can't seem to find any other information about pain around the belly button...
Your daughter is a busy girl. My pain seems to get irritated while working because there is a lot of heavy lifting, and lots of physical strain like that. I'll admit I enjoy my job but my body doesn't. I work in a hospital.
I went for six months without any pain until Sept. Starting school again may have had something to do with it. There is a lot of stress. I am working towards my Bachelor of Science.
I also suffered with panic attacks and was prescribed Wellbutrin SR about a year and a half ago. I havn't taken one of those pills for eight months.
I was also given Tylenol 3's to take whenever I have pain. They make me so relaxed that I can hardly drive to school. It is very hard to concentrate and study when your mind is numb from pain killers. The antispasmodics they prescribed to me-I can't take because they are known to irritate the pancreas which ofcourse I have to avoid. The SOD thing.. they checked for that during my ERCP test. Negative.
I hope if your daughter does have to have surgery that it will be soon. The less pain and suffering the better. A couple of weeks isn't that long at all. Good luck!
We'll see how things go...
You mentioned that you have had a HIDA scan..do you know what the emptying percent was? My daughter was given Ensure to drink, to cause the gallbladder to contract. However, just 2 weeks before, standard procedure was to inject CCK into her IV. I have read that it can make a difference how they make your gallbladder contract as to the outcome..just wondered..
You definitely have a family history of gallbladder problems! Did they all have stones? & how old were they?
The most common symptom of IBS is diahreah, sometimes constipation. My daughter had neither of these...just the pain and nausea, oh..and burped alot too! As for stress..she is a college student..but this summer when she was NOT in school, it was worse..not better as you would think..she had been unable to link stress to her symptoms. She did go on a very restrictive diet..out of the book "Eating for IBS"..if you search that on the net..you will get all the vital info...however..if your gallbladder was acting up, this diet would help that too..(which it did for a bit)
At times she has taken Kava-Kava..which is good for stress..that helped for awhile..she tried Papaya pills...the first GI had her on Bentyl..an anti-spasmodic..which helped a bit at first..(she was so tense from the pain..i think all it did was relax her) She did experience panic attacks last winter..& the doctor prescribed Paxil..but after taking it for 2 weeks she was incredibily nauseaus..so she stopped it..I don't think she has had one since then..but it did make her wonder.."is this all in my head?"
As for working...she is a student..a Theatre Major..currently in 2 productions..a travelling Shakespeare show and the Laramie project. both shows will be over by this sunday. The shakespeare show is pretty physically demanding..she has to jump on another actors back, he throws her off, then she jumps on two people & they are trying to "shake" her off..she falls alot...the other show is calmer...but she has 18 credits this semester, plus shows and rehearsals and works in the costume shop. Being busy helps with the pain..she thinks about it less..and the doctor did prescribe tylenol 3 with codine for her..(but it is hard to think and study with that!)
Now she is just trying to decide when to fit surgery into her schedule..I know..that sounds dumb..but after 18 months of this..whats a few more weeks? She sees the GI on Wednesday & a surgeon on Nov 7. Then we will know what and when they will do something..unless she gets worse in the meantime..
I don't think a doctor can tell if your gallbladder trouble was caused by crash dieting. They seem to have enough trouble just finding out that it isn't working, let alone why...
Good luck with the enzymes...& I would think that a good GI doc would be looking at your family history & WHY you have pancreatitis..isn't the gallbladder a factor in that? Also, sphincter of Oddi..i did some reading on that..
so..lots more researching hours, huh?
Let me know how things go..
You definitely have a family history of gallbladder problems! Did they all have stones? & how old were they?
The most common symptom of IBS is diahreah, sometimes constipation. My daughter had neither of these...just the pain and nausea, oh..and burped alot too! As for stress..she is a college student..but this summer when she was NOT in school, it was worse..not better as you would think..she had been unable to link stress to her symptoms. She did go on a very restrictive diet..out of the book "Eating for IBS"..if you search that on the net..you will get all the vital info...however..if your gallbladder was acting up, this diet would help that too..(which it did for a bit)
At times she has taken Kava-Kava..which is good for stress..that helped for awhile..she tried Papaya pills...the first GI had her on Bentyl..an anti-spasmodic..which helped a bit at first..(she was so tense from the pain..i think all it did was relax her) She did experience panic attacks last winter..& the doctor prescribed Paxil..but after taking it for 2 weeks she was incredibily nauseaus..so she stopped it..I don't think she has had one since then..but it did make her wonder.."is this all in my head?"
