Jane’s Story
It was early January, 1988. I had been feeling fine all day long. We had dinner at home and went to bed as usual. In the middle of the night I woke up and thought my insides were exploding. There is no other way to explain the pain. It was the most intense pain I had ever experienced. I laid in bed trying to figure out what was going on. Finally I woke my husband up and said I needed to go to the hospital. Something had to be terribly wrong. At the time we had four young children so I took myself to the local emergency room. It was about 1 am. Everyone was wonderful to me in the emergency room. They did the normal blood tests and finally did an ultrasound. I had stones in my gall bladder. The physicians decided they would give me pain med and send me home. They arranged an appointment with a surgeon in the next few days. I assume they checked my amylase and lipase but didn’t know enough then to ask.
Ten days later my gall bladder was removed. My surgeon came to visit me in the hospital the next day. The anesthesia had worn off by then and the first thing I told him was that the pain I had before the surgery had not gone away. It was back to the drawing board. I consider myself very lucky. I live in the Boston area. There are many wonderful physicians in this area with several teaching hospitals. It took me six months to find my way to one of these teaching hospitals but as soon as I did I very quickly had a diagnosis: Chronic pancreatitis. I had pancreas divisum . Pancreas divisum is a defect in the ducts to the pancreas. It was suggested I have surgery to repair this defect. By the end of October, 1988 I was undergoing another major surgery.
Don’t forget that I had four young children at home. I had twin girls who were 10, a son 7 and a son 5 . They were and are still my life! I refused to let my medical condition get in the way of my enjoying them. I have a very supportive husband. His mother and father always came to help me and spend time with the children. I also had a wonderful woman, Joana, who was always there.
The surgery seemed to help for a little while but within six months the pain came back. My doctor, Dr. Douglas Pleskow, was incredibly supportive. He would bring my medical information with him to medical meetings, discussing my case with colleagues, hoping to find something that he could do to help. I did what many patients do or think of doing. With Dr. Pleskow’s support I went everywhere for second opinions. One doctor told me once that I had chronic pancreatitis and I needed to just grin and bear it. At the time I found this comment very disturbing but this doctor was really correct.
I now have had CP for over twenty years. The most important thing for me was coming to terms with the pain. I needed to realize that there is no magic pill. There is nothing that is going to eliminate my pain completely. There are things I can do to make it more tolerable but it is not going to go away. I am lucky that this seems to work for me. I still have flares and end up in the hospital but over the years I have still been able to enjoy my children and now my grandchildren. This may sound crazy but it helps me to know that I have experienced the greatest pain possible. I understand what is causing this pain. I think the worst thing about pain is the fear of pain. With the pancreas pain I think I have eliminated that fear.
I have just begun the journey of C.P. I found your comments to be very helpful in understanding.
thank you
I have chronic pancreatitis due to divisium also. Suffered many years with various stomach pain before finally getting a diagnosis. What are you doing for the pain. Pain medicine? I am just coming to terms with the fact I will be this way the rest of my life and so do not want to get addicted to pain pills. Any helpful techniques for pain control would be appreciated. Already on very low fat diet, and pancreatice enzymes. These do help but the pain is still severe.
My name is Suzanne and your story helped me. I have a pancreas divisum and was diagnosed with CP 11 years ago. I have been through major surgeries as well as multiple (too
many to count) ercps. My son was 12 when I was diagnosed and he is 23 yrs. now. I have times in the hospital when it flares up and have a lot of pain. They have talked about doing
a surgery to take out part of pancreas but I am afraid to do this.
Every time something is supposed to make it better, it does not.
Anyway, just never heard of someone with the same thing I have. Good job on your attitude! Suzanne
Jane , about a year or 2 ago I had blood work with elevated liver enzymes, I have been to every kind of doctor, finally a GI sent me for a mri,and it revealed that I have dilation of the distal portion of my bile ducts it was confirmed by MRCP with GAD. I was sent to a specialist and was suppose to get an ERCP,I had to cancel the procedure because I broke my tibia and fibular that was a blessing. after the cast was removed I re taken my blood work and I seemed to level off so I had a EUS instead. The doctors told me I have chronic pancreatitis with a thickening of my gall bladder wall. I never experienced any pain untill the EUS. it must have aggravated my pancreas, 2 wks after the EUS i was in so much pain that I returned to the office of the Dr that preformed the EUS. His staff told me that the DR was on call in the hosp. and to find him there.I went thru the ER and they took about 5 viles of blood and asked if I could be pregnant, I am 47 not menopausal yet and my honey got sniped that it was impossible to be pregnant, well the ER Dr came back and told me there is nothing wrong with me, this is the same Hosp. that I had the EUS in,the Dr said I looked disappointed with his remarks. I was I was bloated had nausea and just an all over feeling of being not well. he gave me a script and sent me on my way,The script was forZOFRAN an anti nausea med for Kemo patients , it did not work, went to pain Dr and he put me on heavy duty pain med. much stronger than when i broke my leg. Today I feel a little better It only took 30 day’s after the EUS, everything I have read never indicates an attack lasting that long, I also am constipated I am living on stool softeners and laxatives, I am sorry for you and I had no signs what so ever, I am glad to find a sight that others understand the pain associated with this illness. what I have read I have a long road of testing ahead of me thanks for sharing your story. Deena
I also have CARP from a pancreatic divisum. Over the years i’ve had I can’t remember how many hospitalizations, surgeries, many “You’re just crazy” reactions, 8 jugular lines, 5 ports, many PICCs, etc. All the ports ended in bad infections (the last was MERSA) except the first. It stenosed my L sub-clavian vein and got me a vein stent and coumadin for life. It also caused my son to be an only child, which has been a bitter pill. Tried adopting- were told no;too sick. I can’t do much because all of the ports ,etc. have ruined my veins – can’t even get a PICC line anymore, and a regular IV can’t run faster than 75ml/hr or I swell up like a balloon. I also have had 2 back surgeries and get steroid spinal injections every 3 months. My house is a filthy wreck, and I don’t have any idea what to do about it.
The pain is bad,the nausea’s bad, but the worst has been total disruption of my life. I am very intelligent and was accepted to grad school in 2 completely different fields (clinical psych-research base, and Classics -Latin,Ancient greek..). I couldn’t finish either of them. The off again on again at who knows what interval has pretty much removed every outside vocation/hobby and friendship from my life. I lost a front tooth (my teeth have disintegrated from so much vomiting and malnutrition) and look like some stereo-typed redneck hick.
I consider myself luckier than most; my husband (an MD) has stuck with me through more than 30 years of this, and my son is simply wonderful. They are currently encouraging me to go professional in my jewelry-making, so that I will be doing SOMETHING. If I hadn’t had their support… I wouldn’t be here.
I’ve been treated by Dr.Peter Cotton at MUSC on several occasions, and he’s a miracle man. I’m losing pancreatic function rapidly and like most, islet cell/pancreatomy has been mentioned,but scares the @$#% out of me. Besides,with the 15-20 gm fat diet I’m on, I don’t see how I could live without sugar! I’ve been in the hospital most of the past 2.5 months, and am going up to MUSC(Charleston,SC) from Naples,FL yet again.
I truly am grateful for all the help and support I’ve gotten, but I still get very angry and depressed-’Why me? Why this?’ I don’t think there will ever be an answer. Kirsten
Thanks for sharing your story. Your positive attitude has truly been an inspiration to me, as I was just diagnosed about 2 months ago with CP -although I believe it started a year ago. I was beginning to believe there’s wasn’t much hope, until I read your story. I wish you all the best, and continued success for many years to come. Barb