My name is kelly and I’m from the bay area…I’ve been living with acute recurring pancreatitis for the last year and few months… they are now starting to think it may have become chronic… i had kept myself in high spirits for a long time… but now I’m starting to feel so very alone… so i started searching the web and found this site… id love someone to talk to and share stories and advice with… so please feel free to message me… thanks
~kelly
Hey Kelly,
Just wanted to welcome you here, although I wish you didn’t have to seek out something like this. I have been acute recurrant for 3 years. I have had 3 “confirmmed” attacks when my enzymes actually registered high but I have had MANY attacks when they don’t really think it is an attack but I know that it is. I have had every test in the book with the exception of the ERCP. They find one annomoly here and one there but nothing that confirms anything. I actually have a call into my panc. specialist to get the ERCP scheduled, they will be chacking the pressures of my ducts. Last month they removed my gall bladder to see if that would help- it didn’t. So I am back to where I was before.
I know this can be sooooo frustrating and scary. I am a busy homeschooling mommy and sometimes this ugly disease can get ya down. But we try to find the “great” out of every day so life is still a special gift. Keep your chin up.
What treatment have you had??
Take care-wishing you pain free days ahead!
Keri
Kelly,
Welcome to careplace. This is a wonderful site for just what your looking for. I have been saved on more than one occasion because of this place. It is full of kind and caring people who understand fully what we are going through. I was told by a doctor in St. Louis, MO that this condition is actually rare, that only about 2% of the world population have this condition. They follow that up with that the majority of the cases are here in the USA so it might seem more common than we think. They are still trying to figure this one out unfortunately. I am one of the many that they don’t have an answer for when asked why I have this and how did it occur. We follow their advice, diets, medications, etc. but still there will be occasional flare ups for some. Don’t lose hope, they are doing more research and learning more about it every day. I have every faith that one day there will be more than just treatments for us, but an actual cure. I’m so sorry that you have this horrible condition, it is not an easy one to live with by any means, but at the same time it can at least be treated. If you have any questions please feel free to ask them, I might not be able to answer them but more than likely some one on here can. I will remember you in my prayers.
hugs to all,
Dream
Keri - so glad to hear that you are going to scheduled your ERCP with
manometry…it was the test that finally gave me some answers.
Kelly -Living with pancreatic problems is rough so this board is great. We
don’t want to tell regular people about how we had a bad bout of diarrhea or
vomiting…but around here it is okay. What criteria are they using to say
that your pancreatitis is now chronic instead of acute? There are specific
reasons for it to be classified as chronic so I hope your doctors have told
you why. It seems like sometimes it is something they throw into the mix
because they can’t figure it out. If your doctors can’t figure it out, then
you find new ones. No doctor has the right to tell you nothing is wrong with
you.
I have acute recurrent, and in September they found out it is caused by high
pressure in my pancreatic duct because it is just too small!! They made some
cuts and I have been feeling really great, except when I forget and indulge
in something that is really fatty. The key for me was having doctors that
cared enough to a) not put me through any tests that they felt would be
unnecessary or make me sick b) my first GI referral was terrible. He said
nothing was wrong with me. I told my internist that wasn’t go to work, she
found me someone else. c) they always treated my symptoms as “real” even
when my enzymes weren’t elevated on my tests.
In addition, both of them were very responsive any time that I needed them.
My GI doctor is available by email. My internist will fit me in anyway she
can and if I tell her that I need some fluids to get rehydrated, she sends
me over for out patient fluids - even if my labs don’t show anything. And,
the two of them keep in close contact too regarding my case. Of course, with
FMLA - they have both provided information necessary to make sure that I
have eligible leave from work as needed. (And, I have had to learn a lot
about FMLA on my own so if anyone has questions, let me know…)
It is still hard. Earlier this week, I was an hour late for work because I
just could not leave my bathroom yet. I still have FMLA status even though I
have been feeling great - but the mornings are the worse. At least I don’t
feel nausea EVERY morning like I did before, but there are some mornings
that I am scared to get farther than 5 feet from the toilet!!
Extra tip for EVERYBODY - the last time I was in the hospital, bad
diarrhea and crappy toilet paper…if you know you are going to be in the
hospital, pack some of your good stuff to take with you, it makes life so
much better 
That stuff does not work great for the stuff we have coming
out of us!
Amanda
Kelly,
You are NOT alone! This group is so supportive and caring. I felt that way
too when I was first diagnosed. Thank goodness for this wonderful group of
gals that bless my life. When I was so scared last spring (when diagnosed
with chronic). I read a lot and asked lots of questions right here-
Someone had an answer for me. Unfortunately, we are all in this together…
I send you a big hug!
