Pancreatitis Support Group

I'm right there with you. I've been dealing with it for a few years. The key to using enzymes is sticking to a extremely low fat diet. Also with digestive enzymes Viokase seems to work the best. Use it in conjunction with Prilosec. Viokase is nice because it works as soon as you take it. Big pills though eh? I'm on The Viokase 16's. My pancreatitis was caused by auto immune. My whole head of my pancreas was destroyed also leaving the reat of it severely damaged to the point that my pancreas quit functioning. I had to have over half mine removed in a really tough surgery. Unfortunately for pain, ther isn't much you can do. Pancreas sucks that way. Morphine tablets worked for me. Using the Viokase should help though. It should take the pancreas out of the equation aleaviating some of the pain. The purpose is to keep the stomach from sending the hormone secretin to the pancreas telling it to work. I take about 6 pills per meal and a prilosec once in the morning and once at night. Make sure your potassium level is good too. If it drops which it probably will it can cause a lot of nausea and diarrhea. Talk to your doctor about Zofran also. It works well to control vomiting. As far as jobs go i wish i had an answer. Unfortunately no one in the real world cares about sick people and their problems, or don't want to deal with them at all. If anyone finds a solution to that problem let me know too. :) If you have any specific questions about anything with the pancreas let me know. I have been through it all up to this point and have a pretty good knowledge of most of the drugs out thier as well as the procedures and treatments regulations. Here is a web site that goes into Spink 1 mutations Hope it helps. It a pdf about genetic disorders of the pancreas. its a long Url, just copy and paste it to the internet address bar. http://books.google.com/books?id=B...#PPP1,M1

Thanks for the additional information. I had my gall bladder out last week. still haven't heard if there was anything wrong with it. But I have already had a pretty severe pancrease attack, so I don't think that it has helped anything.

the Bladder was the first thing to be removed in me too. The problem is that it is not the bladder that caused the problem. The bladder failure is a symptom. When you have a blockage of the bile ducts the liver bile cannot enter the stomach so it backs up into the bladder. Eventually the bladder becomes distended and hard causing great pain. Simply removing the bladder will not solve the problem. What will happen is that the bile will eventually back up in the liver and enter your blood stream causing jaundice and yellow eyes. The longer it goes on you may experience a lot of itching. The bile ducts need to be open to allow the enzymes and the bile to flow freely into the stomach. Having a stent place in the ducts will often alleviate the problem for a while. Sometimes after a stent is placed and the bile is again released to the stomach you may experience some nausea and throw up some bile. The long term solution is to repair the bile ducts or surgically alter them as stents are not a permanent fix. The other reason you are having pancreas attack is probably due to the blocked bile ducts at the head of the pancreas. That is the area where the pancreas and liver ducts converge to go to the intestine on the way to the stomach. If the blockage is there, which i suspect it is due to the bladder issue and pancreas attacks, then the enzymes will back up into the pancreas causing extreme irritation and pain. If left for too long the pancreas will scar and get damaged. That is what happened to me. Because of several misdiagnoses i had to end up having over half my pancreas removed and underwent a massive reconstruction of my digestive system to make up for the destruction and removal of the pancreas head. As you can see it is so important for the doctors to solve the blockage issue ASAP in my opinion. I hope everything goes well for you, let me know if you have any more questions. Good luck! :)

Thanks for your post. Some of what you described happened to me more than a year ago. In October 2006 I when to the hospital with really bad, stomach pain, fever and diarrhea. I passed out and went into a coma, then my lungs collapsed, my kidneys and liver stopped working and my pancreas was infected and started to dissolve. They did not expect me to live. But due to the continuing grace of God, my husband's love and some very skiled and attentive doctors I survived. It all started because of a gallstone that blocked a pancreatic duct and made stuff backup to places it did not belong. I was in the hospital for 5 months. After many surgeries and other treatments I came home with many pills and new insulin since I was a diabetic when this all started. I take viokase 8 and wondered why you take Prilosec along with your viokase?? I would appreciate any advice you can share. It sounds like you have been thru a lot of what I am going thru now. One more question does the pain ever go completely away?

Here is what I take, and fortunatly I am able to work most days. I takes Oxycontin 30 mg every twelve hrs for pain, I take 4 mg of Dilaudid every four hrs for break thru pain, nut this is when I am having a really bad pain attack. The oxy is around the clock twice a day, if I feel poopy I take 60 mg in the morning and 30 at night. I also dose phenergan aka promethazine for nausea, and it seems to work rather well with the pain meds, it is almost like an activator per say, makes the drugs intensity level a little more. I take Viokase 16 in my script it is called panaokase 16 I think that is the generic, I take about four on average per meal, I take two with small meals and more with large meals which I rarely eat anyway, I was told to stay at a 60 mg fat diet per day, if I could handle 40 that would be betterm but I have lost about 80 pounds in a years time. i am also taking simvastatin or Lipitor, ompeprazole, and reglan. MY pain level is tolerant and maintains at a two or three, I have not been pain free for three years. The oxycontin, and dilaudid is what does it for me. Let your doctor know how you feel tell him that you have pain and you need something else. You are not a drug seeker, you are a pancreatic diseased patient who needs medical support and ours too. Hope this helps.

Oh I forgot to mention two other drugs that help, Trazadone for sleep and Cymbalta for depression as we all know this has caused a great deal of depression among us all, were sick! The cymbalta blocks pain receptors as well, it is meant for other cases more geared for diabetic situations, but ws recommnded by my PC and it seems to help greatly.

I take the prilosec in conjunction with the viokase 16 and the steroids i take. Reason being, to avoid ulceration of the esophagus and stomach. As for the pain going away. If it chronic pancreatitis then unfortuanately it will allways come and go. there are some treatments out thre that are being used. One of which is to sever the nerve to eleiminate the pain. For me i had whipples procedure doen to remove the damaged portion of my pancreas. Long tough surgery, long tough recovery. The good new, no more pain and no more pancreatitis. Bad news, diabetic now and cannot eat a lot of fatty foods. This whole ordeal put me in the hospital for 7 months from beggining to end. My pancreas almost killed me too. I still end up in the Hospital now and then for problems related. Still recovering though too. According to my surgen, most people who under go pancreatic surgery will feel some pain now and again for a long time but it varies, everyone is different. Anyhoo, I am currently trying to fight off a diabetic sugar crash, so if some of this post is a little disjointed its becuase i'm fuzzy and a little shakey. The brain is not thinking straight lines right now. If you have any more questions send me a line. I'll be in a much better frame of mind later.

Hi everyone,
I just wanted to let you know that I had my ERCP done on wednesday, I guess everything went well, they put a pancreatic stent in and cut the pancreatic an main bile ducts. I still feel horrible, I have a lot of upper right pain, hoping it will go away. The Dr. said 3 to 5 days. I was really hoping to feel better right away but he said the panc. duct was inflammed so I will have to wait for that to calm down to feel better. And he said it will not get rid of the pancreatitis since I have the gene problem. Any advice on how to feel better would be great.

Well William73 has gone through a lot and seems to be on the road to recovery. The only advice I can give is to keep your head up as there will be attacks from time to time but you might still be getting better. I was having an attack evey 2 weeks but was told it would get better... and sure enough months down the road I have. But I still have pain. What I do is avoid alcohol, avoid high at food and fast food. Drink plenty of water or other clear liquids as it is important to stay hydrated. Unfortunately this is probably the beginning of a long illness. The up side is you may not feel all that bad most of thr time. My Doc put it to me by saying that I had a new best friend. Sounded depressing at the time but I understand what he meant. You will learn to live with it and what works best for you.