Chronic Pancreatitis

Pancreatitis
#1

My daughter had an attack of “acute pancreatitis” in Oct. Since then, she has had several episodes (and they seem to be coming more frequently)–making us suspicious of chronic pancreatitis.

She has just taken a new job (1 month ago) and has already missed two days! Today is Sunday, and she is sick again. (Last episode ended 10 days ago). She is, of course, experiencing abdominal/back pain and vomitting.

She is watching her diet, taking liquids (no alcohol), and taking enzymes. HELP. Any and all suggestions are welcome!

#2

Warbi,
Do you have a feeding tube? If so let me know how well it works for you. I’m starting on mine again tonight. I hate it but it helps at the same time.

#3

I also wanted to get some info about the enzymes that I’ve heard a lot about. I was wondering what the name of the medication is. I’ve taken protonix and carafate. Is that the same thing? If so, I couldn’t keep them down.

#5

Hello to all...I am a RN and have suffered with chronic pancreatitis since 1997. I went through several years of pain and symptoms even having a normal gallbladder removed before finally being diagnosed with sphintor of odie disease following an ERCP. The 2nd ERCP led to a bout of life threatining pancreatitis with a 20 lb pseudocyst and my life was forever changed. Anyway, a few things I have learned about this disease. First, few people know about it including doctors.So choose your doctors carefully. Second, when your syptoms escalate,stop solid food and go to clear liquids as the ONLY WAY to decrease the inflammation in the pancreas is to let it rest. This of course can lead to being hospitalized, but it is the one way to stop a bout of pain etc. Last, if you are chronically ill, an islet cell transplant can stop the disease in its tracks. It is a costly option, but definately worth exploring with your doctors.One more note, the meds you inquired about are not enzymes. one is a drug to coat the stomach and is used for ulcers etc and the other is a drug used to treat GERD.I hope my input is helpful and my prayers go out to all who suffer from this disease.

#7

anyse,

I am so sorry that u believe all will come to an end soon. my prayers be with you and hope that something somewhere will help stop this awful disease. i only started last yr with my bouts of pain, due to stones in my common bile duct. everything has gone downhill since then. chronic stomach pain, severe nausea and sweating, they still have not diagnosed me with cp they believe i am having ap the diagnosis for cp is based on changes in the pancreas which my last scope was in oct( showed no change). so i cope as best as i can i reduced my fat intake to 20 grams a day and times that don’t work seems like when u think all is under control and u found what works for you it all gets erased, and we have to start all over again ,its a crazy exhausting journey to say the least, i pray that in the near future something will bring you comfort.

nancy

#8

Hello all

I have been dealing with the pain for over 7 years and was told I had fatty liver disease with abdominal adhesions.  Had the upper scope done several times and told I have gerd.    I had the classic symtoms of pancreatitis and I thought I had food poisoning.  I never went to the doctor for this because I was a truck driver on the road.  I had the ercp done this summer for diagnosis and had the pain as bad as ever.  The doctor put me on enzymes and dicyclomine right away  and tramadol for the pain.  I still have bad nights but I have much gut swelling, my liver is very swollen.  I have quit the road and gone very low fat and nearly sugarfree.  I work part time and lifting over 50 lbs is painful too.  Diet watching is helpful. Does anyone have any of these problems? 

suz 

 

#9

June,

Yes, your cause for pancreatitis was sludge in the bile duct and the pancreas took the hit. Be glad it was not your kidneys or liver! Well, maybe not glad. You are doing the right thing to go on liquids until the pancreas has had some rest. However, when you eat food, you should not have more than 15% of your total daily as fat and this adds up quickly! Fat is so hard to digest and makes your pancreas work so hard that you get another attack. Stress is another factor. Try to reduce any stressors in your life or learn how to deal with them so that you don’t make the center of your stress go to the pancreas or digestive system. I have had CP for 12 years now and will die from it in the next few years as it has worn me down, dropped my weight to dangerous limits, and has also brought about a bunch of side effects that are so bad that I have been bedridden for over a year now.

Do you have a pain medication specialist? If you don’t, get one fast. There is no need to suffer more than necessary. I am on fentanyl patches (200 mcg/hour) every day. I also take dilaudid tablets for breakthrough pain (usually 2-4 4 mg tablets). If that does not work, it’s off to the ER, where I go about every two months or so.

Anyse
anyse1@mac.com

#10

Hi to you all you have made me feel like I am not out of my mind. I have been having pain for 14 months. I was in the hospital a year ago January for 7 weeks with severe abdominal pain they all kinds of tests and everything was normal they did a ercp the pain went way which they couldn't understand , I was thrilled they let me eat and with in a few hours I was in trouble with pain so bad I had to be put on morphine pump plus i had a central line put in and no eating put on tpn feeding. I had a pic line put in . later i ended up in a rehab to learn how to dothe tpn but instead got severely sick on the tpn the rate or the compination they used had me throwing up for four days straight I thought I was going to die. Three years ago I was diagnosed with a pancreatic divizum plus my bile ducts was cleaned out by a ercp but end up with pancreatis. As of present I get mixed messeges that i fit into chronic pancreatis / nerve ending pain. I have had Acupunture, went to a chiroprator, went to a neurologist wore a Tens unit , and physical therapy which none of it works , I get diarrhea , if I stick to fluids for days the pain settles down some I have found that lately if I eat something to much fat in it I get quite naseasus. I get so frustrated and depressed .Thank you for have this forum where I can find other people like me

 

 

#11

Hello,

I have had chronic pancreatitis for 2 1/2 yrs--the first attack almost killed me--was in the hospital for 2 1/2 months--never thought I'd come home--didn't eat for four months--just parental feeding bag hooked up to a pic line. Had another attack a year ago Jan. but in the hospital for only 5 days.  Was on the enzyme, Creon, but still was having the pain through my back all the time.  One of my doctors suggested taking Viokase--it has been amazing for me.  I still really watch what I eat--eliminate fat as much as I can, no meat, just fish, no raw vegetables or salads--just cooked vegetables, some bread, pasta.  Of course, no alcohol.  If I do start having some pain thru my back, I take an additional Viokase or two.  I have to take 4-6 Viokase every meal, and they are large, but it has made all the difference in the world for me and living without pain.

#12

Is she eating during the attacks?  We’ve always been told just clear liquids - or nothing if in the hospital on an IV - but clear liquids and Tylenol w/ codeine for the pain works for my son…he is just a kid though (10 y.o.).