Durga(think it was her) has come on here and suggested coconut water. She says it is packed full of nutrition and easy on the tummy. I’m not sure of where to find it (except a websearch), but if you PM her I’m sure that she can give you more details about it. I hope you all are having a better day today.
hugs to all,
Dream
Having vomiting episodes since Sept 1 sounds terrible!!
My GI doctor is in Omaha which is 1 hour away from me. But, on occasions when I was sick with diarrhea and vomiting I would go see my Internal Med doctor (she is the one who originally diagnosed the problem!) who keeps in close contact with my GI doc. She would have me into the office and take a blood test to make sure my dehydration wasn’t to severe, check my liver measures and enzymes (which were rarely elevated). But, even if everything showed normal, she would send me over for outpatient hydration to one of the hospitals. I would be there for a couple hours or more depending on what amount we thought we needed, usually 200-300 mL. And, when I got done I would always feel a lot better, just helps you feel a little more human.
While I have good insurance, this was much less expensive than inpatient treatment and usually only ran around $150 TOTAL expense. Plus, being able to not stay in a hospital overnight was fabulous. I hate having to tell someone when I have gone to the bathroom!! And don’t get me started on some of the crazy roommates I have had when I haven’t gotten a private room!
Having doctors who care enough to know that something is wrong even when the numbers on the labs say there isn’t is sooooo important in our cases. In reading some of the emails over the last couple of days, I have been thinking back to what someone told me when this all started a few years ago for me.
My internist admitted me to the hospital after a lab showed my enzymes were elevated. Up until that point, I had gone to the ER and had been treated like a freak. Going to Dr. Newell that day instead of the ER changed my life! She had been my doctor for quite a while before that. The GI doc that saw me on rotation at the hospital told me there was nothing wrong with my pancreas after the ultrasound and CT scan didn’t show him anything. He said that the lab must have been incorrect or it was because I am a drinker. I have NEVER been a drinker - I grew up with an alcoholic parent!
After discharge, a nurse from the GI docs office called me to schedule a follow-up for SIX MONTHS later. I was so upset, and she said, “Well, there isn’t anything wrong with you so we can’t fit you in before that.” That day at work, I was working with a board member who knew my situation and he said, “If you don’t like what you are hearing from a doctor, fire them and find yourself a new one.” So, when the nurse tried to call me again the next day, I said I didn’t want to see the doctor and I was going to find a different one. I called Dr. Newell and she agreed with me AND followed up with the GI doctor to tell him that she was disappointed in my treatment.
Dr. Newell let me know that she had a friend from med school headed back to Nebraska who had just finished a fellowship in pancreatic diseases. His first appointments wouldn’t be for a month but we both agreed that it was the best option. I was Dr. Hutchins second appointment in Nebraska at the Med Center and at our first appointment he said that he felt the manometry test would be the test he would want to run but they weren’t doing that test at UNMC yet and it is done in conjunction with an ERCP which they are reluctant to do on women in my age group because we have a high risk of getting a post procedure pancreatitis attack (Keri and I are close in age).
He took very good care of me and we tried changing my diet, enzymes, etc. for several months. This spring we knew it was time to go for the manometry. That is when he started working with Dr. Freeman to get me admitted to the MRCP with secretin clinical study and schedule the ERCP with manometry.
side note: the clinical study MRCP was fantastic!! First time I have had a test that didn’t make me sick. I actually felt GREAT afterwards. This is a road test of an MRI without making you swallow some icky stuff. I usually ended up throwing that stuff up afterwards!!! The next day was the ERCP with manometry which finally gave me ANSWERS. And, while I was in a lot of pain for about a week - I didn’t get a pancreatitis attack!!
Funny thing, since I have been feeling better, I have shrunk. I haven’t lost a dramatic amount of weight but I am wearing 2 sizes smaller than what I did before. I am wondering if I was just severely bloated for the last couple of years? Luckily, I had a few pairs of pants in my closet that I was hoping to be able to wear again. But, talk about a BONUS!! No pain, no nausea, no diarrhea, able to eat anything I want and I am getting my figure back?!?! AWESOME.
