Aa
I need some advice
Hi, I am a 17 year old girl, who has suffered for 5 years with pain and nausea. At first, I had been in pain for about 6 months, before I was told I had gallstones, so I had my gallbladder out. But, I continued having the excruciating pain that was supposed to be from my gallbladder. It has been 2 years since that operation, and I continue with the pain. And the nausea has been the worst. It has gotten so bad in the past year that I am stuck with eating only crackers, and soup. No doctor has found out what it is, and I am at wits end with this. Does anyone know what this could be?
I haven't been feeling much better today, as I still can't eat. I think the nausea I'm feeling now is from not eating though. I just have no appetite at all. And I almost went to the ER today, but I decided against it because I would've had to go to south shore...which is by far the worst hospital ever. I also don't think that I have ever been hypoglycemic, but I am sure it must be aweful. Tomorrow I might try and force myself to eat some saltine crackers or orange sherbet, but not tonight. And I think I might know something that will work to show emails. I am going to use my own email to test it, so if it works just try doing the same thing as me.
xxchrissiexcatastrophexx at hotmail ******* There...I think that works. Won't know until I post it though.
And that must've been horrible, only able to eat certain things. I'm like that now, I can only eat....well nothing right now. But I have been to the ER countless times, and the last time I was there was because I was throwing up, which was no fun at all. All they did was send me for an ultrasound, give me some medicine, and an iv, and send me home. But that's what every ER does in my eyes.
xxchrissiexcatastrophexx at hotmail ******* There...I think that works. Won't know until I post it though.
And that must've been horrible, only able to eat certain things. I'm like that now, I can only eat....well nothing right now. But I have been to the ER countless times, and the last time I was there was because I was throwing up, which was no fun at all. All they did was send me for an ultrasound, give me some medicine, and an iv, and send me home. But that's what every ER does in my eyes.
The way you described yourself as feeling is exactly the way I've been feeling...just extremely weak and no appetite. Yet, like I said before, I have to force myself to eat in order to avoid getting hypoglycemic. I don't know if you've ever felt hypoglycemic before but I used to get it once in awhile long before I was sick w/cp - it's awful. You get dizzy, a feeling of being very "spaced out" and knowing w/o any doubt that your body needs sugar. And sugar in ANY form...it's disgustingly gross but I've even gotten it when due to dieting, I had no cookies or juice or soda (except diet) or anything sweet in the house and actually had to resort to eating a few spoonfuls worth of actual sugar - blech! But, it's like your body needs it NOW. Anyway, if you've ever gotten it you know what I mean and, if not, you will if you ever do get it (which I hope you don't.) Thinking about how I used to get those incidents once in awhile, and since your pancreas runs not only the digestion of food but also your insulin levels, I almost have to wonder if my pancreas was starting to "malfunction" then to a degree.
I hate that I can't send you an email directly here as it won't print them within the body of these msgs. I think the only way to do it is if you click on my username here, it should bring up my profile, and I'll make my email public for awhile so you can see it and then send me an email. It can be done obviously vice versa but since you're still pretty young (compared to my "old lady" 50, lol!) I don't want to do anything that can be perceived as 'weird" by anyone. So, if you click on my username, I'll make my email in my profile public (for awhile as I don't particularly want my email address "out there" for long either what with all the weirdos out there or even just spam or junk mail increasing) But I DO want to give you Dr Sutherland's email address, etc.
The only other way to do it would be for you to post at the PAI web site and I could answer your post because the PAI forum, unlike this one, doesn't block out email addresses in forum posts (unless you're still just 'lurking" there and not yet posting) Otherwise, I don't know any other way to get you the info. so, let me know what you want to do with respect to the above and I'll try to get the info to you that way.
Anyway, I hope you are feeling better today, I, too, hate this weak feeling but at least it's not the pain. So, rest up to try and regain your strength. BTW, when I was sick the ONLY things I could eat were bread products (plain, no butter or anything fatty like pb&J) and nonfat yogurt w/o fruit in it or frozen nonfat yogurt. No foods w/any meat in it at all, not even soup or broth. No veggies, fruits or anything too hard to digest. Just toast, bagels. english muffins, nonfat frozen yogurt and nonfat yogurt. And once in awhile, cereals or soups like tomato with no veggies or anything to do with meats. In fact, ANY meat at all made me the sickest! I lived like that for at least 3-4 years! But, anything to avoid the pain and when feeling alot of pain, I couldn't eat at all which is what they'll do in the hospital except they'll hook you up to IV fluids for nutrition and pain meds. Have you ever had to go to the ER before? Hope not but if you need to try to go to Beth Israel's ER. At least they know what they're doing there.
Anyway, write back when you're feeling better and let me know which way would be best to get Dr Sutherland's info to you ok?
Take best care,
Laura
I hate that I can't send you an email directly here as it won't print them within the body of these msgs. I think the only way to do it is if you click on my username here, it should bring up my profile, and I'll make my email public for awhile so you can see it and then send me an email. It can be done obviously vice versa but since you're still pretty young (compared to my "old lady" 50, lol!) I don't want to do anything that can be perceived as 'weird" by anyone. So, if you click on my username, I'll make my email in my profile public (for awhile as I don't particularly want my email address "out there" for long either what with all the weirdos out there or even just spam or junk mail increasing) But I DO want to give you Dr Sutherland's email address, etc.
The only other way to do it would be for you to post at the PAI web site and I could answer your post because the PAI forum, unlike this one, doesn't block out email addresses in forum posts (unless you're still just 'lurking" there and not yet posting) Otherwise, I don't know any other way to get you the info. so, let me know what you want to do with respect to the above and I'll try to get the info to you that way.
