My tests like your come up “normal”. I too have been fortunate that my doctors get it. I just saw a marvelous doctor at Cleveland Clinic in Weston, Florida. He/they use a team approach which I like. It’s comforting when a doctor doesn’t give you test results but hears what you’re saying and sees how you look and feel. Dr Freeman sounds wonderful! Someone I know mentioned a nutritionist to me. She works with vitamins, minerals and herbs. I am leery about this. Has anyone gone this route?
Jackie
Danielle,
I so hear what you are saying. I work with high school kids and have been dealing with chronic pancreatitis. I am so sorry you are having such a terrible time. Is there any way you can call Dr. Freeman’s office and plead your case to get in earlier?
The good news is when you work in the school system you do get short term and long disability. It does provide some income during illness. If you can’t get an earlier appointment, than you may just have to go into the Mayo Clinic via Emergency. Dt. Freeman will see you then… Sometimes you have to use whatever means you can.
As far as the rest of your life, there are many on this support site that have families and a full life- not pain free- but a full life. I know how scary all of this is for you at 27! It will be okay. I know that is hard to believe right now. I am hoping that you have family, friends and/or a significant other to rely on.
I met my husband when I was really ill and had to take a leave of absence. (I had no family. I did have great friends) He was there for me, Danielle. So let me assure you that there are good guys out there that will stand beside you-sick or well.
I was lucky-no question. I was divorced, in my 40’s and very sick. Fortunately, my husband saw beyond my illness. Sorry to be sappy but sometimes we need to hear that there is life beyond our illnesses. I tackled one serious illness only to have CP. It is what it is.
Don’t be scared, honey. I know it is so hard right now. We are all here for you. This support group is an amazing bunch of people that have been there for me and I hope I am there for them. You are in my prayers and we all are standing beside you. I promise!
Love to you,
Jackie
Thanks for the info, Amanda, and the inspiration. We can all use a little of that!
Jackie
I have found when the pain is “bad”- I go on liquids- especially 99% fat free chicken broth. It helps. My doctors also tell me to go on Pedialyte for 2 days. I have done that and it helps. I love meat but it’s a killer…very hard on me! I find raw veggies tough as well…I miss salads. Edys makes these sugar free fruit pops that are wonderful. Jello makes a sugar free,low-fat refrig. puddings that are easy on the gut.
Hoping this helps a little-
Love to you,
Jackie
Jackie
Your message made me smile. I’m 31 and single and dating just seems to be something that I avoid…
Danielle - Your appointment is October 20 or November 5? I would call the office and just tell them you are at the end of your ropes. And, don’t go to Mayo since that isn’t a hospital Dr. Freeman practices at, his hospitals are all in Minneapolis but he performs his procedures at Hennipin County. I can’t tell you how grateful I am for him. The nurse that I usually talked to was Gayle.
I didn’t want to mention that I am feeling so good since I know so many of you are having tough times out there. I had my stent out on Thursday, the bile duct stent fell out on its own. And, other than having a really dry nose on Friday from all the Benadryl they used for sedation - I feel fantastic! I went shopping this morning because since I started eating normal people food, the pounds have been falling off. Strange, huh?? I ate apple sauce all summer long and my weight stayed the same but now that I am eating normal food I am losing weight? I see Dr. Hutchins for a follow up on Monday so I will check in with him to see if he is concerned about that at all.
I have been needing new clothes for so long but when you don’t do anything, why spend the money? So, I got some new clothes that actually fit and tonight I am going to my friends bar (I don’t drink but I love the atmosphere) to watch the Nebraska football game. It is “our” place where we go, my friends, and I haven’t been there since April. I am calling it my Pancreas Liberation Party.
Amanda
Kate,
I went through what you went through last spring. Your reaction to everything was mine as well. Sometimes it’s so hard. You are NOT being a sissy. Sometimes we all just sit and cry as the pain and the tiredness is so draining.
This Support group was a real life saver for me. Once I found it, I did not feel alone anymore. I thank God for all of these people who seem to always be there. What a blessing.
I am praying for you and please know you are NOT alone.