Jackie
Kelly
Welcome to Careplace. Feel free to bounce anything off any of us. We are all quite knowledgable in many areas of pancreatitis, both acute recurrent, and chronic. Even if you just need a sounding board, feel free. I am certain at least one of us has been through what you may be experiencing so PLEASE let us help. My forte happens to be pharmaceuticals and EUS so feel free to contact me at home at tbrown719@sbcglobal.net (this goes for everyone). WRT pharmaceuticals - Amanda, have you tried some sort of antidiarrheal? I’m not talking OTC Loperamide, I am talking Lomotil or Paragoric. I actually got great relief from Lotronex, which is very hard to get but worth the extra effort if your doc can do it.
Good luck to all and wishes for pain free days and nights (nights have been especially bad for me as I now have to use my feeding tube through the night).
Love and hugs
Teresa
Amanda,
You give such good advise! So true about the toilet paper. My doctors
diagnosed me at chronic. I actually think I,like you, am acute recurrent. I
don’t show up on tests either…
The bottom line for all of us it’s a painful and tough disease.
Had a pretty rough day but I made it through, thank goodness. …
Has anyone heard from Janelle? How is she doing? I think of her daily…
Kelly welcome to our group. I am so sorry you are here but we all rally
around each other so you are in the right place!
Keri, when is your test?
Hugs to all
Jackie
OhioGirl,
I have had recurrent pancreatitis for about 1.5 years. I have not idea what is going on with my body. No one seems to give me any answers. They all say everything is fine inside of me. I have had an MRCP, MRI, CAT scan, ERCP, stent placement, Upper GI, and Lower GI to name a few. The only test I can think of that I haven’t had is a colonoscopy. Not sure if that would tell me anything. Have a great day!
Hello Everyone,
I went to Minnesota to see Dr. Freeman. I was happy because there was no damage to my pancreas and everything looked great; but the problems still exist!? I had a bad, bad flare this past week. My numbers were over 20,000. YIKES. I am a teacher and a wife with little family support. I am going crazy because I just want an answer or a bit of help on what to do. Has anyone heard that birth control could cause pancreatitis? Is anyone here on bc or have they ever been? Dr. Freeman and my GI here in Wisconsin want to test this theory. I am not so positive about this. I so badly want to feel good and start a family. I am not sure this will ever happen the way I am going. Once again, I am only 27 years old and I feel like I am 80. Thanks for letting me vent.
Danielle
Hello everyone,
DD1 I know what you are going through!! I have terrible attacks the past couple nights… Although, My levels are completely normal. I have heard that birthcontrol can be a cause of pancreatitis, I am on yazmin, and I get so nauseated now when i take it and i have pain but i have to take it because i am not ready to have children yet. also it regulates my periods, but i have chronic pancreatitis, and I have noticed ever since i started have pancreatitis and its beginning to get worse i don’t have much periods at all. I was told by my GI that once you have chronic pancreatitis or reacuurent your periods can get very light to a point where you don’thave one at all. I am almost there. Also, what i was saying was if you look on the birthcontrol papers/box it will say you can develop pancreatitis!!! i don’t know if that was the cause of mine because mine is idopathic but, I would;ve thought IF my birthcontrol was the underlining cause you would think i would have developed pancreatitis before now because i have been on this birthcontrol for 6 years.
Ohiogirl,
How interesting?? I have been on birth control for almost 12 years! I am not sure if this is the culprit, I sure hope so. My periods have been really light too. I have noticed clotting. What is the reason for this? Does the pancreatitis cause this irregular bleeding or is there an underlying cause? I wish we had more answers. Thanks for your support!
Danielle
I don’t know… They say that in most cases if you have reaccurent or Chronic you normally have endometriosis with it. So i am assuming it could be from that! I am not saying you have that but i am pretty sure i do because I have had ALOT of pelvic pain for the last year but never been checked out because i am going to have the islet pancreas transplant in MN in 28 days so maybe he will be able to tell me something!! I hope so… How long have you had pancreatitis???
Yeah i know all about the birth control thing thats what made my really big attack so horrible… needless to say i stopped taking it… my periods are irregular but oh well id rather deal with that then be in even more pain…
harslp,
I hope you do go, i have finally got all my answers from them,
here is about the islet transplant
What to Expect
During a pancreatectomy and auto islet transplant, surgeons remove the patient’s pancreas. Then, they isolate the islets from the pancreas and infuse the islets back into the patient’s portal vein in the liver. The islets lodge in the liver or spleen and start producing insulin.
About half of patients who have this procedure do not need to take insulin. Our experience indicates that if the patient has had previous surgery on the head or tail of the pancreas, they are more likely to need to take insulin shots after the pancreatectomy and auto islet transplant.
Because the patient’s own islets are used, they do not need to take immunosuppressive medications after surgery.