Anyway, I hope you are feeling better today, I, too, hate this weak feeling but at least it's not the pain. So, rest up to try and regain your strength. BTW, when I was sick the ONLY things I could eat were bread products (plain, no butter or anything fatty like pb&J) and nonfat yogurt w/o fruit in it or frozen nonfat yogurt. No foods w/any meat in it at all, not even soup or broth. No veggies, fruits or anything too hard to digest. Just toast, bagels. english muffins, nonfat frozen yogurt and nonfat yogurt. And once in awhile, cereals or soups like tomato with no veggies or anything to do with meats. In fact, ANY meat at all made me the sickest! I lived like that for at least 3-4 years! But, anything to avoid the pain and when feeling alot of pain, I couldn't eat at all which is what they'll do in the hospital except they'll hook you up to IV fluids for nutrition and pain meds. Have you ever had to go to the ER before? Hope not but if you need to try to go to Beth Israel's ER. At least they know what they're doing there.
Anyway, write back when you're feeling better and let me know which way would be best to get Dr Sutherland's info to you ok?
Take best care,
Laura
Ok, and today it isn't much pain, as it is weakness. I haven't been able to eat or drink for 3-4 days. It sort of *****, but nothing I can do about it. I told the doctor I saw the other day about it, and he brushed it off as nothing, and gave me a prescription for levsin. I hate how doctors are sometimes :(
I'm sorry that you have the flu. It must really be aweful, I just got this thing called flu mist so I won't get it, but after I found out that it won't protect me against the stomach flu, and that's the worst one.
Will write more later, just need to go lay down for now.
hope you feel better soon :)
I'm sorry that you have the flu. It must really be aweful, I just got this thing called flu mist so I won't get it, but after I found out that it won't protect me against the stomach flu, and that's the worst one.
Will write more later, just need to go lay down for now.
hope you feel better soon :)
I'm sorry you're in so much pain. I have the flu or something too, and since right now I'm living as a type I diabetic until my islet cells kick in, not eating is wreaking havoc w/my disbetes/blood sugar. There must be some way that I can send you those email addresses for Dr Sutherland but we'll have to do it through private email. Write later ok?
Laura
Laura
The emails didn't show up. Right now I'm in a bit of pain so I can't stay on long, but I will be back on later tonight.
Hi - I'll write more later as I have some things/phonecalls, etc., I need to get done but here are the email addresses for Dr Sutherland. They're both good and I don't know why I have two but I'm sending both if one isn't good or something. Although last I knew they were both good. He does answer email and usually pretty quickly unless he's in surgery in which case he'll answer it later today or tomorrow. But here they are:
***@****; ***@****
Please DO email him for his advice as it'll be very good advice. And later, I'll send along a number of web sites where they talk about his bio, his credentials, etc. I think you'll be very impressed! He's also the most compassionate, caring doctor I've ever met! So, don't be afraid to ask him anything - he'll answer you I promise!!
More later ok?
hugs,
Laura
***@****; ***@****
Please DO email him for his advice as it'll be very good advice. And later, I'll send along a number of web sites where they talk about his bio, his credentials, etc. I think you'll be very impressed! He's also the most compassionate, caring doctor I've ever met! So, don't be afraid to ask him anything - he'll answer you I promise!!
More later ok?
hugs,
Laura
I think I remember taking neurontin at one time. I could've swore I did but I might be wrong. I don't think it agreed with me at all. Yet I was nauseous anyways, so it's hard to tell whether a medicine agreed with me or not. I used to be terrified of medicines at one time, because I had a side effect from a medicine when I was younger.
I will try to get my doctor to give me ativan, but I don't know what he'll say. Actually, I might still have some from a while back, but I don't think I should even dare take them, considering that would've been about 5-6 years ago. And that's what I don't let doctors do, push me around, well I try not to let them anyways.
As for Dr. Sutherland's email, I would like to have it please. And thanks once again for being so kind and helpful :)
I will try to get my doctor to give me ativan, but I don't know what he'll say. Actually, I might still have some from a while back, but I don't think I should even dare take them, considering that would've been about 5-6 years ago. And that's what I don't let doctors do, push me around, well I try not to let them anyways.
As for Dr. Sutherland's email, I would like to have it please. And thanks once again for being so kind and helpful :)
I can't take antidepressants because they all make me feel 'hyperaware" or like my eyes are bulging out of my head. I can't take them at all nor do they help me. A psychiatrist even agreed w/me (which I'm surprised since he could have had me go there just to take my ins $.) In any case, he gave me something called Neurontin (or Gabapentin) which reduced the need for as many Ativans I needed to have as they will need tobe increase as your tolerance increases the longer you're on them.
However, if I were you, I'd stress that the ativan/lorazepam is the only thing that helps you, that it helps w/the nausea (that's a known fact and they know this) and that the anti-depressants ____(fill in the blank) as I don't want to "put words in your mouth." But I wouldn't let them push you around - it's your body and it's your nausea as well. Don't ever forget that..."they're" not the ones dealing with it. They can advise you medically which is fine but again, they're not the ones dealing with it on a daily basis. So, be strong and remember that ok?
Don't forget I'm here for you always as well and if you'd like Dr Sutherland's email address to see what he advises, and he WILL email you back; I'll be happy to give that to you as well. Particularly if this is firmly established as pancreatic illness. However, bear in mind, it took over 3 years for me to get diagnosed as well as what Dr Sutherland says, "sometimes this isn't firmly diagnosed until a biopsy is examined under the microscope."
Stay in touch and I'm here for you - you know that. My promise to myself is that if I can even help one person, in ANY way, then my illness and everything I had to go thru will have been worth it....
Blessings to you,
Laura
However, if I were you, I'd stress that the ativan/lorazepam is the only thing that helps you, that it helps w/the nausea (that's a known fact and they know this) and that the anti-depressants ____(fill in the blank) as I don't want to "put words in your mouth." But I wouldn't let them push you around - it's your body and it's your nausea as well. Don't ever forget that..."they're" not the ones dealing with it. They can advise you medically which is fine but again, they're not the ones dealing with it on a daily basis. So, be strong and remember that ok?