Sending love to you,
Jackie
By the way, my doctors didn’t tell me what to eat either… after a while, your body tells you…
Hi Keke I’m mike12 I know what you are fealing I have been throu it all for 6 years of going to hospital’s and only 1 time when I first went to the e.r did my labs show emulase and lipays throu the roof. But every time after that did my blood show nothing but my body was soo soo sick hang in it will get better let the pain med help don’t let yourself suffer take care and be well Mike12
Hello All,
As I read your replies at work (as a teacher), I cried. You are all so supportive. I am lucky to have all of you. I do have a husband of 6 years who has been there for me 110%. Being that I am only 27, I am freaking out. Some of you mentioned having chronic pancreatitis for a long time and some even when you were a kid. Sossa, did you have children when you were dealing with pancreatitis? I am so scared to get pregnant because I am so unhealthy. I want kids more than anything. Adoption is an option, but I always wanted to experience pregnancy too. I had an okay weekend so my appointment in Minnesota is staying…October 20. I was going to get in earlier, but the nurse said doctor Freeman is really busy. I don’t want him to be rushed because I need him to thoroughly look me over. I am anxious to see if he thinks I have pancreatic divisum and if I have acute or chronic pancreatitis. Once again, thank you everyone for your support. I feel a bit better, but the anxiety of not knowing what is next or how I will feel from one day to another is driving me crazy. Best of luck to all and I’ll let you know what the Doc says in a few weeks.
Danielle
I am very happy for you Amanda! Maybe Dr. Freeman can help me too. I had the stent placement in Milwaukee, WI, but it didn’t work for me. I wonder if Dr. Freeman will try again. Boy, does trying it again scare me because I developed SEVERE pancreatitis the first time.
Joy Joy Joy, I want to tell you that I was at rock bottom before I went to Minneapolis and I had my follow up with my GI doc in Omaha this morning and NO MORE ENZYMES. I don’t want to gloat, but maybe I can give some of you out there a little bit of hope!
They are all pleased (and a little surprised) at my miraculous bounce back. Yesterday, I was on the go all day long and even babysat 3 small children for the afternoon and spent the time running after them outside!!! Saturday night, I enjoyed a Bratwurst! Sunday morning I actually joined my family for brunch, which I usually skipped because I didn’t want to sit around while everyone else ate.
Dr. Freeman has specially designed stents that he uses in his procedures that HE DESIGNED himself to prevent pancreatitis attacks. I was in a lot of pain after the ERCP with manometry, but that was because of the spincter cuts and the gas they use to inflate your abdominal cavity to work. But, no pancreatitis. They told me that my enzymes were lower the day after the ERCP than they were the day before! The biliary stent fell out on its own and they let me keep the pancreatic stent!!! It was removed on Thursday and that all went very smoothly. After a week, the pain was gone and after a few more days, voila - it was a brand new world.
Dr. Freeman has excellent bedside manners and spent a lot of time talking to my mom and I the day before the appointment. The GI doctor that referred me up there has nothing but a long list of reasons why Dr. Freeman is so good. He changed my life and he might change yours too! I was sent up there to specifically have the manometry test that is not done in many places, maybe you haven’t had that done before and it will give you new information? Mine showed that the pressure in my ducts were 7 times the normal amount which was the cause of the pain.
Keke who is on this list as well as had children, so don’t let that get you down.
I have heard many people on hear who have had years of suffering, and that makes me very sad. But, I hope that this new zest for me lasts a long time and I will be able to say that you don’t have to be sick for the rest of your life, some people can be healed.
Amanda
Hi Danielle,
My children are both adopted. After my second major surgery for what was then diagnsosed as acute pancreatitis I decided that I wanted to have children. I did a lot of soul searching to come to that. Back then at that time, I had lost my job, lost my boyfried of 6 years and was really sick. I was 27 years old and basically had spent a year lying on my parents couch resting my pancrease. Back then I do not think a lot was known about pancreatitis. I was repeatedly told that I needed to stop drinking. I never drank. When all the kids in college would go out partying I never did. I always felt horrible afterwards so being told I was an alcoholic when I did not drink always set me off. Anyway after the doctors were finally convinced that resting was not working I had my second surgery. Duct was blocked and I had cysts all over my pancrease.
When I started to feel better I decided that I did want a family. And honestly did what was more important to me, having a family or having the traditional marriage and birth? My boyfriend just left me, so going through the process of trying to meet someone, and what if that didn’t work out, etc…well I decided I could just do it on my own.
So I went about getting a new job, health insurance and estabilishing a home. I thought about giving birth, even went to a few banks, but for various reasons that just weirded me out and besides there was always the risk that it would trigger the pancreatitis to come back. Was it really the idea of carrying a child to term or was it the idea of creating a family? I decided that for me it was really about sharing my life with a child and creating my family even though it would not be traditional. Plus the more research I did, the more signs pointed to adoption. I really felt like there was a higher power helping me come to that decision.