Love you all bunches and I wish everyone was feeling as good as I am.
Amanda
Snowflake,
I’m sorry you have to be here but welcome. I am told by others that if you are turned down by disability you can appeal and that usually helps.
Jackie
Hi,
thanks for the welcome and the advice about appealing if I am turned down I will appeal. I actually started the disability claim due to Fibromyalgia, but now I am so sick with CP that I added it. If anyone can give me advice on the best things to do and not to do with CP I would greatly appreciate it. Also can anyone tell me if I do everything the docs are telling me then, what is the rate of progression with this disease? Also, (sorry to go on and on), but all the docs and info say this comes from alcohol abuse, but I rarely ever have a drink maybe once a month or every other month, so what could be causing this? I do have high cholesterol and am being treated for it and the doc says he normally doesn’t see triglyceride related pancreatitis except up into the 1,000’s mine has never been over 200, so any ideal how this came about. I sorry for asking so many questions I am new to this and I am not getting a lot of advice on things concerning this.
Thanks for listening.
Snow Flake
Sorry I haven’t seen the whole conversation are coconut water and coconut pops good for pancreatitis?
I too have fibromylgia(?) which is an autoimmune disorder. I was just diagnosed as having Autoimmune Pancreatitis (AIP). It is rarer form of CP, but it does happen. It is not always alcohol that causes it. You also have idiopathic pancreatitis (which means they don’t know why it happened) and you have the heredity type CP and birth defect CP. I’m probably not using the correct terms for the other types as I mostly googled the AIP type. Mention to your GI doc about the AIP type.
Take care.
Ande.
Snow Flake,
I too have CP and am not an alcoholic- My doctors are not sure why I have it but they did tell me that it seems I was born with an irregular pancreas. I am 58 and they just found this out? Geez! I suffer from the pain and nausea like everyone else. The doctors are doing a procedure nest week to see what is going on now- Not sure what else to tell you. It seems as if until it gets really grave there is nothing we can do-
Jackie
Thanks for your response. Like you, my enzyme levels have never been up. The one tell tell sign besides the pain and weight loss was the color of my stools which got better after being on enzymes on 2 different occasions and of course the response to eating foods. That was a good ideal about finding a GI who specializes in the pancreas, thanks I am going to do that. Hope you and everyone else has a good day today.
Snow Flake
Keke,
I hear you...bloodwork normal. Mine too. That is when they told me that patients with the "normal" bloodwork usually have a hard time. Have you asked your specialist about the possibility that you have "divisim" because it could explain a lot. Good luck. let me know. Sharon
I have never heard of autoimmune pancreatitis what test do my docs need to do to see if that could be a possibility? Is it just blood work? I don’t think I have hereditary CP because I have a sister who has chronic pancreatitis but, no one on either side of our family before us has had this. I will google the AIP type. Thanks for the reply and info. This forum and the ones who reply have been a real help and encouragement.
Thanks
Snow Flake
Hi everyone!! I’m new here but not new to CP. was finally diagnosed in 1986 after a lifetime of symptoms via ERCP, I also had a Whipple in 1994 which helped somewhat for a few years, then it was back to the usual routine of pain , nausea & vomiting!!my enzymes only elevated once, since that 1 time when my lipase was greater than 20,000, they havent elevated. Between the chronicity; of the disease & the Whipple they will NEVER rise again. This doesn’t mean we are not having an acute attack. This is a classic sign with CP! Any decent doc will know that but unfortunately, most don’t.
I’m in the hospital now with an acute flare waiting to see a new specialist which won’t be until at least Monday. I hope u all had a decent 4th w/ o too much pain!!
