My Pancreatitis Story

My name is Mary Hayden. I am a 52-year-old married woman. Part of my life includes a disease called Chronic Pancreatitis. In April of 2001, I was taken to the hospital in terrible pain. The week before I had experienced pain under my ribcage, like a band squeezing me tight. Of course, I waited to see if it would go away. I was able to handle the pain, for the most part, until the night I went to the hospital. They did blood tests and told me I had pancreatitis, colitis, gallstones and appendicitis. The term "train wreck" came to my mind.

I was kept in the hospital for a week, during which I enjoyed a variety of unpleasant tests. I was put on IV antibiotics, pain and nausea medications and fluids. I was given nothing by mouth, not even ice chips. Now, just think about it; pain meds and nothing to drink. To say my mouth was dry is to say that the Sahara is a little sandbox. The vampire in the basement of the hospital was well fed that week. They kept taking blood tests to see if my amylase and lipase (pancreatic enzymes) levels were back to normal.

Anyway, I had to have my gall bladder removed. But before they could do that, they had to raise my potassium level, which had dropped dramatically. For that purpose, I received straight potassium, IV. This was not a fun thing. My veins were on fire as it dripped into them. I had to have them slow the IV rate way down. What they forgot to do was to slow down the rate for the regular bag of fluids (which also contained potassium). They were using one of those electronic boxes that regulated the flow of one or more IV bags. They slowed the potassium way down, but when that was empty, it kicked back over to the fluids bag and at a pace over three times as fast. Of course, there was still potassium in the line so what was left went in a lot quicker. I was crying it hurt so badly. If ever you have to have your potassium levels raised, ask for 10 bunches of bananas. It would be a lot more pleasant!

So, once they got the infection under control and the potassium level raised, they wheeled me into the operating room to remove my gall bladder. They did this with a laparoscopic procedure (3 small incisions in the abdomen). They sent me home the next day to recover. By the way, they said my appendix didn't need to be removed, as it looked fine to them. I always thought that if they saw it, they removed it. I guess that has changed.

Four days later, I walked into the doctor's office and told him that I was having the same pain again. He said that was impossible and that the prior problem had been taken care of. But he did send me over to the hospital emergency room to have my blood checked. It was the same problem; pancreatitis. So I was in for another week. They did more tests. They put me on IV fluids and meds with nothing by mouth. Another week of cottonmouth. My amylase and lipase levels returned to normal and I was sent home.

Three days later I was back in the hospital again with elevated amylase and lipase levels. That is when they decided I had chronic pancreatitis. Each time the levels returned to normal within a shorter period of time. Finally, the levels stopped rising, but the pain would still be there. This is quite normal for chronic pancreatitis and something not all ER docs seem to know about. I have had to educate a few and they never really seem to believe. I was even told at one hospital that I was not having a pancreatic attack because if I were, the levels would rise. I tried to tell them that it doesn't happen in chronic pancreatitis patients, but all he said was that I was not having pain and to get out of his ER. He refused to help me when I was in so much pain. Needless to say, I have never been back there.

But I digress. The GI doc put me on Tigan for the nausea that accompanied the pain, and Nexium, which is wonderful. I used to get such indigestion and heartburn. Now I never have that problem. After several hospital visits and extended stays, I was referred to a pain management specialist for the constant pain. I was put on Oxycontin and Roxycodone for pain. I have since changed to Kadian, a new kind of narcotic pain medication that is not prone to being abused like Oxycontin is. It has some special formulation that doesn't allow it to be abused as a street drug. I also take Elavil (generic Amitriptyline) for pain control as well as Celexa for depression, which often accompanies a chronic disease. Prior to this, I had been on Synthroid for an under-active thyroid gland and Premarin, due to a hysterectomy. I pretty much take a handful of pills twice a day. It's not great, but I am able to function taking these meds.

My veins are so damaged that anytime I go to the hospital or even need a simple blood test at the doctors' office, they have to stick me 5 to 10 times just to find a vein that doesn't collapse. The damage is due to all the hospitalizations and IV pain medications I have had. I have even had a central line at one time, which was wonderful. They are done in bigger veins (mine was in my neck) and they do not hurt when the shots of pain and nausea meds are injected. Plus, there are 3 ports where they can take blood and give IV fluids as well as giving pain and nausea shots. No more hunting for a vein several times a day! Unfortunately, they had to go through 20 sticks in the ER before they did that. In the future, if I have to be admitted, I will insist on a central line.

I do not work outside the home because there are too many days that I can't even get out of bed for very long periods of time. I could probably get a job, but keeping it might be a challenge, since I would have too many sick days and hospitalizations. I am considering filing for Social Security Disability. I think I have resisted that, as it would mean giving into this disease. I am also checking out some work-at-home telecommuting employment, such as mystery shopping and proofreading. Hopefully, something will work out soon.

Before I finish, I must tell you of my hero in all this. My sweet hubby, Phil, has been by my side throughout this whole thing. He has completely taken over the financial responsibility and we have met our obligations each month. He really thought he would only be able to do that for a few months, but it has been a year now and we have never paid a bill late. We even moved up here to Knoxville, Tennessee, while our house in Ft. Lauderdale, Florida, has not been sold. Even with the dual expenses of mortgage and rent as well as utilities, we have had enough money. Phil has worked hard, getting as much overtime at his job at the Post Office as possible.

I also believe that God has provided for us. He has made sure we had everything we needed. I pray that someday I will be healed. I know that prayer will be answered, either here or in Heaven. It is up to my Heavenly Father and I rest in His care.

I don't want to paint too glowing a picture of my attitude. There are days when I just want to give up; days when I don't want to do this anymore. If my pancreas isn't bothering me, the colitis is. It gets discouraging and there are times I just want to be done with it. It is those times when I reach out to my loved ones as well as those people I have met on the Internet. I have made many good friends that I have never seen. Alma is my CP (as we call it) buddy. I have also made many friends at in online clubs like Quilting Circle of Friends and Women of the Faith. They are dear to me and we chat daily. Without this disease, I would never have met any of these people; and without these people I would have a difficult time getting through the day. I thank God for them as well as my sweet hubby and my two wonderful sons, Brian, 23, and Scott, 20. I have been truly blessed in family and in friends.

We recently moved from South Florida to Eastern Tennessee. It has been quite an adjustment, having to get all new doctors and hospitals. I have also missed my dear friends, Vicki and Debra. They have been like sisters to me for a very long time and I love them dearly. However, I love my new state and look forward to building our dream home on five acres we own outside of Maryville, Tennessee. We have wanted to do this for many years and now it is finally coming to pass. All in all, in spite of the illness, I have been quite blessed in my life. I have friends and family whom I love and who love me. And in the end, isn't that really the secret of success?

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