As for working...she is a student..a Theatre Major..currently in 2 productions..a travelling Shakespeare show and the Laramie project. both shows will be over by this sunday. The shakespeare show is pretty physically demanding..she has to jump on another actors back, he throws her off, then she jumps on two people & they are trying to "shake" her off..she falls alot...the other show is calmer...but she has 18 credits this semester, plus shows and rehearsals and works in the costume shop. Being busy helps with the pain..she thinks about it less..and the doctor did prescribe tylenol 3 with codine for her..(but it is hard to think and study with that!)
Now she is just trying to decide when to fit surgery into her schedule..I know..that sounds dumb..but after 18 months of this..whats a few more weeks? She sees the GI on Wednesday & a surgeon on Nov 7. Then we will know what and when they will do something..unless she gets worse in the meantime..
I don't think a doctor can tell if your gallbladder trouble was caused by crash dieting. They seem to have enough trouble just finding out that it isn't working, let alone why...
Good luck with the enzymes...& I would think that a good GI doc would be looking at your family history & WHY you have pancreatitis..isn't the gallbladder a factor in that? Also, sphincter of Oddi..i did some reading on that..
so..lots more researching hours, huh?
Let me know how things go..
Hi, That's really too bad your daughter fell into the crash dieting. How can the doctor tell if her gallbladder problem was caused by crash dieting?
Maybe if she has her gallbladder taken out it will solve her problem. Usually the body adjusts to not having one. I know you're worried that it may make her situation worse. Just wanted to tell you that all 6 of my mom's siblings have had no other problems since the removal of their gallbladders. In fact, I know several other people as well that have had theirs removed and none of them have had any further complications.
Does your daughter's condition affect her so badly that she can't work? My GP seems to think that I should be able to work with this pain(my job is very physically demanding). I can't seem to make him understand how the pain has been affecting my life. I suppose it's because he sees things that are much worse. (Did I mention I am in the process of finding a new GP?)
IBS was the first thing my GP diagnosed me with when I was 21 and yes--he did inform me that IBS was "mostly in your head". I havn't been able to find any relief from the constant "IBS symptoms" no matter what I do. When I went to the first GI, she only ordered me for one test(was normal)and then told me that I should "just hope that it will eventually go away". What kind of thing is that to say to someone who's in so much pain and pleading for any kind of answers?!? That was over a year ago. I'm hoping that the new GI I have will pursue the cause of my pain no matter how much money it's going to cost to get the tests done. I go to see him next Mon. I'm taking my mom with me so maybe with the two of us there we will cover more of the questions. Next step is a CT scan.
Has your daughter ever been to a Naturopathic doctor? I am now considering the possible benefits of going to one. I went to the health food store looking for something to burst my energy but came home with some pancreatic enzyme replacement pills. At this point I will try anything!
Good luck with your next appointment.
Maybe if she has her gallbladder taken out it will solve her problem. Usually the body adjusts to not having one. I know you're worried that it may make her situation worse. Just wanted to tell you that all 6 of my mom's siblings have had no other problems since the removal of their gallbladders. In fact, I know several other people as well that have had theirs removed and none of them have had any further complications.
Does your daughter's condition affect her so badly that she can't work? My GP seems to think that I should be able to work with this pain(my job is very physically demanding). I can't seem to make him understand how the pain has been affecting my life. I suppose it's because he sees things that are much worse. (Did I mention I am in the process of finding a new GP?)
IBS was the first thing my GP diagnosed me with when I was 21 and yes--he did inform me that IBS was "mostly in your head". I havn't been able to find any relief from the constant "IBS symptoms" no matter what I do. When I went to the first GI, she only ordered me for one test(was normal)and then told me that I should "just hope that it will eventually go away". What kind of thing is that to say to someone who's in so much pain and pleading for any kind of answers?!? That was over a year ago. I'm hoping that the new GI I have will pursue the cause of my pain no matter how much money it's going to cost to get the tests done. I go to see him next Mon. I'm taking my mom with me so maybe with the two of us there we will cover more of the questions. Next step is a CT scan.
Has your daughter ever been to a Naturopathic doctor? I am now considering the possible benefits of going to one. I went to the health food store looking for something to burst my energy but came home with some pancreatic enzyme replacement pills. At this point I will try anything!
Good luck with your next appointment.