Sandy
Amanda,
I have been diagnosed by two doctors with Chronic Pancreatitis. I have another doctor that does the lab thing like you experience and says it’s not. I too suffer as you do and we all seem to. Some of us really go through the mill with this illness. I have an appointment at Cleveland Clinic-Florida on Monday as I am told they use a team approach to pancreatitis and pain management. Hoping we can all get on the same page! I am beginning to understand how frustrating this disease it and how elusive it can be to doctors…certainly NOT to us! What has helped me most-especially during those painful days and nights- it this support group. It helps us talk it out,talk to each other and to know we’re not alone. I can’t begin to say how grateful I am for everyone’s caring.
I don’t have kids to worry about but I do work with them- high school. Some morning I just want to curl up, take a pill and go back to bed…but I suck it up and go to school. Somehow, we all get through. I guess if I didn’t have the kids depending on me, I would be in bed a lot. For me, it’s better to move.
I am wondering if anyone seems to be gaining weight due to lack of metabolizing the food. I eat very little or what I can and seem to be gaining weight. Most people seem to lose weight. The strangeness of this disease.
I wish you a pain free day and night and hope that it helps to know I have the same ups and downs at the lab
Love to you,
Jackie
Hello,
thought I would get in on this one too, I really hate it when my blood work comes back normal (except platelet counts)! I am diagnosed with Acute Recurrent too, it is so darn frustrating. My daughter is 23 and on her own so I too can rest whenever needed. Keke have you thought about bring in a babysitter a couple times a week? that would help you out a lot! Have either one of you ever had a complete pancreatitis blood panel done? WOW let me tell you if you don’t have good insurance don’t do it, I got my bill for the work up it was 2,980.00, haven’t gotten any results yet! there were at least 25 different panels ran???
Amanda, I was going to ask you about the pancreas show and if you know when it will air? I know you mentioned something before about getting together and watching it with family and friends, so let me know if you would or if you know when ok…Thanks I have to ask do any of you have cramping in the ovarian area? I don’t even have ovaries or uterus anymore, but man have I been having such pain. I am wondering if it’s from not having normal bowel movements, or having loose stools (very yellow)??? Ok I have rambled on long enough, so I want to say hope you have a pain free evening/day. PS Amanda I got a card from Grant last time I was there so I have his email address 
Ok good night.
With all my love and thoughts…
Barb
Amanda,
I had an EUS not too long ago myself and the doctor told me the same thing, that it was “text book perfect”, my labs have also came back normal-they have almost been normal as well. My GI doc said that he wasn’t sure why I was still having so much pain and that the nausea was probably due to all the pain meds that I have to take just to keep it at a tolerable level. He said whatever was wrong with me has nothing to do with my pancreas and released my care back to my primary doctor. I’ve had a few ERCP’s with the stents put in and removed and the first one wasn’t too bad (they only left the stents in for a couple of days then removed them), the second one was a worse-they left the stents in for about 3-4 weeks. I was absolutely miserable until they were removed. But it seemed to work, so far my stents have stayed open.
I will keep u in my prayers and hope that all turns out well and they discover what the problem is and can at least do something for it.
hugs and prayers,
Dream
Hi Amanda,
I wanted to let you know that Hutchins did a EUS on me in May of this year, the only thing that he said was I had a little inflammation in the tail of the pancreas? whatever that was suppose to tell me??? I also had a MRCP/MRI that came back pretty normal so I don’t understand why all of these test come back “normal” yes it is frustrating as hell!!! I can relate to everyone here as well! There are times that I only eat once a day so don’t get all the enzymes that I should, but you wouldn’t think that would be causing flare ups? If I don’t eat then I have NO reason to take the enzymes right? Oh I don’t mean to come off dumb, but what the heck is sphincterotomy?
I have seen that word on a lot of my test that come back? I think I told you that my Oncologist is having me get a second opinion didn’t I? I will go to Omaha to see doctor Maness, have you ever seen anyone in the transplant building? makes me a little nervous! It’s all because they want to take my spleen out in hopes that my platelets will go up and stay up. I have only hit a high of 70,000 in a yr. and 1/2…Ok thanks for letting me know about the t.v. episode…I will check in early next week…Hope you feeling better…
Big Hugs With Love,
Barb 
Thank you all for your responses.
