Stopping Pancreatitis Pain

Pancreatitis
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#1

Was wondering if anyone had received Sandostatin/Octreotide injections for their pancreatitis pain. My doctor at Shands Hospital at the University of Florida recommended I start the injections while I was still in the hospital here in Tallahassee. It took about a week of injections in my stomach before it took effect but after that, no more pain.

When I got home, I was able to give myself the injections–was scared half to death when they told me that I needed to stop–was so afraid the pain would start again but by that time, the pancreas had settled down and so had the pain.

I did keep the dull pain in my back with Creon but the Viokase has been amazing for me. I take 4 pills every time I eat a meal and a couple if I’m having a snack. They are doing a study and development of one Viokase pill at the Univ. of Florida that you will take once a day for digestion.

Thank heaven for wonderful scientists and doctors who care.

#2

I think it’s WONDERFUL that someone has obviously taken an interest in tackling this tricky and illusive condition. I think that persistance will rule the day when it comes to ALL of us trying to seek out medical care and compotent and effective treatment for our condition. I have had to FIGHT for it, but by God, I have a LIFE. I have a child, a husband, a business and many many places to travel and see before I hang it up. I just want my life back. I’m not even asking for a miracle. I just want to be able to get my pain and sickness down to a level that permits me to “ignore” it and be functional. I have an appointment at Vanderbilt University on Friday, and I’m hopeful that I can find an expert there that will really take an interest in my TOTAL Care. I’m content just to have my symptoms managed at this point…ya know??? Tell your doctor thank you!! Their research and dogged persistance is the only thing that is going to find a cure for all of us. I hope you are happy and healthy, and on your way to the life you deserve. Keep us posted. I definitely am keeping up with EVERYTHING I read on these boards. Information is our ally, and support, is really what we all need to get through this! Don’t ever doubt what you are going through. It is real! I am living proof of it, as are each and every one of you. Thanks to all who share :slight_smile:
K in TN

#3

Yes, the Sandostatin has changed my life! I started out with the injections 3 times a day, now I get a long acting injection (Sandostatin LAR Depot) in my hip/ butt cheek every four weeks. It stings like heck for a couple of hours, but the results are worth it. I still have to keep to a low-fat/no fat diet, eat lots of yummy fruit and low-processed sugar…some nuts, like almonds and peanuts seem to help, too. (lots of protein, healthier kind of fat) ANYHOW, my pain is less, fewer flair ups…fewer hospitalizations, less pain meds. They have told me it has a limited time of effectiveness, tho. Makes me sad, but grateful for every wonderful day.

This disease is so awful, and I have felt so alone…my doctors have ranged from wonderful to awful…and there have been days I have questioned my sanity. The only thing I know for sure is that if I was making this whole thing up, I sooo would have gotten over it and changed my mind by now!

LOL For any of you doubting yourselves, nobody can make up or imagine the pain we feel…and that is the problem…sometimes dr.'s think if they can’t see or fix something RIGHT NOW, then it does not exist. That is their problem, and unfortunately, when they are cruel and uncaring, or accusing, their problem becomes our problem. It is amazing what one compassionate voice can do for our souls, isn’t it? Thank you to everyone here…your caring voices have become a choir of hope - letting me know I am not crazy, or alone in my experiences with this weird thing…You all help so much on the discouraging days when I am reminded just how little control I have sometimes!

But, on the UP side, we can control some things: our diet, our attitude, and how we allow our doctor’s to treat us - always insist on respect!

Thanks for reading my rant!

#4

Great rant. You are so right. No one knows our pain. My current doctor is so nice that every time I see him I cry just because I’m grateful for the help he is trying to give me. Hang in there everyone. We are not alone.