Don't forget I'm here for you always as well and if you'd like Dr Sutherland's email address to see what he advises, and he WILL email you back; I'll be happy to give that to you as well. Particularly if this is firmly established as pancreatic illness. However, bear in mind, it took over 3 years for me to get diagnosed as well as what Dr Sutherland says, "sometimes this isn't firmly diagnosed until a biopsy is examined under the microscope."
Stay in touch and I'm here for you - you know that. My promise to myself is that if I can even help one person, in ANY way, then my illness and everything I had to go thru will have been worth it....
Blessings to you,
Laura
Ya, I can understand how doctors aren't too caring. I have cried in front of a couple of doctors, yet I was a little dramatic saying it'll eventually kill me. But that is only because There are days at a time where I can't eat, and it makes me really upset and stuff. I even have to ask my family to eat in the other room away from me because it upsets me.
I have tried lorazepam, but I doubt that my doctor will give it to me. He is trying to get me on a anti-depressant/anti anxiety called citalopram, but he said it might upset my stomach....so I wouldn't even take the chance. I know for a fact that the other one calms me down a lot, but doctors don't listen to me much. I don't much have a nervous stomach, but I am always nervous and anxious in general. Lately I have even been nervous to go out of my house because I have been feeling so horrible.
I am usually in front of my computer 24-7 as well because I had to quit school because I was constantly going to the nurse, and I just couldn't concentrate on anything because the nausea was all I focused on.
As for the doctor, I don't honestly know his first name, well I don't know how to spell it at least. I think he is at the place you are talking about, but not positive. I'll be so glad when Monday comes around so I can talk to him.
I did check out the group by the way. Was very interesting ^.^
I have tried lorazepam, but I doubt that my doctor will give it to me. He is trying to get me on a anti-depressant/anti anxiety called citalopram, but he said it might upset my stomach....so I wouldn't even take the chance. I know for a fact that the other one calms me down a lot, but doctors don't listen to me much. I don't much have a nervous stomach, but I am always nervous and anxious in general. Lately I have even been nervous to go out of my house because I have been feeling so horrible.
I am usually in front of my computer 24-7 as well because I had to quit school because I was constantly going to the nurse, and I just couldn't concentrate on anything because the nausea was all I focused on.
As for the doctor, I don't honestly know his first name, well I don't know how to spell it at least. I think he is at the place you are talking about, but not positive. I'll be so glad when Monday comes around so I can talk to him.
I did check out the group by the way. Was very interesting ^.^
Thankfully, no that's not the Dr I saw. Is this Dr Suncu you're going to at Harvard Med Ctr? Because that's where the Dr I saw was located. I won't put his name on here as things have a way of "getting around" if you know what I mean. But if you'd mentioned him by name I would have tried to send you a private email to tell you.
Given your history w/having a lap chole and pain/nausea afterwards - to me indicates "early chronic pancreatitis" or another form of pancreatitis and/or SOD rather than just a nervous stomach even though it could theoretically be possible to have pancreatitis, SOD and a nervous stomach I suppose. Although again, I must put in my std disclaimer saying I am not a physician and my suggestions, recommendations, etc., should never be a substitute for the advice of a physician.
If you are nervous or having a nervous stomach, it might be helpful to ask the Dr. about a prescription for ativan or the generic version of it called lorazepam as it also helps considerably w/nausea as well (the doctors know this.) I take it and have for many years (as do many people with pancreatitis - do a search for ativan or lorazepam on the yahoo forum and it will likely come back w/quite a few posts discussing it just fyi.) I have anxiety issues anyway, which understandably, got worse w/my "then" undiagnosed cp.
But you might want to mention that you either think you need something for your anxiety (as it will help w/nausea as well.) Or mention that the phenergan isn't working well for you and explaining your fear of throwing up/anxiety. It couldn't hurt esp. if you feel your Dr is sympathetic to your problems and/or you trust him or her enough to discuss things in detail. If not, then I'd mention it anyway but be more "generic" so to speak in your discussion, i.e., just mentioning anxiety, the phenergan not working well but not going into a "heavy" discussion if you get my drift.
It's unfortunate in this day and age that doctors are either so overloaded w/patients, and/or just aren't very empathetic to their patient's problems that they seemingly don't want to or can't due to time issues; take the time to listen to their patients. I've had several doctors like that and one in particular who I'd been seeing for over 15 years and when things were "hunky dory," everything was fine, but after getting sick, I once started to cry in front of him because of all the confusion of not knowing what was wrong w/me, our family's potential financial "plight," etc., and he just sat there, stone faced, not offering one word or even a gesture of caring, as if to say "are you done yet?" Which, of course, made everything worse as I realized the Dr I'd gone to, that my family went to, didn't give a "you know what" about me. There are many other things he said as well and he is obviously no longer my Dr., but it just amazed me that he could be so seemingly non-caring.
Anyway, sorry to go on so long w/my own stories but I guess I just want to make you aware there are doctors out there to be "careful" about I guess. On the other hand, Dr Pleskow and esp. Dr Freedman at Beth Israel, where you're going, were wonderfully empathetic, caring doctors which was evident on my very first visit! So, I will praise them publicly, as they are exemplary doctors. In fact, the very first visit I had w/Dr Freedman he said to me "Even if this turns out not to be pancreatic disease, I will not drop the ball on you, I will keep searching until we figure this thing out." Very comforting to hear to say the least!
Well, I've written a book again lol! But, again, you're in my thoughts/prayers and let me know how things go! Write anytime...I'm still recovering from the surgery so I'm in front of my computer pretty much 24/7!!
hugs,
Laura
Given your history w/having a lap chole and pain/nausea afterwards - to me indicates "early chronic pancreatitis" or another form of pancreatitis and/or SOD rather than just a nervous stomach even though it could theoretically be possible to have pancreatitis, SOD and a nervous stomach I suppose. Although again, I must put in my std disclaimer saying I am not a physician and my suggestions, recommendations, etc., should never be a substitute for the advice of a physician.
