It has been two years since Jen, jenhasdiabetes, has lived without a pancreas. As a result of a total pancreatectomy, Jen became insulin dependent and truly lives without a pancreas. Last year, she shared her story and it became one of the most read posts on my blog. Why? Jen is incredibly strong and inspirational. And today is her GOLDEN diaversary, so I wanted to help her celebrate with a more in-depth post on what it’s like to live without a pancreas.
How did you make the decision to choose diabetes over pancreatic disease? Would you do it all over again? And do you have any regrets?
Honestly, it wasn’t even a choice. I HAD to have my pancreas removed. I was told this by doctors all over the country. My choices were: continue living with chronic pancreatitis and face years of suffering and likely have to get this surgery anyway later in life. Or, have the surgery right away and move on with my life. So, in my mind, there is a clear and obvious choice.
Diabetes wasn’t even in my considerations. I knew it was a huge outcome of surgery, but I wasn’t choosing between pancreatitis and diabetes. I was choosing between pancreatitis and life. I knew I was trading one chronic condition for other chronic conditions. But my doctors and I wanted my quality of life to improve. And in a way it has. I used to be hospitalized every few weeks, and now post-op I haven’t been hospitalized in 18 months. Day-to-day life isn’t easy having to manually work for my endocrine and digestive systems. But there are aspects of life that are better now.
I don’t have any regrets. If I could go back, I can’t think of any one thing that I would change. Most of what happened was out of my control. I wouldn’t enjoy doing it all over again, for obvious reasons, but if someone in the same situation asked me for advice- I would say choose life! Whatever gives you a chance at moving on and seeking better quality of life.
How do you react when other diabetics say “my pancreas is pretty much dead too” (or something similar)?
This is an important topic for me. Every single day I see type 1’s posting on social media using humor to say that their pancreas is dead or useless.
Some examples of phrases I have seen: “dead pancreas gang”, “proud owner of useless pancreas”, “pancreas for sale, never been used”.
I try to engage in polite conversation about this topic, informing people that their pancreas has more functions than producing insulin. The response I get is usually surprisingly defensive. I understand that humor is an amazing and important coping mechanism. I, myself, rely on it to make life with chronic illness less serious and stressful. However, if you want to use humor- make sure it’s not doing a disservice to spreading accurate information about diabetes.
I don’t think it’s fair to see type 1’s making these jokes and then the next day posting about how the general public is ignorant and doesn’t understand diabetes. If they see companies or people with influence using diabetes as a punchline, they understandably try to educate on the inaccuracies of their comments.
If we want to combat ignorance, we have to start with the information we are putting out there. If we want the non-diabetics of the world to understand the difference between type 1 and type 2, we shouldn’t pick and choose the parts of diabetes that we want them to understand.
I hope that makes sense. I don’t come at this topic from a place of anger or sensitivity, I am a diabetic just as much as anyone else is. I want the world to understand. I don’t appreciate ignorance just the same as you wouldn’t either.
There are ways to use humor in a way that is beneficial to the cause of ridding inaccuracies. Some examples I have seen used would be: “dead beta cell gang”, “I can do anything, except make insulin”, “straight outta beta cells”.
I get that the pancreas isn’t a well understood organ. People don’t know much about it until they have to learn about it.
In daily conversations in my life outside of Instagram, I run into this a lot. I will say I don’t have a pancreas and it shocks people. “I didn’t know you could live without a pancreas”, they say. Well you can, but it’s HARD. That’s because it’s not just the insulin producing cells that I lost. I lost alpha cells that produce glucagon- which makes me more susceptible to brittle diabetes. Most type 1’s still have functioning alpha cells. I also lost delta cells that secrete the hormone Somatostatin, which is a little more complicated to explain its workings within the endocrine system. I also lost the ability to produce digestive enzymes to properly digest every bite of food I eat. I have to take supplemental enzyme pills to aid in digestion, which isn’t a perfected process either.
Living without a pancreas is harder than most would expect. That’s why I want to spread the awareness. I only have the best intentions and want everyone to understand as best as possible.
Are you at risk for developing Cystic Fibrosis? (you mentioned you have genetic mutations in the first blog post)
No, I am not at risk for developing cystic fibrosis. But I do have a mutation in the cystic fibrosis gene (CFTR) which means I could easily pass it genetically to my children. My husband and I will have to undergo genetic counseling before we start our family planning to discuss these possibilities with doctors.
Just because someone has a mutation in the CFTR gene does not mean they will get cystic fibrosis OR pancreatitis. But I also had a mutation in the SPINK gene (which is known to be a causative factor in pancreatitis) and combined with the mutation in the CFTR gene, they were fairly sure that was the reason I developed my condition in the first place.
What other medications or supplements do you need to take that type 1 diabetics don’t?
I take A LOT of medications. I take medications for my autoimmune kidney disease and my mental health, but I will only list the relevant medications to this question.
-Creon- digestive enzyme therapy
-Protonix- which is a proton pump inhibitor, used because acid reflux is a common issue after surgery due to the removal of the duodenum and lower stomach and reconstruction of the small intestine
-several medications to help with pain (muscle, nerve, and scar tissue pain)- pain is a given after surgery but some people have pain longer than others. I personally still struggle with severe abdominal pain due to scar tissue buildup and internal adhesions. The pain may get better with time. The estimated recovery period for this surgery is 3-5 years. So I am hopeful this will improve as my recovery continues.
-prescribed vitamin D and vitamin B12- vitamin absorption is more difficult when portions of the digestive system are removed.
As it is your GOLDEN diaversary (February 2, two years!), tell us about some of your accomplishments and how (or if) you’ll be celebrating.
It’s crazy that it has been 2 years. I am really proud of myself for how far I have come. I have never had an A1c over 6.7 and I feel confident in my abilities to maintain that with the help from my Omnipod and Dexcom.
I just hit 1000 followers on Instagram and I’m so excited to continue to share my story and spread awareness for diabetes with an emphasis on type 3c.
I have met so many amazing people along this journey who have helped me to grow and who I have helped to grow. Just the fact that I maybe made a difference in ONE person’s life means the world to me. It’s the greatest feeling in the world and I want to keep chasing it.
I recently met my first diabuddy from Instagram in real life, Kendall (@thesweetlibrarian)! She has always been a great friend to me and the fact that we got to see each other and hang out and make plans to get together in the future is so cool and just shows that these people I am becoming so close with through the internet are my true life friends!
I am going to be a guest on the Juicebox Podcast in May this year and I’m so stoked for that. It’s one of the most well-known and regarded diabetes podcasts and I will be talking with Scott about life without a pancreas.
BIG THINGS coming for @jenhasdiabetes!! Thanks for following my journey and being so supportive. I love you all!
Thank you so much, Jen, for continuing to share your story! Not only do you inspire me, I know you inspire so many others in the diabetes online community.
HAPPY GOLDEN DIAVERSARY!