While researching medical info, I read that one of the causes of gallbladder "sludge" could be "prolonged fasting". My daughter did go through a stage in high school where she was crash dieting, literally starving herself...dropped down to about 95 lbs. She never got to the point of looking sick or skeletal, as she is only 5'1" tall. (eating issues are a LONG story..so I'll just say that she is OK with it now)...anyway...I did a search using "anexoria" and "gallbladder"..& found a site, written by a doctor who believes ( & has sucessfully treated) girls who are diagnosed as being bulemic or anexoric, actually have mal-functioning gallbladders and/or thyroid problems. When my daughter first went to the doc at 17, she was basically told to "chill out"..that she was developing ulcers and needed to better manage her stress. Put on Prevacid & Carafate. Then Aciphex, then we went to the GI specialist...(who tried every tummy med out there)...who even with the severe URQ pain, dismissed her with a diagnosis of IBS after a negative EGD and ultrasound. I now know that once you get the "IBS" label...otherwise known as "nutcase" by some..you might as well find a new GI, they are done with you. Especially if you are 17..
So...that is a long answer to a short question...which comes first, the gallbladder trouble & then not eating??? or Not eating & then gallbladder trouble??? interesting debate...
So...that is a long answer to a short question...which comes first, the gallbladder trouble & then not eating??? or Not eating & then gallbladder trouble??? interesting debate...
So I guess you'll be researching cholecystitis now? I am relieved that your daughter got a diagnosis. At least now she has proof that it's not all in her head right?!?
It was nice of the nurse to tell you the information before the appointment. This will give you the chance to get some research done and ask the doctor some great questions about it. I've had a lot of trouble getting the doctors to answer my questions thoroughly. I almost have to harrass them a little.
About your question--I havn't had any eating disorders. I have had some weight fluctuations over the last couple years, but I was having pain long before the fluctuations happened. I usually weigh around 59kgs and then last year my doctor put me on Dicitel for IBS. While I was taking this medication(all 250 pills)I lost so much weight that I was worried about myself( I was down to 50kgs). Dicitel has many side effects, one of which is the feeling of fullness. I felt full everytime I took one of those little pills. I couldn't believe how skinny I was! My doctor insisted that I keep taking the Dicitel but I chose to take myself off it. Within a couple months I was back at my regular weight.
Are you thinking that maybe your daughter has had some eating problems like this and that it could the cause of the cholecystitis?
I truly hope your daughter's appointment goes well and you find out some more answers. You're doing a great thing by coming on to this forum and searching for help for her. Hang in there gardenmaniac. Sunnyc
It was nice of the nurse to tell you the information before the appointment. This will give you the chance to get some research done and ask the doctor some great questions about it. I've had a lot of trouble getting the doctors to answer my questions thoroughly. I almost have to harrass them a little.
About your question--I havn't had any eating disorders. I have had some weight fluctuations over the last couple years, but I was having pain long before the fluctuations happened. I usually weigh around 59kgs and then last year my doctor put me on Dicitel for IBS. While I was taking this medication(all 250 pills)I lost so much weight that I was worried about myself( I was down to 50kgs). Dicitel has many side effects, one of which is the feeling of fullness. I felt full everytime I took one of those little pills. I couldn't believe how skinny I was! My doctor insisted that I keep taking the Dicitel but I chose to take myself off it. Within a couple months I was back at my regular weight.
Are you thinking that maybe your daughter has had some eating problems like this and that it could the cause of the cholecystitis?
I truly hope your daughter's appointment goes well and you find out some more answers. You're doing a great thing by coming on to this forum and searching for help for her. Hang in there gardenmaniac. Sunnyc
Yes..my Mom had her gallbladder out about 10 years ago..her problem was not stones either..it seems that her gallbladder just "died"..it was all shrivelled up and leathery..then maybe it had stones too, but it was just not even functioning. At the time, she had open surgery as the doc didn't really know what the problem was & the lap. procedure was pretty new.. So far..I have been OK..(I'm 45)
We got the results of my daughter's HIDA scan today...the radiologist said that the delayed fill indicated an inflamed gallbladder and the emptying percentage was 32...also an indication of the gallbladder not functioning well...( his diagnosis was Choleysistitis (??)...we go to see the GI doc next week..his nurse took pity on me & gave me the results over the phone..I have to "pretend" to not know next week..(nice, huh?)
Just a question for you.. Ever have any eating issues? Like crash dieting, anexoria or bulemia? Some of the research I have done indicates gallbladder trouble can result from this..one web site says it's the CAUSE of it...just wondered..
We got the results of my daughter's HIDA scan today...the radiologist said that the delayed fill indicated an inflamed gallbladder and the emptying percentage was 32...also an indication of the gallbladder not functioning well...( his diagnosis was Choleysistitis (??)...we go to see the GI doc next week..his nurse took pity on me & gave me the results over the phone..I have to "pretend" to not know next week..(nice, huh?)
Just a question for you.. Ever have any eating issues? Like crash dieting, anexoria or bulemia? Some of the research I have done indicates gallbladder trouble can result from this..one web site says it's the CAUSE of it...just wondered..