Top of page
Outcomes
Our most recent results, which were presented at the 2005 annual Clinical Congress of the American College of Surgeons, indicate that a pancreatectomy and auto islet transplant can provide significant pain relief to most patients with chronic pancreatitis. In a study of 140 patients who had undergone pancreatectomy for pain associated with chronic pancreatitis, about 63% of patients had complete pain relief and 22% had partial pain relief. The remaining 15% of patients indicated that they had no change in the degree of pain after surgery.
Typically, patients who have had a pancreatectomy become diabetic after the surgery. During a pancreatectomy, the patient’s pancreas is removed. The pancreas contains islets which produce insulin. Without an external source of insulin (such as insulin injections or an insulin pump), a patient who had a pancreatectomy would not survive.
However, at the University of Minnesota Medical Center, a patient can have a procedure called an autoislet transplant after their pancreatectomy. This procedure reduces the patient’s need to inject themselves with insulin to manage their diabetes. During an autoislet transplant, the patient’s islets are isolated from the rest of their pancreas and then transplanted back into them. Islet isolation is a very sophisticated process performed in a laboratory that meets the Good Manufacturing Practice standards set by the U.S. Food and Drug Administration. At present, the University of Minnesota Medical Center is one of only two hospitals that routinely performs pancreatectomy and auto islet transplants for patients with chronic pancreatitis.
Among 51 patients who received more than 2,000 islet equivalents per kilogram, 72% could manage their diabetes without regular injections of insulin. Of these patients, about 47% did not need insulin at all after their surgery and 25% needed only intermittent insulin treatments.
In conclusion, a total or near total pancreatectomy effectively treats pancreatitis pain in most patients who have not received relief of pain through medical management or other procedures. Auto-islet transplantation is a safe addition to extensive pancreatic resection that can prevent surgically induced diabetes, fulfilling the principle of preserving pancreatic function and relieving pain to the fullest extent possible. Patients undergoing pancreatectomy, even with an auto-islet transplant, must be willing to accept diabetes for relief of pain, but an attempt to prevent diabetes should always be made by performing an auto-islet transplant. Read more about our most recent results.
if you would like to talk with me more my e-mail is
kristynbrill@hotmail.com
DDI,
I have had that also for 1 year this past august! All my tests have came back normal and now my lipase and amylase is normal in 25 days I am having the auto islet pancreas transplant in MN because they say that i am a candidate for this. Basically, I think i have chronic which he said thats what it is but my pressures are iffy. but, anyways i am having that done at the University of MN. Maybe you should check into getting a second opinion…
According to WebMD (see below) estrogen can cause pancreatitis. So it would make sense to me that birth control pills could cause or irritate your pancreatitis.
–Laura
Medicines that can cause pancreatitis (www.webmd.com)
“In rare cases, medicines may cause inflammation of the pancreas (pancreatitis). These include:
* Some antibiotics (such as metronidazole, tetracycline, sulfamethoxazole and trimethoprim, and nitrofurantoin).
* Some medicines that suppress the immune system (such as 6-mercaptopurine and azathioprine).
* Some medicines used to treat high blood pressure (such as ACE inhibitors).
* 5-aminosalicylic acid (used to treat inflammatory bowel disease).
* Some diuretics.
* Corticosteroids.
* Estrogen.
* Valproic acid (used to treat seizure disorders).
* Certain general anesthetics.
* Antidepressants, such as venlafaxine (Effexor).”
Several people have mentioned irregular periods. I was wondering if anyone had been diagnosed with PolyCystic Overary Syndrome (PCOS)? I have been wondering if PCOS might be tied to my idiopathic pancreatitis.
I couldn’t tolerate the birth control pills that were used to regulate the PCOS. Instead my doc put me on metformin (glucophage). That helped alot. So you might ask your dr about using metformin if you’re not tolerating the birth control pills.
–Laura
Can you tell me more about the "auto islet transplant? All of my test are
normal as well and am thinking of venturing to the U of Minn.-
Thanks,
Jackie
I doubt a colonoscopy would tell you too much but one never knows. You,
like the rest of us, have had all the tests with very little answers…just
pain.
Sending a hug to you,
Jackie
After perfoming numerous tests and procedures my gi doc concluded that my pancreas is doing fine and that it looked to be healing itself. Then why do i continue to have nausea and pain? He told me that it could’t be due to the pancreas because of the above statment and sent me to a pain therapist who did trigger point injections, and two cp blocks; none of which gave me any relief whatsoever! I go to my family doc fri, so i’m going to ask him about this. is there anything else i should be aware of? I never really took birth control pills (that was the only time i would get pregnant oddly enough), and of course they have no idea why i have this since i’m so young and don’t drink, not even socially. Any suggestions?
hugs,
dream