If you are nervous or having a nervous stomach, it might be helpful to ask the Dr. about a prescription for ativan or the generic version of it called lorazepam as it also helps considerably w/nausea as well (the doctors know this.) I take it and have for many years (as do many people with pancreatitis - do a search for ativan or lorazepam on the yahoo forum and it will likely come back w/quite a few posts discussing it just fyi.) I have anxiety issues anyway, which understandably, got worse w/my "then" undiagnosed cp.
But you might want to mention that you either think you need something for your anxiety (as it will help w/nausea as well.) Or mention that the phenergan isn't working well for you and explaining your fear of throwing up/anxiety. It couldn't hurt esp. if you feel your Dr is sympathetic to your problems and/or you trust him or her enough to discuss things in detail. If not, then I'd mention it anyway but be more "generic" so to speak in your discussion, i.e., just mentioning anxiety, the phenergan not working well but not going into a "heavy" discussion if you get my drift.
It's unfortunate in this day and age that doctors are either so overloaded w/patients, and/or just aren't very empathetic to their patient's problems that they seemingly don't want to or can't due to time issues; take the time to listen to their patients. I've had several doctors like that and one in particular who I'd been seeing for over 15 years and when things were "hunky dory," everything was fine, but after getting sick, I once started to cry in front of him because of all the confusion of not knowing what was wrong w/me, our family's potential financial "plight," etc., and he just sat there, stone faced, not offering one word or even a gesture of caring, as if to say "are you done yet?" Which, of course, made everything worse as I realized the Dr I'd gone to, that my family went to, didn't give a "you know what" about me. There are many other things he said as well and he is obviously no longer my Dr., but it just amazed me that he could be so seemingly non-caring.
Anyway, sorry to go on so long w/my own stories but I guess I just want to make you aware there are doctors out there to be "careful" about I guess. On the other hand, Dr Pleskow and esp. Dr Freedman at Beth Israel, where you're going, were wonderfully empathetic, caring doctors which was evident on my very first visit! So, I will praise them publicly, as they are exemplary doctors. In fact, the very first visit I had w/Dr Freedman he said to me "Even if this turns out not to be pancreatic disease, I will not drop the ball on you, I will keep searching until we figure this thing out." Very comforting to hear to say the least!
Well, I've written a book again lol! But, again, you're in my thoughts/prayers and let me know how things go! Write anytime...I'm still recovering from the surgery so I'm in front of my computer pretty much 24/7!!
hugs,
Laura
The one I am going to is a pediatric gastroenterologist named Dr. Suncu (Don't know if I spelled their name right). And I rarely ever vomit as well, actually I hadn't for the 5 years that I had this, except one day when something went wrong, I ate a salad, and it made me really sick. But the fear makes it way worse for me, and makes the nausea worse. Last night I felt so sick, I practically freaked out. But then the phenergan kicked in and I felt better.
And barely anything scares me at this point (besides the fear I already told you about). Also, that must've been really horrible, I hope the doctor I'm seeing monday isn't that one. The one I had been seeing, his name is Dr. Verhave, said that the only thing he can think of is a nervous stomach, and to consider acupuncture. I don't much believe in acupuncture, and with my fear of needles, it doesn't seem like the best thing.
And barely anything scares me at this point (besides the fear I already told you about). Also, that must've been really horrible, I hope the doctor I'm seeing monday isn't that one. The one I had been seeing, his name is Dr. Verhave, said that the only thing he can think of is a nervous stomach, and to consider acupuncture. I don't much believe in acupuncture, and with my fear of needles, it doesn't seem like the best thing.
Hi - I'm not trying to be nosy but would you mind telling me the name of the GI you're going to see on Monday? The only reason I ask is that I had a very bad experience w/a GI at Harvard Med Ctr (of all places - you'd think they'd have nothing but the best there and maybe there are others there who are ok but not this Dr.) I later found out I wasn't the only one who had exactly the same experience w/this doctor. He didn't even examine me, barely skimmed thru my file and pronounced I didn't have cp or any other kind of pancreatitis. This other woman, whose son was the one sick, had exactly the thing happen, except that that very same night her son went into an attack that landed him in the hosital for 3 wks. She said she wanted to tell me beforehand but was afraid that maybe their experience was just unique to them and that maybe I'd get help. But once I posted my story about him, that was when she decided to write me. She was very apologetic, etc., but I assured her that I didn't blame her at all (obviously) and that I could understand why she felt that way initially. Anyway, I just hope it's not him that you're seeing.
As to the pain meds, maybe you could ask about getting the fentanyl pain patch so you don't have to swallow a pill, you just wear the patch and change it every 72 hrs although at one time my dr. had me changing it every 48 hrs as it seemed it lost it's effectiveness after 48 hrs. Just a thought...I rarely, if ever, actually vomit myself because I hate it so much but they also have suppositories for that if you're so nauseated you can't bear to have anything in your stomach or worse, are unable to keep anything down.
It's a terrible thing to have and once diagnosed, I would urge you to contact Dr Sutherland and have it taken out. As you probably know, there is no cure for it and though I hate saying this, it will only get worse and cause more damage to not only your pancreas but possibly to surrounding organs or tissues as well.
Again, I don't want to scare you as you're quite young to be facing this, and I pray it'll turn out to be something else that they can fix, but I just want you to understand that within 5 years, it caused so much damage to my colon due to leaking pancreatic enzymes as well as chronic constipation, that during the surgery to remove my pancreas, they also had to remove 70% of my colon. But, I'm happy to say that all the pancreatic pain is completely gone! Something to keep on the "back burner" as they say in any event. And remember, he is a world renowned doctor, invented the surgery, has been doing them since 1974 and if done early enough in the disease process, the recovery is relatively short as well.
