Dear ShanerMT,
Your wife is lucky to have you!!! I had misdiagnosed GI problems for years, I had an appendectomy that was not necessary, years of misdiagnosed gall bladder disease and once that was removed… the joy of pancreatitis since the early 1990’s. Reading your wife’s diagnosis was like reading my medical history. You really need to hold on and be ready for a bumpy ride which lets you enjoy life more on the good days. I have not let it hold me back.
In May of 2003, I had a drain put in my pancreas with a wonderful blue nasogastric tube coming from my nose draining to a bag on my leg. I never stopped to think about it and look at pictures at my son’s High School graduation with me standing next to him, blue tube and all. You just have to keep taking every day as it comes. There were hospitalizations for acute attacks where I disconnected my IV’s, got dressed, left a note on my pillow for the nurses that I would be back in an hour and had my daughter meet at the front door to drive me to my sons’ baseball game. Those were the bad days, you can either let the pain own you, or you can own the pain!!!
That was 2003 and I met two amazing physicians at Brigham and Womens Hospital in Boston. My GI is Dr Peter A. Banks, Director of Pancreatic Research at Harvard medical School and Dr. Michael Zinner, Chair of Surgery, also at Harvard Medical School. Together with their teams, they recommended that I have a Whipple Procedure performed.
While not a complete cure, the pain is greatly reduced, I only have a pancreatitis attack occasionally and my enjoyment of life was greatly enhanced.
You learn that everyone is different, what I can eat, your wife will not be able to and vice versa. I take about 24 to 30 Creon 24 pills a day whenever I eat. I eat small meals and eat only when hungry. A benefit of the Whipple was the surgical damage to the nerves in my abdomen, I do not have much feeling on the skin and perhaps the pancreatitis pain is less or I am used to it. Actually, today I am having a mild pancreatitis attack… you know it and you just ride it out, drink liquids for a few days and it goes away.
You will not lose your wife and she can and will live to see her childrens children if you have a positive attitude and good physicians. I credit mine with my quality of life and being alive today. I live outside of NYC, but chose Dr’s in Boston which is not as convenient. There are great Dr’s in most major cities with large teaching hospitals, I just felt immediately comfortable with Dr. Banks and Dr. Zinner. I have their cell phone and home phone numbers. I have only called them 2 or 3 times in 10 years after hours, but they know I only call when it is important. There are not many Doctors anywhere that will do that. I have continuing health problems and people do not understand and it is hard to know what they think. I usually downplay how bad I feel and consequently people have no idea that I have pain everyday and that I cannot eat everything or some-days I just cannot do everything everyone expects of me. I have had 4 or 5 incisional hernia repairs, an obstructed bowel last June and a host of lesser problems. Sometimes you feel very alone, your wife is lucky. My wife has gotten used to my pain and illness and it not that she does not care, she just does not realize what I go through because I stopped letting anyone know how I feel. I usually travel to Boston by myself because everyone… family and friends included think that I can take care of myself. Do not stop being by your wife’s side, she needs comfort even though she might not admit it.
You are beginning a trip and everyone is different.She will learn what to eat, when to eat, what takes care of pain, what does not. What medication works for one person does not work for another. I start the day with a 5mg Percocet and usually do not take another because the pain is not noticeable when you are busy. I take my Creon and my Nexium. I sometimes need a Xanax or two at bedtime to let me sleep. I found that Crestor for my cholesterol caused peripheral neuropathy and I started to lose feeling in my feet. I also take Uloric because I have had gout for several years and taking colchicine does a job on my GI tract.
Bottom line… find a good Doctor, do not be afraid of surgery and do not let disorder stop you from enjoying life. It will take time and practice, but you will learn how to adapt and make very day a good one.
Parenthetically, my wife was diagnosed with a mass between her ovary and bladder about 3 weeks ago and I found a great oncology surgeon at Memorial Sloan Kettering in NYC who removed it 11 days ago. The final pathology report came today revealing a benign spindle cell tumor. These are usually not benign, she was extremely lucky and so was I. On the other hand, I have been caring for her for the last few weeks and I think she may for the first time have a little more compassion over what I have been handling for 20 plus years. I do not plan on dying soon and I hope my Doctors live a long healthy life as well. Once you find doctors like Peter Banks and Michael Zinner and Jean Landry, their Nurse Practitioner, you realize how fortunate you are to be in the hands of caring knowledgeable people.
Reach out whenever you need reassurance, there is always someone to let you know that neither you or your wife are alone.
Good Luck and do not ever give up hope…
