One of our Glu Ambassadors, Sandy Brooks, has been attended our in-person educational programs and been a big advocate for T1D Exchange for the past few years. Today she is sharing her very unique story of how and why she acquired type 1 diabetes.
I’m a “surgical type 1” person with diabetes (PWD). I acquired my diabetes through having my pancreas removed due to hereditary chronic pancreatitis lasting for 27 years. I had my pancreas removed and an autologous islet cell transplant on my 52nd birthday. I didn’t plan to have the surgery on my birthday, but it has worked out perfectly because it really was a rebirth in so many ways.
As a kid, I always had belly issues. My pediatrician called it a “nervous stomach.” This “nervous stomach” followed me through to high school and beyond. Things got worse as I got older. In my twenties, I decided to have this issue more thoroughly worked up. It took years to get a diagnosis of chronic pancreatitis (CP) because with this rare, chronic disease, there are no blood tests to definitively determine it. Also, there is a stereotype that only old alcoholics get pancreatitis, and I had never been one to drink. Plus, where I was so young, no one even considered this to be the issue.
Finally, at 27 years old, I got my diagnosis of chronic pancreatitis and the stigma associated with it ensued. I was frequently accused of drug seeking due to my primary symptom being excruciating abdominal pain. When I gave in and sought help in the local ER, besides a little anemia, my blood work came back fine. The usual suspects of a raised amylase and lipase in acute pancreatitis are not raised in chronic pancreatitis. With CP, each flare or attack causes damage to the pancreatic cells and they eventually burn out and no longer produce these enzymes. The islet cells can be destroyed by CP as well, so if I hadn’t had my pancreas removed, I would have eventually become a type 1 PWD. I can tell you, in my opinion, there are few things more devastating than being told to “go home—there’s nothing wrong with you,” when you are experiencing excruciating pain!
Fast forward to the late 1990s, a friend forwarded a web address to me that she said I had to check out. It was from the University of Minnesota where they were developing a surgery to help those of us dealing with end-stage CP. It involved a pancreatectomy and an autologous islet cell transplant. In other words, they removed the pancreas and harvested that person’s own islet cells and transplanted them back into the person’s liver, specifically the portal vein. While it seemed very intriguing, it was only done at the University of Minnesota, and I lived in Boston. Plus, people either died or got slightly better, only to die a short time later. My initial reaction was “Thanks but no thanks!” But over time, things changed.
In 2012, I was surfing the internet while I was dealing with a current flare-up of my CP. I was so discouraged and frustrated that I decided to look up the surgery I had heard of in the 1990s and see if they had made any progress with this condition. Unbelievably, one of the local Boston teaching hospitals, Massachusetts General Hospital, was developing a program for this particular pancreatic surgery, and the autologous islet cell transplant process was considerably better. I decided right then and there that I was going to contact that program’s lead doctor and see what the program entailed.
Keith D Lillemoe, MD, became my pancreatic surgeon and after meeting him and going through several diagnostic tests, he told me I was a perfect candidate for the procedure. I then met James Markmann, MD, the transplant surgeon, and the three of us embarked on the journey that has lead me here. Needless to say, if I’m writing on a site focused on type 1 diabetes, you can guess that my islet transplant failed due to enduring years of chronic pancreatic disease resulting in islet cells that were too fragile to withstand the whole transplantation process. But the pancreatectomy did its job and the excruciating pain that I had had for 27 years was gone! However, I had never even considered that the islet cell transplant would fail. Suddenly at 52 years old, I found myself with surgically induced T1D. Within a month after surgery, I living with a different disease and wearing an insulin pump. I now have a CGM as well, and would never want to give up the technology I use today.
I’m not going to say it was an easy transition, but I had the distinct advantage of being an RN and already understood much of what the disease entailed. Yet I found myself dealing with many surprises. No one in nursing school tells you how hard it is to manage your blood sugar. (I know—I’m not telling you all anything you don’t already know!) Technically I knew what type 1 diabetes was, but I had no idea how drastically my life was going to change. Plus, I didn’t know a single person who had the better known autoimmune type 1, never mind the surgically induced type 1. (I’m still having trouble finding anyone else who has had their pancreas removed. I’m beginning to think we’re more like unicorns and really don’t exist. If you know any PWDs who developed diabetes due to having their pancreas surgically removed for whatever reason, I would love to talk with them!)
Many people have heard me say that I’m glad to have become a PWD when I did and that is for many reasons. A huge reason is the presence of the Diabetes Online Community (DOC). After finding blogs from DOC personalities such as Kerri Sparling and Scott Johnson, I found Glu about a year into my dance with diabetes, and have been coming to this site almost every day since. The forums here and the “question of the day” are an awesome source of support that I can’t get anywhere else.
A few months ago, Glu posted a question of the day asking what positive things had come out of having diabetes. I have had many positive things come out of my diabetes. I have gone to incredible conferences, have learned more about myself in the process of learning about my disease, have become more resilient than I ever imagined I was capable of and met many awesome PWD both in person and online. But this question was met with outright anger. Many people were angry that such a question could be asked because in their opinion there was nothing positive to be gained from T1D. I come at this question from a different perspective. I had lived for 27 years with excruciating pain that prevented me from being able to work in the field I loved, and made each day not only a living hell for me, but also for the people who loved me. So, I can kind of say that I chose to have diabetes because I decided to have my pancreas removed to rid me of that pain and prevent the all-too frequent hospitalizations I endured and I knew the risk was certainly pretty great that I could end up with surgical type one even if initially my transplant had worked. I consider each and every day that I wake up to be a blessing. The daily management of my surgical diabetes is a small price to pay to be rid of that pain. Diabetes sucks, but it’s better than the alternative of being six feet under and pushing up daisies.
If anyone is interested, my blog can be found at muddybrooks.wordpress.com. Thank you for reading my post.
—Sandy Brooks, Glu Ambassador