Well, keep in touch and I'm glad to hear you're going to check out the yahoo web site. You'll learn more there than you could from anywhere else and meet some of the most knowledgable and caring people there you could ever hope to meet! Again, stay in touch - I'm here to help you with any questions or concerns you may have ok?
You're in my prayers,
Laura
As to the pain meds, maybe you could ask about getting the fentanyl pain patch so you don't have to swallow a pill, you just wear the patch and change it every 72 hrs although at one time my dr. had me changing it every 48 hrs as it seemed it lost it's effectiveness after 48 hrs. Just a thought...I rarely, if ever, actually vomit myself because I hate it so much but they also have suppositories for that if you're so nauseated you can't bear to have anything in your stomach or worse, are unable to keep anything down.
It's a terrible thing to have and once diagnosed, I would urge you to contact Dr Sutherland and have it taken out. As you probably know, there is no cure for it and though I hate saying this, it will only get worse and cause more damage to not only your pancreas but possibly to surrounding organs or tissues as well.
Again, I don't want to scare you as you're quite young to be facing this, and I pray it'll turn out to be something else that they can fix, but I just want you to understand that within 5 years, it caused so much damage to my colon due to leaking pancreatic enzymes as well as chronic constipation, that during the surgery to remove my pancreas, they also had to remove 70% of my colon. But, I'm happy to say that all the pancreatic pain is completely gone! Something to keep on the "back burner" as they say in any event. And remember, he is a world renowned doctor, invented the surgery, has been doing them since 1974 and if done early enough in the disease process, the recovery is relatively short as well.
Well, keep in touch and I'm glad to hear you're going to check out the yahoo web site. You'll learn more there than you could from anywhere else and meet some of the most knowledgable and caring people there you could ever hope to meet! Again, stay in touch - I'm here to help you with any questions or concerns you may have ok?
You're in my prayers,
Laura
It turns out I have to wait until January to see Dr. Pleskow, which is ok considering he is supposedly really good, I just hate waiting ya know? I do have an appointment this coming Monday with another gastroenterologist, just to see if he can figure it out beforehand.
I did get my gallbladder out using the laprascopic method. I am overweight, but lately have lost around 22 pounds because I can only eat soup and light things like that. But I think being overweight is why I had gotten gallstones and had gotten my gallbladder taken out in the first place.
As for pain meds and such, I don't take any anymore. I have them, but they just make the nausea worse, so I stick to motrin or tylenol, or just wait for the pain to cease all together without them. It seems most foods will trigger pain, so I figure if I stick to soup, I won't have a problem (or I just wish I won't, cuz even then I still get it). Some days the nausea and pain is so bad I can't eat at all. Even though the pain is horrible, I worry about the nausea, simply because I have emetaphobia (dunno if I spelled it right) or the fear of throwing up.
I am starting to think that if and when I do get a diagnosis, it won't be until January at the earliest, maybe even later than that. But I will keep in touch. Thank you for all your info so far :) And I will be checking out that yahoo group asap ^^
I did get my gallbladder out using the laprascopic method. I am overweight, but lately have lost around 22 pounds because I can only eat soup and light things like that. But I think being overweight is why I had gotten gallstones and had gotten my gallbladder taken out in the first place.
As for pain meds and such, I don't take any anymore. I have them, but they just make the nausea worse, so I stick to motrin or tylenol, or just wait for the pain to cease all together without them. It seems most foods will trigger pain, so I figure if I stick to soup, I won't have a problem (or I just wish I won't, cuz even then I still get it). Some days the nausea and pain is so bad I can't eat at all. Even though the pain is horrible, I worry about the nausea, simply because I have emetaphobia (dunno if I spelled it right) or the fear of throwing up.
I am starting to think that if and when I do get a diagnosis, it won't be until January at the earliest, maybe even later than that. But I will keep in touch. Thank you for all your info so far :) And I will be checking out that yahoo group asap ^^
Dr Pleskow is the one who did my endoscopys. He's a more knowledgable/experienced endoscopist apparently than Dr Freedman although Dr Freedman did my first endoscopy. But for the more complicated endoscopic procedures, they'll send you to Dr Pleskow anyway. He may want to do endoscopic nerve blocks which I'll tell you the first one I had done my pain and everything went away for about 6-9 months. The next time I had one I told Dr Pleskow I was so thrilled with the relief from the first one - I wanted to kiss him if he could make the next one last that long. He told me that after the first one they don't usually last much longer than a couple of months if that. He was right, that next one only lasted about a month.
Personally, if you get a diagnosis of pancreatitis, I would refer you to the doctor who invented the surgery I just had and has been doing them since 1974. He recommends that once diagnosed, the earlier you have your pancreas removed the better or you run the risk of narcotic induced hyperalgesia meaning if you're on pain meds too long, your brain will associate no meds with pain and can actually misfire and the synapses gets all screwed up meaning your brain will literally create pain when it gets no meds (unless the weaning process is done very slowly which is what I'm facing right now.) Not to mention a host of other health problems.
The doctor is world renowned, people come from all over the world to see him. He is Dr David Sutherland at the Univ. of Minnesota Hospital. He even answers email (I know! Weird huh? Most doctors don't!) but he will answer any questions you may have. I no longer have ANY pancreatic pain. And they transplant the islet cells (the cells that produce glucose) from your pancreas to your liver so you won't become a type I diabetic. It doesn't happen overnight and sometimes doesn't work but I'd rather deal w/diabetes (as millions do every day) than that awful pain and nausea. I had to retire early from a job I had for 20 years and was bedridden within 3 years from that awful illness.
We don't yet know if that's what you have however so I don't want to scare you or "jump the gun" as they say but I do want you to have the best info available. Tell me, have they removed your gall bladder? I don't remember if you said they had or hadn't. That is where my (and millions of other mostly women) problems started. Esp. when they do it laparascopically.
