Keri,
after my gallbladder was removed I came home in a flare that lasted 2weeks, but I have chronic, so the truth is it may work well for you as we have a friend that flared and since they removed his gallbladder no problems ! So lets just hope it works like that for you, you do not need to go through a major flare minis are bad enough !
Good luck and I will pray for you my dear,
lots of love
julie
Keri,
Good luck, I will be praying that everything turns out well. Keep us posted on how things are going please.
hugs and prayers,
Dream
Hi Keri
My gallbladder was removed years before I had a Pancreatic attack. Hoping removing the gallbladder will help you! Your doctor seems to be going in the right direction!
Jackie
Amanda you are too funny! I loved Wayne’s World and am sure glad we can share a laugh or two!
Jackie
Well, you are correct. The weather has really effected my CP- ugh!
Jackie
So what is the needle? Obviously they can’t leave it in. How does that work?
Vonnie
All of this hits so close to home for me, I don’t even know where to begin. I can’t stop laughing about Waynes world. At least it gave me something to laugh about. Spincter hehe 
I just had tons of labs done and a CT and guess what… everything looks normal.
I live in Colorado and Swedish is on my insurance plan, I’ll call them tomorrow and see if I can get any information. My case is particularly complex (heck arn’t we all 
I’ve only had good luck at the Mayo clinic for stent placement I’ve had a whipple and most Doc’s have trouble doing an ERCP successfully after it.
I have had major issues with University of CO hospital. I was treated like a drug addict, denied pain meds, told to just get over it, and it goes on and on. Also my GI there was basically experimenting on me poking needles into my pancreas during an ERCP and saying they would like to try it again, and again… I know that they have to learn somehow but I’m not willing to be a gunnie pig just for them to treat me like crap. OK enough venting…
I had a great experience at the Mayo in MN. I was treated like a person, and even though they were trying new procedures on me it just felt different. They tried a new stent, but it worked, I’ve been able to eat solid food for over a year, with only one major flare up. They even stuck a needle into my panc as well, they used it to literally blast out “sludge” that was blocking up my duct. Yeah it hurt for a few days after but it was worth it.
Ok enough ranting, I know we all have different experiences, both the good and the bad. But it just helps so much to know that there are other people out there like me, I’m not the only one.
-Patti
Patti,
I just went to dr osborne in wichita ks, and he highly recommends the university of Indiana, a dr. layman? Is anyone familiar with any of this ? Please do let us know about Swedish, dr. osborne did not know anything about it! Thanks
Julie
My doctor has said that the University of Indiana is a very good place to go - I am going to University of Minnesota, but mostly because he knows the doctor I am going to see, I’m enrolled in a clinical study and it is a shorter drive. So, I can tell you that Indiana has some of the equipment for procedures that other places do not which means they invest more time and staff in pancreas work.
I don’t know what this swedish thing is either - I have heard of a swedish massage but if that is all we have to do to feel better I am pretty sure we would all be cured!
Amanda
Thanks amanda about the university of indiana, the swedish thing is a hospital in englewood colo !!!
Patti,
Thank goodness you went to Mayo! Doesn’t it just dazzle you how some doctors and hospitals can be so callous? Everything sounds like things are looking up. I am so glad!
I have my appointment at Cleveland Clinic on Friday for a team approach. I’ll be interested to see how that goes. I’ll let “our group” know. One of the group went for a disability hearing. Why I can’t I remember who? Geez, “if I only had a brain!” (not Wayne’s World but the Wizard of Oz is close enough)… I am so interested in how it all went.
Vonni hope you are doing okay!
Hugs to all!
Jackie
Just wanted to introduce myself, i am a 37, been in pain for 4 years! Mine started right after my gallbladder surgery, I mean in the recovery room! I live in a small town in Oklahoma, I have been told everything you can think of, gas, acid reflux,GERD…and I simply don’t know…
I got really sick Sep. 1st, and finally my new doc, sent me to a GI doc, they ran a CT and they called me, and simply said, I am so sorry but you have CP. I was shocked! I had an ERCP done last year and he said my bile ducts were almost totally blocked, it took him 2 hours to do it. It took an hour to get home from Tulsa, and I just kept telling my friend it felt like my guts were coming out, so i thought it was just the ERCP, did nothing till the next am, called the doc. that did it and he said get to a hospital asap! I don’t remember much but they said they couldn’t count my amalyce it was in the thousands.
i recovered so i thought but at least i have something to treat. but I am now so scared,I felt sooooooo alone till i found this forum. Today i met with my new pain doc, he wants to do a pain block in my back next week, don’t know if it will work or not…don’t know what to do…I am just so tired all the time, the throwing up loads of bile, and they didn;t even tell me what to eat and what not to, I am so confused! i am really scared , have no family close (I have my hubby and my kids)They are grown. i don’t know what normal means anymore, i can’t cook and clean i just lay on the couch and cry, maybe i am being a sissy, i don’t know…
Thanks for reading and well just being here… i am not alone after all, it is just hard to explain to friends… They have me on Ultrace when i eat, Fent. patches , roxicodone for breakthrough pain and Phen. sup. for the nausea. I guess i am just scared and don’t have enough info. Anyway thank you!
Kate
Kate you are most definitely not alone! As far as eating and diet, stay away from fat. My doctors put me on a 30mg fat/day diet. It took awhile but it does help. I’ve also found that staying away from most kinds of meat helps my belly. If you have any other questions please feel free to send me a private message and I will do my best to answer them. Also their are many wonderful very knowledgeable people on this site that can offer you loads of advice and answer your questions as well. welcome to our site.
hugs to you,
Dream
I saw that others have replied too.
