Severe Pancreatitis

[isoabch]

Since August of 2002, I have experienced four episodes of pancreatitis.  In three of the episodes, my lipase levels were anywhere between 25,000 and 35,000.  Although I have had my gall bladder removed and had a stent put in my pancreas to open a duct (which has since been removed because I developed sepsis), I continue to have pain in the upper right quadrant of my abdomen.  I have regular bouts of putrid diarreha and my feces is polluted with small stones of yellow or brown color.
I recently developed pain in my periumbilical area and it was oozing with something that had the odor of bile.  My internist is sending me to a surgeon today because he fears bowel obstruction.  I eat nothing with fat or very little fat, I have lost over 25 pounds since I became ill.  I recently developed thrombophlebitis in my left arm (which is still sore after almost a month) and my right shoulder and upper arm are sorer now than they were before my gall bladder was removed.  I would appreciate hearing from anyone who has had similar experiences or who has any insight into what is going on with me and what route they would suggest that I take would be appreciated.  
I am the mom of three young daughters 13, 10 and 7 and really can't deal with being sick all the time.  Please Help.

[TazLady]

Hi,

I also have SOD.  And have had trouble with that until I had a sphincteronomy.  That is doing ok now.  And that is something to have checked especially if you have had 4 bouts of  pancreatitis already.

If you have Pancreatitis, it NEVER goes away once you have gone chronic.  With 4 episodes under your belt, I would be surprised if you have not gone chronic yet. You titled this Severe Pancreatitis.  It usually doesn't get to that stage without you being Chronic.  The pancreas is an organ that DOES NOT rejuvinate itself.  Once damaged it is damaged for life.  

I will live with pain for the rest of my life.  I know there are future surgeries I WILL have to have.  I will be on medication for the rest of my life too. I will have to follow a special diet for the rest of my life. Pancreatitis is NOTHING to fool around with and don't fool yourself that you will "get over this" one day.  It does stick with you for the rest of your life.

  HOWEVER...I am not so sick EVERYDAY that I can't get out of bed, do my daily routine, take care of my family.  Yes, that does happen on occasion and yes, I do experience pain everyday.  But I try to live as normal a life as I can.  You will have good days and bad days.  Some days will be worse than others.  You will have hills and valleys with this.  I have weeks where I feel great and then I have weeks where I don't do so well.

You asked about this disease and I told you straight forward in my first post.  I did not pull any punches when I posted.  Pancreatitis can be life threatening if you do not follow all the "rules" to take care of yourself and this illness.

Follow your diet, stay away from alcohol and see your specialist often.  Alot of what you mentioned sounds familar to Pancreatitis.  The diareha, the continuous pain, the off colored stools.  You are probably experiencing fatigue, mood swings, depression and/or extreme tiredness.  My specialist told me it's exhausting being this sick and he is right.  With your families help, you will be better in the future than you are today.  

I realize that the last thing you wanna hear when your sick is that it will never go away.  But pancreatitis plays for life.  You just have to learn to live with it, accomidate it and accept it.  Your life has changed now and there's not much you can do about it.

There is a wonderful support site I belong to that you should check out.  We all have Pancreatitis is some form and severity.  We help each other and support one another.  WWW.pancreatitis.org.uk      Click on community at the top of the page and then new discussion board.  You will find alot of useful info there.

TazLady

[Lor]

I don't think you will be sick the rest of your life! When we are sick that is the last thing you want to hear. Perhaps the stent that was put in didn't work that time.
Do a lot of research on what Dr you go to. I don't think you should just pick anyone. Find a Dr who has treated this problem and symtoms many many times. The more they have the better your outcome. Try going to borland-groover.com Read about what they do at their clinic. I have been treated there for sphincter of oddi dysfunction which gave me symtoms similar to what you are going through. People travel from all over the country for their experience. I know it is horribly depressing to not know what is in your future. The pain alone is the worst.

[TazLady]

Hi,

I can't help with alot of what you have asked but I can tell you this.  I have severe Chronic Pancreatitis.  And you will be sick for the rest of your life.  It's a dreadful disease.  My son who is 11 asks when I'm in pain, "mom, do we need to go to the hospital?"  It's horrible to have your child be so scared for himself and you, that they have to ask that.  On the other hand, how wonderful for me that he is so intuned with my illness that he knows what to do should the need arise.

I try to keep my fat intake to 25 grams or less. I have heard of others going below 20 grams of fat, but that isn't healthy for the body.  You should be on some enzyme suppliment foods to help digest what you do eat.

I have bouts of pain with my pancreas.  I just had a CT Scan and found no cancer, tumors or psudocysts. YEAH for me.

I hope you can find a good surgeon to help you with this.  My son was only 7 or 8 when I got sick.  He is handeling it very well.  You girls will too.  Let them be a part of your life, tell them whats going on (of course only to a point) but they need to be prepared in case something happens and you need to be hospitalized for something.

Good Luck,
TazLady