Of course, after you end up with the same pain you had before your gb is removed - all they (they meaning the medical community at large) do is to change the name of what is really chronic or early chronic pancreatitis to Post Cholecystectomy Syndrome - yes, I remermber telling you this part already. They tell you that's what you have and even say the "loose criteria" for developing that after a laprascopic cholecystectomy (or gb removal surgery) are what they call "The Four F's" (one of which so far you don't qualify for) (1) Female, (2) Fair (complexion), (3) Fat (gee thanks - I'm about 20 lbs overweight, hardly fat!) and (4) Forty+ (in age - the one I know you don't qualify for although they're all pretty stupid and degrading in many ways if you ask me!)
Anyway, sorry can you tell this upsets me? I've been through the ringer w/this illness and would hate anyone else to have to go through what so many are made to suffer. Like I said, they're in the "Flintstone" ages reg. this disease when others are so advanced. But at least you're pointed in the right direction. Dr Pleskow is a good doctor as is Dr Freedman (although I'm partial to Freedman.) Anyway, sorry for my meandering/rambling, it just angers me that the medical community puts people through all this. I used to trust most doctors with anything and I even wanted to be a nurse at one time in my life although I ended up as a financial analyst so life sometimes takes you on a very different journey than you originally imagine it will!
But, if you get a diagnosis or just have questions please let me know as I have alot more info to share with you.
Best wishes and stay in touch ok?
Laura
ps Make sure you visit that yahoo-based online support group/forum. They have excellent databases, links and alot of knowledgable people there too who are more than willing to help as well.
Personally, if you get a diagnosis of pancreatitis, I would refer you to the doctor who invented the surgery I just had and has been doing them since 1974. He recommends that once diagnosed, the earlier you have your pancreas removed the better or you run the risk of narcotic induced hyperalgesia meaning if you're on pain meds too long, your brain will associate no meds with pain and can actually misfire and the synapses gets all screwed up meaning your brain will literally create pain when it gets no meds (unless the weaning process is done very slowly which is what I'm facing right now.) Not to mention a host of other health problems.
The doctor is world renowned, people come from all over the world to see him. He is Dr David Sutherland at the Univ. of Minnesota Hospital. He even answers email (I know! Weird huh? Most doctors don't!) but he will answer any questions you may have. I no longer have ANY pancreatic pain. And they transplant the islet cells (the cells that produce glucose) from your pancreas to your liver so you won't become a type I diabetic. It doesn't happen overnight and sometimes doesn't work but I'd rather deal w/diabetes (as millions do every day) than that awful pain and nausea. I had to retire early from a job I had for 20 years and was bedridden within 3 years from that awful illness.
We don't yet know if that's what you have however so I don't want to scare you or "jump the gun" as they say but I do want you to have the best info available. Tell me, have they removed your gall bladder? I don't remember if you said they had or hadn't. That is where my (and millions of other mostly women) problems started. Esp. when they do it laparascopically.
Of course, after you end up with the same pain you had before your gb is removed - all they (they meaning the medical community at large) do is to change the name of what is really chronic or early chronic pancreatitis to Post Cholecystectomy Syndrome - yes, I remermber telling you this part already. They tell you that's what you have and even say the "loose criteria" for developing that after a laprascopic cholecystectomy (or gb removal surgery) are what they call "The Four F's" (one of which so far you don't qualify for) (1) Female, (2) Fair (complexion), (3) Fat (gee thanks - I'm about 20 lbs overweight, hardly fat!) and (4) Forty+ (in age - the one I know you don't qualify for although they're all pretty stupid and degrading in many ways if you ask me!)
Anyway, sorry can you tell this upsets me? I've been through the ringer w/this illness and would hate anyone else to have to go through what so many are made to suffer. Like I said, they're in the "Flintstone" ages reg. this disease when others are so advanced. But at least you're pointed in the right direction. Dr Pleskow is a good doctor as is Dr Freedman (although I'm partial to Freedman.) Anyway, sorry for my meandering/rambling, it just angers me that the medical community puts people through all this. I used to trust most doctors with anything and I even wanted to be a nurse at one time in my life although I ended up as a financial analyst so life sometimes takes you on a very different journey than you originally imagine it will!
But, if you get a diagnosis or just have questions please let me know as I have alot more info to share with you.
Best wishes and stay in touch ok?
Laura
ps Make sure you visit that yahoo-based online support group/forum. They have excellent databases, links and alot of knowledgable people there too who are more than willing to help as well.
I have prescriptions for both, I sometimes take 2 phenergan instead of 1 because it gets so bad. And I am supposedly going to see this doctor named dr. Pleskow? (don't know if I got it right). I will try for an appointment with Dr. Freedman though. Will the nausea ever go away even if they do find out what it is? Just need to know because it gets really depressing at times, since I've been dealing with this for so long.
Thanks so much for helping me :)
Thanks so much for helping me :)
ps If the nausea is bad ask for phenergan or zofran (or compazine but I had an allergic reaction to compazine in that it did the opposite of what it was supposed to do, i.e., it made me more nauseous.) I prefer phenergan over zofran but that's just a personal preference (maybe.) It seems to work the best for eliminating nausea at least for me.
take care,
Laura
take care,
Laura
I'm so glad to hear that you're going to beth israel. My pancreatologist's name there is Dr Stephen Freedman. So, I don't know if that's who you're seeing but if you end up not liking the doctor you DO see (even though they're a top notch team there imho) ask for an app't. with Dr Freedman. They're all pretty much in the same dept. anyway, so I think you'll be happy with the doctors there. Best wishes and if you have any other questions or concerns, don't hesitate to write to me. I'd be very happy to help in any way I can.
