The Beginning of the Journey

     So, here it is .....my first blog entry.  I guess I will start by explaining as brief as I can the last 20 years of my health history! ;-)  I have struggled with health issues for a really long time.  I have seen just about every doctor there is to see.  I have been diagnosed with irritable bowel syndrome, chronic fatigue, fibromyalgia, Graves Disease, possibly Ehlers-Danlos Syndrome, Asthma, endometriosis.  I have had surgery to remove my gallbladder, appendix and a hysterectomy. And yet, I still struggled to live a half way normal life.  I was still sick a lot.........in and out of the hospital a lot! I was embarrassed and felt like everyone thought I was crazy, a hypochondriac or wanting attention. I tried to keep things quiet because I didn't know how to explain any of these problems.  As I'm sure you can imagine, I also struggled and still struggle with depression and anxiety.  

     Finally, my sister, Kim,  recommended I see her GI.....Dr. Dino Ferrante.  I love him! He finally started finding answers for me.  He suspected I had Sphincter of Oddi Dysfunction. Because it takes a very specialized doctor to perform an ERCP, the test that determines whether or not you have this, he sent me to see Dr.Kenneth Sigmand in B'ham.  He performed the test, I did have a SOD.  This is basically when the opening of your bile duct spasms and does not drain properly; and therefore, the bile doesn't drain properly....this in turn caused my bile duct to close up.  I believe all this caused my gallbladder and appendix to become infected.  So,  after the ERCP , I felt so much better for about 9 months.  But, then my symptoms began to return again. Once again, they did an ERCP, discovered the bile duct had closed up again, and they repeated the procedure with a balloon dilation.  Again, I felt so much better, this time for about 6 months before my symptoms started returning.  Again, I went for another ERCP, the bile duct looked ok this time, so they looked at my pancreas.  This is when they discovered, I had a birth defect of my pancreas called Pancreatic Divisum.  In short, they tried twice to "fix" this problem and give me relief.  Both times, I ended up with Acute Pancreatitis and a 5 day stay in the hospital.  I would feel a little better for a short while after each one but slowly the symptoms would just return.  And, in the meantime, my pancreas was becoming more and more damaged.  

      In July of 2011, I had my first acute attack, that came out of the blue one night.  It was worse then any of the others.  I stayed in the hospital for 7 or 8 days, with extreme pain and nausea that was very difficult to control.  Even once I left, I was still struggling.  My family encouraged me to seek help at The Cleveland Clinic.  So, off Butch, my sister (Kim) and I went.  We flew out there hoping for answers.  I have to say......during this time, I felt God speaking to my heart.  I would tell people, "I am going to the Cleveland Cleveland praying they give me some hope."  Well, I could hear God - every time I would say that, prompting......"Don't put your hope in them. They are just human. You will be disappointed."  Boy, was He ever preparing me....because I was SO disappointed in them.  The doctor there only performed one test ~ (one that isn't very reliable) and from that, determined it wasn't my pancreas still causing the pain.  Along with stating in their report that my pancreas looked ok, they also, said my gallbladder was normal in appearance.  If you remember from above, I don't have a gallbladder!  Needless to say, that was a wasted trip and a lot of money! Back to Dr. Ferrante I went.  He now calls me his favorite patient! ;-) I think this might be sarcastism, but he hugs me and smiles, so I'm choosing to believe he means it!;-)

Back to Birmingham for an EUS ~ Endoscopic Ultra Sound. The pancreas specialist there FINALLY discovered I had Chronic Pancreatitis.....which we suspected all along.  Now, this might be disappointing news to most.....but, at that moment....it was a relief to me.  I wasn't crazy! I wasn't imagining this pain! I finally had proof that there was a reason for my continued pain.  But, then, the reality of this disease started setting in and I was overwhelmed with what my future looked like.  Chronic Pancreatitis is a progressing disease ~ one that is very painful~ has stigmas attached to it's name~and no good treatment options.  I am living all of that out right now.  I've had continued hospital stays, where the nurses treat you as a drug`seeker and suggest you take tylenol instead of the prescribe pain medication......did I mention that the health care professionals agree that pancreatitis is one of the most painful diseases?! I am now at home with an IV....with much gratitude to my GP.......waiting to be referred to a surgeon at UAB.  This is the last resort for treatment......not a cure.  It is called Total Pancreatectomy with Auto Islet Cell Transplant ~ TP/AIT for short.  I will explain this later.  I think I've written more then enough for now.  Hopefully the future blogs will be shorter in length.  It was just hard to put into words 20 years of this painful journey.  Thank you to all those who read this......I know those who are dealing with this find much comfort in reading the details because it lets them know they aren't alone.  I know this because the first time I read someone's story that was almost identical to mine, I wept.