The Girl Without a Pancreas

Meet Jen, @jenhasdiabetes, the girl without a pancreas, with Secondary diabetes. From a total pancreatectomy to insulin dependency, Jen was willing to share her incredibly powerful story. Without further adieu:

Jen2I’m Jen, I am 27 years old. I was born and raised in Cincinnati, Ohio and currently live in New Orleans with my husband Eric and my dog Hannie. My journey with diabetes started about a year and a half ago. In February 2017, I had a surgery called a total pancreatectomy with auto-islet transplantation. It was a 12 hour surgery and the surgeons removed my pancreas, spleen, gall bladder, duodenum, and lower portion of my stomach. The islet transplant that they did was actually unsuccessful. The goal would have been to harvest my islet cells (the insulin producing cells) from my pancreas and transplant them into my liver, with the hopes that they would function on their own and I wouldn’t be dependent on insulin, or wouldn’t need as much insulin. My pancreas was too damaged and calcified to harvest enough healthy islet cells. Since this was unsuccessful I will be insulin dependent for the rest of my life.
The reason I had to have this surgery was because I was diagnosed with chronic pancreatitis. The pain was so consistently bad, I was in and out of the hospital every few weeks, and many doctors from all over the country said that surgery was my only option to move on with my life. This is something I had lived with for a long time that was slowly damaging my pancreas and causing it to completely calcify. I had symptoms that I can place back about 11 years that was always misdiagnosed because pancreatitis isn’t usually diagnosed in young adults, and the proper lab tests and imaging was never run. I was told my pain was due to constipation, UTIs, or the stomach flu. One day about 2.5 years ago, the abdominal pain was the most unbearable it had ever been, so I went to the ER and ended up staying in the hospital for 4 weeks.

Obviously you had a lot on your mind before your surgery, but how much did you know about diabetes and did you feel prepared to inject insulin after? 

I knew pretty much nothing before my surgery. And I was TERRIFIED. I knew of diabetes and learned about it in dental hygiene school and how important oral care is in diabetic patients. But that was just clinical background. I had no physical experience. I called an endocrinologist because I thought for sure that they would want to give me as much education as possible before surgery. Nope. They didn’t feel I needed an appointment until after I had diabetes. The main knowledge I had about diabetes was from my grandmother, who has Type 2 and is insulin dependent. My mom takes care of her and knew everything we needed to know about basic supplies and how to inject.
But as far as injecting into myself personally, I did not know how to do it on my own. I had insulin shots at different points of my health journey, like when I was on steroids and TPN in the hospital for a month and my blood sugars were wacky from all of that on it’s own.
I had a diabetic educator come to my hospital room after I left the ICU (where I was for 10 days after surgery). I was still groggy from pain medicine and feeling so sick and tired from everything I had been through. And the woman was trying to teach me about insulin-to-carb ratios, sensitivity factors, corrections and it was all just so much information to take in. It’s kind of like when any diabetic is diagnosed. You are thrown into this life-long treatment protocol and have to learn it immediately with minimal education.
Looking back on my hospital stay, I don’t remember anything. It’s so scary that a month of my life is just gone from my memory but it was so traumatic and painful that I think my brain just blocked it out completely. I am so fortunate to have a very strong support system and had my husband and parents learning along side me to pick up things that I didn’t. And obviously a lot of diabetes education is hands-on and learning from experience. So it took some time, as it would for anyone!
I did have a wonderful diabetes nurse who we had on speed dial to help me whenever something was not right.

What were the odds that the islet cell transplant would be successful?

I was told by my surgeon that based on his research cases with this surgery that 30% of patients will have a completely successful islet cell transplant and be able to live independent from insulin. So, it’s not a very high percentage. Most people who are at the point in their illness that a total pancreatectomy is the only option probably have extensive damage. Which is where I landed! My surgeon said I was one of the worst looking pancreases he had ever seen, especially for being 26 years old with no family history or personal history of alcohol use.

Was the rest of the surgery successful?

The surgery was successful in terms of everything that needed to come out, came out. No long term complications that arose after surgery. Which is a blessing because complications are common and I know a few people who have been through this surgery who did have unsuccessful outcomes.

Do you need to take other medications for other pancreatic functions? 

Yes I do! Quick basic breakdown- a healthy pancreas functions for a person in two ways. The first being insulin production/blood glucose management and the second being the production of digestive enzymes that breakdown the food you eat.
So without a pancreas, my body can do neither of those things. Before/during/after I eat anything, I have to take pills called Creon, which is a mix of 3 different enzymes that the pancreas would normally produce when digesting food. These pills are made from the pancreas of pigs (gross, I know). But I have to take them at precise times during meals and snacks otherwise my body can’t digest the food properly. If I forget a dose or do not taken enough I will have bad abdominal cramping, diarrhea, and steatorrhea. Not fun times. But I’m not perfect by any means and it happens sometimes!