Regards,
Laura
Regards,
Laura
I live in Massachusetts, and I am going to see a doctor at beth israel that is supposedly top doctor. I don't know if they are that type of a specialist, but I was told by my gastroenterologist that if I have anything wrong around where my gallbladder was, that doctor will find it. I had a feeling that it might be sphincter of oddi dysfunction, never thought about pancreatitis though. Thank you for your info. and advice :)
I agree w/MedicofzOz although I want to clarify it a bit. First, let me say that I am not an MD so please do not take my advice over the advice of a qualified (key word) physician.
I had exactly the same thing happen to me after gb surgery, however, imo, I am infuriated that rather than call it what is IS which is either one of several forms of pancreatitis with or without sphincter of oddi dysfunction, the medical community decided to give it a new name Post Cholecystectomy Syndrome. Which simply means, if you're not familiar w/medical terminology, post = after, cholecystectomy = gall bladder surgery, syndrome = a conveniently, ambiguous term imho, Webster's would be "1 : a group of signs and symptoms that occur together and characterize a particular abnormality or condition
2 : a set of concurrent things (as emotions or actions) that usually form an identifiable pattern
In any case, find a pancreatologist NOT just a gastroenterologist unless you have one that stays up-to-date with modern medicine! If you've gone to the ER and been told that you do NOT have pancreatitis because your pancreatic enzymes do not rise (pancreatic enzymes amylase and lipase are often looked at to see if they rise above normal as they are SOMETIMES (but not always if they DON'T rise that is) a sign that a person is having an acute pancreatic attack. It is likely that the ER docs aren't completely up-to-speed w/this VERY poorly understood and relatively rare disease, and do not know that in many cases, particularly, EARLY (they are loathe to use this term for reasons I'll explain later) chronic pancreatitis w/or w/o sphincter of oddi dysfunction aka SOD - the pancreatic enzymes amylase/lipase do NOT rise EVER in many people (I was a prime example of this.) For a good reference on this to print out and bring w/you to the ER, go to the Johns Hopkins web site and do a search for chronic pancreatitis and/or amylase and lipase. They have a very good article on the subject that I printed out to bring to the ER although some doctors will dismiss it anyway because it is coming from you - the patient. Sad but true. This article may also be found in the database, links section of the web site I provided below as well.
The reason I stress seeing a pancreatologist is because it took 3 years of going to gastro aka GI doc after GI doc before I finally saw the pancreatologist in Boston, MA at Beth Israel Hospital to administer the one test no-one else had given me - the secretin stimulation test. The results of this test are basically a numbering system whereby if your number is under 70 (some docs say under 80) you are considered to have pancreatitis. My number was something like 62.
Also, what state do you live in? I may be able to refer you to some good doctors depending on what state you live in...you needn't list the city for privacy factors but state would be helpful for the above reasons. But again, at the yahoo web site I provided below, they have a list of "good" doctors by state.
In any case, many GI docs will not diagnose EARLY chronic pancreatitis as by most standards chronic pancreatitis aka cp won't be diagnosed until enough damage is done to the pancreas that it is visible through imaging studies like CT scans, MRIs, etc. This damage can literally take years to occur until it is visible. Usually after many, many repeated attacks to the pancreas. I did have one dr say something to me that resonated as the truth and has stayed with me until this day although because of the above parameters or limitations he would not diagnose me definitively with cp. Which is problematic if you need a definitive diagnosis in order to retire or to receive social security disability (the $ they take out of your checks when you work but you must convince them that you have a definitive diagnosis in order to receive this money to live on if you're too ill to work. Although, judging by your age that's not yet a problem I don't think. Anyway, this doctor said "EVERY disease process whether it be cancer, pancreatitis, ANY disease - has to begin at the cellular, molecular level. Before it can be seen even by a microscope, it exists at the tiniest, molecular level. So, just because we cannot yet see it w/our vision, even vision enhanced a million times by our current imaging techniques, it does not mean that the disease does not exist." That is such a simple yet true statement and yet doctors will not diagnose pancreatitis just by the pain, etc. They, like the true scientists they are, want what they call "objective, quantifiable evidence" and enough signs and symptoms proven out with this objective evidence in order to make a definitive diagnosis.
Hopefully, #1, this isn't what you have to begin with although your symptoms are exactly what mine were after having my gb removed, and #2 If it is, I hope, unlike me, you will have other signs and symptoms that doctors can go on such as the rising amylase/lipase levels so that they DO have enough objective evidence to go on and don't have to continually play guessing games or have to go from doctor to doctor until you find one who knows what he's talking about in regard to pancreatic illness.
But, please do yourself a favor, even to rule it out - go to see a gastroenterologist who further specializes in pancreatology - a pancreatologist. This will save you years unless you're very lucky, of having to see doctor after doctor. As I said, this disease is very poorly understood by the medical community these days. Probably due to the lack of funding that goes to other well deserved diseases like cancer and heart disease - but compared to those diseases, pancreatitis is in the stone ages when it comes to how well known/understood it is except for the very best specialized, specialists.
I had cp for 3 years before it was definitively diagnosed by the pancreatologist I didn't find until 11/06! Another thing you may want to consider is going to see a pain management specialist doctor. He/she can help with pain meds, etc., if the pain you're having is unbearable. It is best to have it managed by one doctor who is familiar with the latest methodology and medications and/or procedures to help minimize your pain.
I'd like to give you a web site to go to which was very helpful to me (more so than any doctor in terms of the things I learned there from the databases they have and links to relevant web sites as well as a forum similar to this one where the people are wonderfully kind and supportive. It is: http://health.groups.yahoo.com/group/pancreatitis/
You can feel free to click on my name as well and I believe you can email me - I'd be happy to answer any questions you may have. I just had a total pancreatectomy with islet cell transplant as well as a colectomy because the pancreatic enzymes had damaged my colon so (not to scare you!) they had to remove 70% of it. This, after only 5 years with the disease. But, that is too much info for today.