I totally understand how you and your daughter feel. I am 24 and have suffered with a lot of pain and nausia for five years. I've had an Upper GI, abdominal ultrasounds, numerous x-rays, a HIDA scan, Blood tests and most recently an ERCP. I found out that I have pancreatitis but they can't find out what is causing it. They found no stones in my ducts either. I am curious that it could just be my gallbladder acting up on and off. Is there gallbladder disease history in your family? My mother has six siblings and all of them have had their gallbladders taken out. I'm starting to think it's just a good idea to get mine taken out too because the doctors can't find anything in my test results to explain why I'm in so much pain and have so much nausia no matter what I eat. I really hope that your daughter is lucky and they find out what her problem is.
I understand very well how frustrating it can be when people tell you it's all in your head. Just because she doesn't fall into the age catagory for this type of problem doesn't mean she can't have it. Please whatever you do, don't let them tell you it will eventually just go away!
Good luck to you and your daughter. I will be checking your posting to see what's happening and how she's doing.
I understand very well how frustrating it can be when people tell you it's all in your head. Just because she doesn't fall into the age catagory for this type of problem doesn't mean she can't have it. Please whatever you do, don't let them tell you it will eventually just go away!
Good luck to you and your daughter. I will be checking your posting to see what's happening and how she's doing.
If the gallbadder if functioning at a low percentage, it is safe to assume that it needs to be removed. Mine was not detected for almost 2 years and when it was finally removed it was diagnosed as chronic cholecystitis.(chronic gallbladder disease). Although I continue to have moderate to severe pain, leaving the gallbladder in could have resulted in rupture or (as my doctor has advised me) possible cancer in the future. I had no stones and I now need to have the source investigated. I suppose it is possible to have a complete recovery once the gallbladder has been removed, when no stones are present, it was just not my experience. It has taught me to ask more questions next time, and not be made to feel like an overly anxious patient.
HIDA Scan was yesterday..it took over 4 hours as they couldn't get the gallbladder to fill with the radioactive stuff very well, so they gave her morphine, which constricts the ducts out of the gallbladder, so it will fill...then the radioactive stuff was wearing off, so they had to give her more of that...then she drank some Ensure..& they took photos for an hour to monitor the emptying...of course they don't tell you anything..the first guy did as he was an intern & probably hasn't been trained enough on how to evade questions....he seemed to think something was up when it wouldn't fill well..but after meeting with his "supervisor" then he acted like it was no big deal...we might know something by Friday. I watched on the screen during the hour that they took photos & the gallbladder did get smaller, but it was hard to say by how much.
I am concerned when I read questions from others on this board how they still have the same pain after having their gallbladder out..some are even worse..especially if they did not have actual gallstones show up on their tests. I sure do not want an already bad situation to be worse! How do you know what to do????
I am concerned when I read questions from others on this board how they still have the same pain after having their gallbladder out..some are even worse..especially if they did not have actual gallstones show up on their tests. I sure do not want an already bad situation to be worse! How do you know what to do????
As an additional comment, I was one the "unfortunate" few who went through over a year of pain and discomfort with my gallbladder every time I ate ... Bowled me over in pain every time I ate and vomitting was a frequent occurrence. Had every possible test done, including HIDA scan and scope, biopsy, etc. Surgeon finally decided to go in and take a look. Found scarring and adhesions on the gallbladder and took it out. Pathology came back as "chronic acalculous gallbladder" or something like that, not sure of the spelling on that. I never had a gall stone or any obvious signs during any of the tests. But gallbladder was "bad" just the same. Haven't had any attacks of that type since they took it out. It's something to consider !
Hope your daughter gets answers soon.
Hope your daughter gets answers soon.
I've been in the exact situtation as your daughter. I'm 20, and woke up one morning with intense abdominal pain that got worse whenever I ate. I had every blood test and procedure there was, and they all came out normal, except for some reflux from unknown causes. My GI told me to get used to it that maybe if I was lucky, whatever it was would go away.
I went back to my general practitioner and he scheduled me for a hida scan (it had just started being covered by my insurance). Two days after the test, my doctor was scheduling me to have my gallbladder removed. The hidascan is the only test that shows dysfunctioning of the gallbladder, so if that's your daughter's problem, you'll know soon. Good luck!
I went back to my general practitioner and he scheduled me for a hida scan (it had just started being covered by my insurance). Two days after the test, my doctor was scheduling me to have my gallbladder removed. The hidascan is the only test that shows dysfunctioning of the gallbladder, so if that's your daughter's problem, you'll know soon. Good luck!
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