Just to fill you all in…
I have had 3 diagnosed attacks of acute pancreatitis complete with a 3 day, and 6+2 day stay in 2 different hospitals. My worst attack was Nov. of 2007. I had serious symptoms until Feb of 2008 then occasional symptoms with what I call minor flares. I have had CT scans, MRCP’s, EUS/EGD’s, 3 or 4 ultrasounds and a nuclear thing that checked for gallbladder function(HIDA I think) . They did see the inflammed mid body pancreas at the height of my attack. But as far as my most recent MRCP and EUS, they found 1-2 markers for chronic (not enough to diagnose) and my biopsy of the lining of the duodenum showed an abnormality but they said it was nothing. They ruled out Sphincter of Oodi, cancer, Celiac, narrow ducts, gallbladder/stones, autoimmune cp, EVERYTHING!!! Yet I am still having these flares. Like I said before, I don’t want to be sick, I just wish they would find something to treat, ya know??? I am a pretty upbeat person and things don’t get me down too easily, but I just want to know what I am dealing with so I can try to manage it.
Amanda,
No, I haven’t had a ERCP. They told me in Jan 2008 at my last EUS that if I have another serious attack they would do it then. To be honest, I am scared to do it for fear of a severe attack. I just don’t want to make things worse than they already are, ya know? I do hope your procedure goes well. I just sometimes feel like they don’t believe how bad it can get.
I will update on Monday after I see the Pancreatic doc.
Thanks,
Keri
Keke,
We all sound like these doctors are spinning our wheels. We know and understand our bodies. We know what it is! I am pretty upbeat too but this stuff can make you crazy! I am going to Cleveland Clinic Monday so we will both have to report back to each other and our buddies on this site.
Hoping we’ll finally get doctors that get it!
Hugs to you,
Jackie
Hey everybody,
I’m sorry to hear that your are having such a rough time.
I have had many many ERCPs. I spent all last year in and out of stent placement and removal procedures. I had my last one in Jan. of this year.
They do work to open the duct. It is not an easy road, but if you rest a lot, try not to over exert and east easily digestible foods you can do it. Try to find a product that has lots of food stuffs to boost your system. What I mean by that is a powdered veggie/fruit product that you can mix with juice. Drink it once a day. I used Purity Products products. I believe it is what kept me going last year. I’m sure there are others out there.
Doctors can seem to be insensitive at times. A lot of doctors try to be cautious, especially with the pancreas. I don’t know this for sure because I’ve never discussed this with my GI, but I get the sense that there is a protocol that they follow regarding the number of procedures that are done. Some of that is dictated by the insurance companies. (I wonder how up-to-date their information is?)
My husband’s doctor is going out of practicing family medicine. He told my husband that at first the insurance companies buried him up to his waist, then up to his chest. When the sand reached his neck he decided to get out. He will be some kind of a hospital doctor now. I know of another doctor that won’t even deal with the insurance companies. You pay him and that’s it.
I know we get frustrated with our doctor’s, but they get that way too. I know that doesn’t help us much. There definitely needs to be some changes made in the insurance/doctor/patient relations.
This is such a complex issue.
Having said all of that please know that I am on your side in all of this. If you have to change doctors do it. Sometimes I think ours don’t listen, or are overwhelmed by what we tell them.
Anyway, enough babbling on my part.
Keep the Faith, Lean on God and know that others are praying for you,
Vonnie
Thanks for your reply.
Its amazing how all the doctors just assume up front that it must be from alcoholism until you tell them you have hardly drank any alcohol. I could tell one doc didn’t believe me, So I guess I will stop worrying about what caused it and do my best for the future.
I hope your procedure goes well and hopefully they will be able to tell you
something after the procedure.
Take Care.
Snow Flake
If you are throwing up bile, you need to have your bile duct checked. It could be blocked. That has happened to me in the past. You need to insist that this be done.
Vonnie