Again, I'd happy to help in any way I can and I would highly recommend and urge you to explore the links, databases and the forum at the web site I provided. I learned more there than I ever could have on my own.
Best wishes to you,
Laura
I had exactly the same thing happen to me after gb surgery, however, imo, I am infuriated that rather than call it what is IS which is either one of several forms of pancreatitis with or without sphincter of oddi dysfunction, the medical community decided to give it a new name Post Cholecystectomy Syndrome. Which simply means, if you're not familiar w/medical terminology, post = after, cholecystectomy = gall bladder surgery, syndrome = a conveniently, ambiguous term imho, Webster's would be "1 : a group of signs and symptoms that occur together and characterize a particular abnormality or condition
2 : a set of concurrent things (as emotions or actions) that usually form an identifiable pattern
In any case, find a pancreatologist NOT just a gastroenterologist unless you have one that stays up-to-date with modern medicine! If you've gone to the ER and been told that you do NOT have pancreatitis because your pancreatic enzymes do not rise (pancreatic enzymes amylase and lipase are often looked at to see if they rise above normal as they are SOMETIMES (but not always if they DON'T rise that is) a sign that a person is having an acute pancreatic attack. It is likely that the ER docs aren't completely up-to-speed w/this VERY poorly understood and relatively rare disease, and do not know that in many cases, particularly, EARLY (they are loathe to use this term for reasons I'll explain later) chronic pancreatitis w/or w/o sphincter of oddi dysfunction aka SOD - the pancreatic enzymes amylase/lipase do NOT rise EVER in many people (I was a prime example of this.) For a good reference on this to print out and bring w/you to the ER, go to the Johns Hopkins web site and do a search for chronic pancreatitis and/or amylase and lipase. They have a very good article on the subject that I printed out to bring to the ER although some doctors will dismiss it anyway because it is coming from you - the patient. Sad but true. This article may also be found in the database, links section of the web site I provided below as well.
The reason I stress seeing a pancreatologist is because it took 3 years of going to gastro aka GI doc after GI doc before I finally saw the pancreatologist in Boston, MA at Beth Israel Hospital to administer the one test no-one else had given me - the secretin stimulation test. The results of this test are basically a numbering system whereby if your number is under 70 (some docs say under 80) you are considered to have pancreatitis. My number was something like 62.
Also, what state do you live in? I may be able to refer you to some good doctors depending on what state you live in...you needn't list the city for privacy factors but state would be helpful for the above reasons. But again, at the yahoo web site I provided below, they have a list of "good" doctors by state.
In any case, many GI docs will not diagnose EARLY chronic pancreatitis as by most standards chronic pancreatitis aka cp won't be diagnosed until enough damage is done to the pancreas that it is visible through imaging studies like CT scans, MRIs, etc. This damage can literally take years to occur until it is visible. Usually after many, many repeated attacks to the pancreas. I did have one dr say something to me that resonated as the truth and has stayed with me until this day although because of the above parameters or limitations he would not diagnose me definitively with cp. Which is problematic if you need a definitive diagnosis in order to retire or to receive social security disability (the $ they take out of your checks when you work but you must convince them that you have a definitive diagnosis in order to receive this money to live on if you're too ill to work. Although, judging by your age that's not yet a problem I don't think. Anyway, this doctor said "EVERY disease process whether it be cancer, pancreatitis, ANY disease - has to begin at the cellular, molecular level. Before it can be seen even by a microscope, it exists at the tiniest, molecular level. So, just because we cannot yet see it w/our vision, even vision enhanced a million times by our current imaging techniques, it does not mean that the disease does not exist." That is such a simple yet true statement and yet doctors will not diagnose pancreatitis just by the pain, etc. They, like the true scientists they are, want what they call "objective, quantifiable evidence" and enough signs and symptoms proven out with this objective evidence in order to make a definitive diagnosis.
Hopefully, #1, this isn't what you have to begin with although your symptoms are exactly what mine were after having my gb removed, and #2 If it is, I hope, unlike me, you will have other signs and symptoms that doctors can go on such as the rising amylase/lipase levels so that they DO have enough objective evidence to go on and don't have to continually play guessing games or have to go from doctor to doctor until you find one who knows what he's talking about in regard to pancreatic illness.
But, please do yourself a favor, even to rule it out - go to see a gastroenterologist who further specializes in pancreatology - a pancreatologist. This will save you years unless you're very lucky, of having to see doctor after doctor. As I said, this disease is very poorly understood by the medical community these days. Probably due to the lack of funding that goes to other well deserved diseases like cancer and heart disease - but compared to those diseases, pancreatitis is in the stone ages when it comes to how well known/understood it is except for the very best specialized, specialists.
I had cp for 3 years before it was definitively diagnosed by the pancreatologist I didn't find until 11/06! Another thing you may want to consider is going to see a pain management specialist doctor. He/she can help with pain meds, etc., if the pain you're having is unbearable. It is best to have it managed by one doctor who is familiar with the latest methodology and medications and/or procedures to help minimize your pain.
I'd like to give you a web site to go to which was very helpful to me (more so than any doctor in terms of the things I learned there from the databases they have and links to relevant web sites as well as a forum similar to this one where the people are wonderfully kind and supportive. It is: http://health.groups.yahoo.com/group/pancreatitis/
You can feel free to click on my name as well and I believe you can email me - I'd be happy to answer any questions you may have. I just had a total pancreatectomy with islet cell transplant as well as a colectomy because the pancreatic enzymes had damaged my colon so (not to scare you!) they had to remove 70% of it. This, after only 5 years with the disease. But, that is too much info for today.
Again, I'd happy to help in any way I can and I would highly recommend and urge you to explore the links, databases and the forum at the web site I provided. I learned more there than I ever could have on my own.
Best wishes to you,
Laura
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