Here is a great site I found last month from a link on my doctors site: Www.top5plus5.com
I just got back from Minnesota where they have a group of doctors that work a lot with the pancreas and I know that other CP people have been up there: minnesotaplc.com
Anybody out there from Colorado that has a good GI doc? Family friend has a daughter out there that needs to see one who isn’t going to treat her like a crazy person!
Stay strong everybody! There will be a turning point where everything changes.
Amanda
Hello All,
I am having similar problems. My bouts of pancreatitis started over a year ago. Doctors say I have pancreatic divisum and tried a stent placement…it didn’t help. I have been REALLY not feeling well lately. I went in two days ago to have my enzyme levels checked and they are normal; how does that explain my pain in the upper abdomen? I am going to see Dr. Freeman in Minnesota on October 20th, but I fear I will not make it to that point. I am down to 110 pounds, extremely weak, tired, chills, etc. I am at the point where I have no idea what to do. Do I eat or do I stick with clear liquids? I am still working full-time as a teacher, which doesn’t help anything. I am only 27 years old and need to take in income. Anyone have any words of wisdom? What helps and does anyone worry about losing their pancreas to these recurrent bouts of pancreatitis? In August of this year, doctors said I had not damage, but I really question this? What is my life going to be when I am 30, 40, 50 years old? This is just such a horrible illness because I get few answers and I have no idea how to help myself.
Danielle
I was at such a low point a month ago and then I went to see Dr. Freeman.
9 out of 10 times, my enzyme tests were normal. But, that didn’t stop Dr. Freeman from telling me that there was still something very wrong…
Before I went up, this was my daily food list:
AM: 1hour before my actual alarm, I would take a fenergan.
Morning: apple juice & hot tea, maybe some soy milk. If I drank soy milk, I would take 2 enzyme tabs with it At work in the morning I pushed as many fluids as possible hot tea, water and apple juice.
Lunch: can of V8, apple sauce
Afternoon: more fluids!
Dinner: plain spaghetti, maybe a drop of butter substitute a enzymes.
I know it is super hard right now. If you have been on your job for more than one year, you can qualify for leave under Family Medical Leave Act but it doesn’t mean they have to give you paid leave. As a single girl myself, I understand feeling stressed about money!
Go to minnesotaplc.com and click on about us, then click on news and read the link that says “Dream Team” it talks about Dr. Freeman and maybe it will give you a burst of hope!
Amanda
There are several doctors at Universtiy hospital in Denver. Dr. Chen, Dr. Shaw. I was in the care of Dr. Chen last year. He did a great job. He is not seeing patients right now, so they have transferred me over to Dr. Shaw. I have my first appointment on Wed.
Vonnie
Oh my dear, I have had this crap since I was 39ish, it does not get better or easier, at least I do not know of anyone that is better, it seems that time and flare ups take a huge toll on the entire body and mind, you have to be very mentally strong and try to find something that can preoccupy your mind, for some of us it is taking pain meds and being active, others it might be finding a safe secure place in your home and just resting , reading doing crafts hobbies, but whatever it is that you find cccccccalming to you, that is what you do, many of us have sleepless nights and end up on the computer , I often take pain meds and nausea meds and I clean as much as I can, I figure I hurt so bad anyway and I cannot just lay still, so it is different for everyone, I have lost 80% of my pancreas in surgery due to extreme damage and then they took my spleen and a bowel reconstruction and I became diabetic, I now wear a pump for my insulin as my 20 % that is left is not working. I will just tell you the truth 90% of the time I am totally miserable, it seems to be different for all of us although we all struggle with the same pain and symptoms. The normal reading of your enzymes is to be expected after so many flares that is what happens, mine are always flagged now on lab as they are below normal.
Go figure ! I am now 45 and very tired and no stamina, I now work only 3 hours a day for our school system and I can tell you this year is harder on me then last year, this summer was much worse then last summer, so I just know we have good days and bad days and you just never know when they will be, make sure you have good pain meds and something for nausea and stay HYDRATED ! Please keep in touch as we all understand and support you!
Love to you my dear girl.
julie
Kate,
do not feel alone, we are here feeling your pain mentally and physically, I live in kansas just down the road from you ! I just responded to another email read it qand maybe it will help you,I take promethazine to keep me from puking the bile, it is so bad I just can’t do it, I also take the highest loratabs and take them often, not because I want to, but I want to be comfortable. The block in your back may work, give it a try and let us know, I say nothing ventured nothing gained ! What works for one does not always work for the next as this disease is mysterious and wicked. People do not understand the kind and amount of pain we all endure, so rty oh so hard to mentally strong and just rest keep hydrated eat low fat and soft foods, try to cut down caffeine, although I am not drinking much coffee anymore it kills me, but I do drink lots of diet coke as it seems to be a comfort to me, water is the best ! Kate just pray a lot and when you need to, stop and rest, your entire body takes a beating when we flare up,as warren says treat it like a baby !
Keep the faith and know we are here
julie
I understand your fears about when you get older. I’ve had CP since I was a child. I am now 42 years old. My doctor has told me that my pancrease is 95% gone, but for some odd reason I am not diabetic yet. I am a single mother of two young children. I have the same fears, what will happen next. I don’t get a real answer from my doctors. I don’t think they even now. I am fortunate that I am not in a lot of pain right now (seems to be on some sort of 2 year cycle with me). I’m just happy that for the most part I can still take care of my children. They are the ones that I worry about the most. Hang in there. You are young and based on the fact that I’m 42, you can still have a wonderful productive life. You just need to stay mentally strong right now.