I waited 4 years for my first child to come home and another 5 for the second, don’t anyone tell me that in and of itself isn’t a birthing process! Waiting for your children is an incredibly emmotional experiecne. Some will say that it was incredibly selfish of me to adopt. I think to some degree they are right. My kids may have been better of with someone else OR maybe not. I honestly did not know if the pancreatitis would ever come back. I prayed that it would not. I did not know that I had hereditary pancreatitis until recently. In retrospect I’m glad I did not give birth as there is a 50% chance of passing on the disease to your children.
Having my children is my saving grace. It is my purpose. It is what makes it all worth while. It is what gets me out of bed in the morning when there are days I don’t want to. It is my joy. It is my salvation. It is everything. I can’t imagine my life without my children. I don’t remember my life before my children. Having children is the most difficult and rewarding thing I have ever done. I fear for the day (if) I cannot take care of them. I pray that they will be old enough before anything drastic happens to me (again if). However to cover all the bases, I am taking steps to ensure that they are taken care of and that they know how much I love them. There are no guarentees for anyone, at least I know what my odds are and can be prepared.
Again, you will have to decide what is right for you. For me it was adoption. I am a huge advocate of adoption. It was an incredibly difficult journey and still is. There are ongoing issues for my children both mental and physical, but these issues could have happened if I had given birth. For me all the signs pointed to adoption and I’m glad that I did. People approach me and tell me all the time how lucky my children are and what they don’t get is that I’m the lucky one. My children saved me! They are my world.
Sossa,
Your email was the most inspiring thing I’ve read in a very long time. I salute your courage and your amazing heart!
Jackie
Amanda,
Bravo! How wonderful!!! I am overjoyed for you! It gives the rest of us hope 
Love to you,
Jackie
Hang in there Danielle. We are routing or you!
Jackie
thank you so much! i am bawling my eyes out right now! i can’t believe the love and support of this website family! Do you know if there is any one from oklahoma? All I can say is i will pray for everyone on this board!
tyty
Sossa,
I really appreciate the time you spent writing that reply. I am always searching for advice and support. The past few years have been so hard on me and not many people understand. Sometimes I feel embarrassed. Embarrassed for what, I am not sure. Somehow I feel like this is all my fault. I think it is just the emotional roller coaster. I truly want children too and adoption seems to be the route for me as well. The problem right now is I need to get better. I just don’t want to be selfish and bring children up in my home if I am not well enough to care for them. Maybe my appointment on the 20th will bring new light to things. Amanda talks about having her stent placement and doing great. I had the same procedure done this summer and I felt great too for only about a month and a half. Then all went haywire again. Amanda, this is not going to be the same for you! You are going to do great because I can feel it in my heart. Maybe Dr. Freeman has the magic touch and can help me too. Love you all and thanks for your guidance.
I am thankful everyday for everyone on our site!
Jackie
Dream,
thank you for your kind words, this site has been the best! I just wish i could know how far i am in the CP it has already done damage to the head and around the head of my pan. They also found that i have a fatty liver? I just wonder how hard it is going to be to get on SS (social sec) I want
to help my husband something awful, i almost feel like a burden! I started throwing up really bad on Sep. 1st and i haven’t stopped, it is every day… I have no idea what my triggers are…my labs are messed up and i feel so weak, one day i threw up 18 times…all bile! I wish I could catch a
break…
Anyway i hope you are well today oh, do you know anyone on that site that is in Oklahoma? have a good day!
Kate
Hi, I am new to this site but, when I read your message it put mine issues
in perspective. I have cp just diagnosed and am only having pain and feeling
unwell. I can’t eat a lot of things that I used to eat but, I am not
experiencing what you are. Don’t feel like you are a burden, do the best you
can and that’s what matters. What have the doctors done for you, has it
stopped working since you are throwing up so much? What is your treatment
plan, sorry for all the questions but, I am trying to find out as much as I
can to try and keep this from progressing as much as I can. Do you have any
advice on diet, specifically what foods are better than others and any
alternative treatment. I am already taking Ultrase and Lipitor and have
started a low fat diet. I can’t work anymore outside the home so I have
started the process of applying for disability, probaly won’t get it but at
least it is started. Have you applied? Hang in there, I know that is easier
said than done. I hope you have a good day.
Snowflake
Kate,
I am sorry the vomiting is so bad. I had a vomiting once that was so bad, I had a siezure like episode. My sugar must have been so low and that is why it happened. I haven’t experienced it for months like you are describing though. Do you take anti nausea meds and they are just not working?? How are you staying hydrated?? I pray for you to get that break. Take care.
Thinking of you all and wishing you pain free days,
Keri