Do you know the cause of your chronic pancreatitis

My case of chronic pancreatitis was determined to be due to two genetic mutations. The mutations I have are in the CFTR gene (which is the cystic fibrosis gene) and SPINK (which is a pancreatic related gene).

Could your chronic pancreatitis have been successfully treated earlier had they diagnosed it correctly?

Unfortunately, no. There is no cure for pancreatitis, whether a case is acute or chronic. Acute episodes are usually due to alcohol use, specific medications, gall bladder stones, or a familial history. Acute episodes usually are isolated episodes with elevated pancreatic enzyme levels, indicating inflammation.
Chronic pancreatitis is harder to diagnose. For the disease to be considered chronic, several criteria need to specifically be met. There has to be a history of recurring episodes, blood and stool tests, and imaging needs to be completed and properly diagnosed (specific MRIs, CTs, endoscopic ultrasounds, etc.)

What is your type of diabetes referred to as? 

I am not Type 1 or Type 2. I would be considered to have secondary diabetes, which means diabetes that results from another condition, and also Type 3c, which is also known as pancreatogenic diabetes, refers to diabetes resulting from pancreatic disease. Type 3c is a form of secondary diabetes. So both are applicable.
Technically, in my specific case, I did not have diabetes before my pancreas was removed. So my diabetes is not a result of my pancreatic dysfunction, it is because of my pancreatectomy. So I would say I would call myself secondary before I would use Type 3c. It’s confusing.

You’re active in the diabetes online community, especially with type 1’s. What three things do you wish we knew about you and your diabetes? 

  1. There is a newer “trend” I have noticed in the Type 1 community recently, and that is referring to your biggest supporter as your “Type 3” diabetic. I have seen it in posts by larger Type 1 influencers and even on t-shirts and merchandise. I love that we are acknowledging our support system as a CRUCIAL part in our diabetic journey. I know that just as well as anyone else. I heavily rely on help from my husband or my mom, who get my Dexcom alerts.
    However, using the term Type 3 is not the best way to show our appreciation and gratitude. Type 3 actually is a real type of diabetes. It is associated with adults who have Alzheimer’s disease. And also, obviously, type 3c is pancreatogenic.
    As active members of the online diabetes community, I think it’s incredibly important to stay educated and promote accurate information.
  2. My diabetes is treated exactly as Type 1 is managed. I have an Omnipod and Dexcom. It’s a 24/7 job and it’s not easy. I have stubborn highs and I have the lowest of lows. I rage bolus when I can’t get my blood sugar down. I panic eat Skittles and fruit snacks, and, let’s be honest, anything in sight.
  3. I want so badly to be apart of the Type 1 community. I advocate for Type 1, even though I don’t have it. I donate to JDRF, I am involved in Beyond Type 1, and I have made some amazing friends in the process.

The stigma and disassociation between type 1 and type 2 are stark in the diabetes community. Do you experience this yourself? (I hope not!!)

I have not personally experienced anything like this in the diabetes community. Everyone I have become friends with or just chatted with has been so kind and relatable. But, I know this stigma exists. I have experienced run-ins in my personal life of people who just do not understand the differences between Type 1 and Type 2 and just assume I am diabetic because of poor lifestyle choices. I think diabetics are SO strong because we have to save our own lives every day, that we develop a thick skin for misinformed people. We stand up for ourselves and we educate as much as we can. Even though we have our differences in our “types”, we ALL have something in common. We just have to choose to find the common ground and stand together.

Any final thoughts?

I am extremely happy to be sharing my story. I only have a couple of friends who have been through total pancreatectomies, and I feel so lucky to have those people in my life. But the Type 1 community has been the place I feel most welcome. I can post about my Omnipod leaking or my Dexcom graph and there are so many people who truly understand what I’m going through. And I feel comfortable that I could message any single person and they would help me if I needed help or just be there as a friend to talk.

All I can hope for is that my story is able to reach someone, even if it’s just one person. Please follow me @jenhasdiabetes on Instagram to see more of what I am up to! Thanks for reading, I appreciate it more than you know!

Jen
Here is a picture of my scars and how far I have come! The most recent picture is from December 2017, but it’s exactly what it looks like today.

Thank you, Jen, for being so willing and open to sharing your story! I am truly amazed at what you’ve gone through and how you’ve kept a positive outlook after such a heavy diagnosis.

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P.S. Jen is totally allowed to say she lives without a pancreas. BUT the majority of Type 1’s are not allowed to say this, read more about how your pancreas is NOT dead.