Spreading Awareness for Pancreas Research
Life Without A Pancreas...
Living without a pancreas can be tricky. But it is not impossible.
With the most severe cases of a diseased pancreas, the decision to have a total pancreatectomy is sometimes made. Here are some tips to those who must then live without a pancreas:
You may have days of regret. I had my share of days after the surgery where I said, "what have I done!?" It is very difficult the first month or so, and days can seem even worse than your worst. Hang in there! There can sometimes be set-backs, but know things WILL get better. It may not happen at the pace you would like, and your body may never be back to the same self it was prior to illness, but give yourself time to reach your new potential.
Your tummy may rebel. I had to learn to "eat" again, and my digestion was very messed up. My stomach hurt a LOT and cramping was severe at times. I still have digestions problems, and some days it can keep me from doing the things I wish/need to do. Just understand that your digestion is changed with this surgery, and it can be difficult to deal with, but there are ways to manage it to the best of your ability. You may also experience dumping syndrome or gastroparesis as a result from the surgery.
Always know where a bathroom is. As I said, your tummy and digestion are not the same, and you never know when it will get mad.
Always take your enzymes. These are important to the digestion of food, and once your pancreas is removed, the digestive enzymes that do all the work to break down your food are no longer there. It may be gross to talk about, but without these enzymes, you will be left with diarrhea, bulky floating stools, and a bad tummy ache to boot. You will also lack the important nutrients your body needs. The more fat in your food, the more enzymes you need. Not every meal will require the same amount of enzymes. Unfortunately, there is no tool to help you get it right, as every BODY absorbs things differently and requires different amounts of enzymes. It is an "art", not a "science", to figure this out. It can be trial and error, but soon you will know what your body needs, and if not, it will tell you with signs from the points above.
Always check your blood sugar. You and your doctor or diabetic educator will determine how often it needs to be checked. When you are a new diabetic, or during the first year of your recovery, it may be a lot. Your islet cells may be unsure of how to react all the time. Stress, exercise or using energy, and illness or infection can all mess with your blood sugar levels. It is important to try to be diligent in monitoring this especially during these times - EVEN if you are not insulin dependent. If you do not require insulin after surgery, the islet cells can die off in the future, so make sure to monitor potential signs of diabetes.
Know what to "feel" for. Often, you can learn the signs that your body gives you to let you know things aren't right. Many people can feel the shakes, or what I call the "jello feeling", when their blood sugar drops. Try to be aware of this at all times. It can happen quick - especially if you are out and about or doing something that distracts you. Sometimes, the signs are not felt.
Try not to be embarrassed. It can be hard to stop in the middle of something (like when you are out to dinner with friends) to check your blood sugar or give yourself insulin. It can seem awkward. Try to get comfortable with the idea that this is your new life and it comes with the territory. Sometimes you can do it discretely, but if there is no perfect "place", then those around you should understand. (I even have my own daughter roll her eyes and say, "Mom, can't you do that somewhere else?" at my own dinner table. Oh well.)
You will sometimes get it wrong. Boy have I. I have given myself too much insulin, not enough insulin, or insulin at the wrong time. It can be scary, but most of all it can bring guilt. Guilt also comes when you eat the wrong thing when you know you shouldn't, but remember, no one is perfect. Give yourself some slack, and do better next time. If you have problems with insulin or your blood sugars and aren't sure what to do... of course call your doctor!
Always be prepared. Wear a diabetic/medical bracelet or i.d. Always bring your blood glucose monitor with you wherever you go. I keep an extra in the car. Also, keep sugar tablets or gel (or even raisins as my diabetic educator suggested) with you at all times. Have extra stashes where you go the most - next to your bed for night-time lows, in your purse, in your car, etc. There are times you need something quick. Also, keep with it a snack with protein (such as nuts) to follow up a sugar low. If you just eat sugar, your glucose level will rise quickly, but fall back down quickly.
Be diligent on doctor visits. Unfortunately, living without a pancreas can be taxing on the body. Due to the complicated re-working of your intestines, you will not digest and absorb as a normal body would. This can cause malabsorption issues, even with enzyme supplements being taken, and can lead to the lack of important nutrients the body needs. This can affect other organs such as your kidneys. Regular blood work/tests should be taken to monitor these things, along with monitoring your liver since it is the new house for your islet cells. You may need extra immunizations if you had your spleen removed, and you may need to monitor specific vitamins (this surgery can cause deficiencies in many vitamins including A, D, E, and K). You will likely have a GI, Endocrinologist or Diabetes Educator, and Family Doctor or Intern to see regularly. You may also have Dietitians, Urologists, and other doctors to monitor your care. Always have regular dental and eye check-ups (as everyone should). Yep, you may have to go to many doctors, but by being proactive you can do your best at optimizing your health.
Seek Counseling: This surgery (and the life you will lead from its consequences) can cause a lot of stress and mood changes. Not only are your hormones and physical body affected/changed drastically, you also will have gone through trauma even if your surgery did not come with many severe complications. It can bring so many emotions - fear, anxiety, anger, and frustration. You will have some sadness and depression, and many even have symptoms of post traumatic stress. Don't be afraid to ask for help.
Eat healthy and live healthy. No, it won't always keep you perfectly healthy, but it sure will help. Eating low carb and mainly whole, nutritious, unprocessed foods is important for anyone, but especially us. It is certainly not always easy, and sometimes impossible, but for the most part, try to include these foods in the majority of your diet. We have already lost a few organs; we need to take care of the rest. Eating like a diabetic is necessary, even if you are not insulin dependent. Stay active and talk to your doctor about an exercise plan. Personally, I need exercise more for my mind than just my body. It can help you cope with the stress of your life and the overwhelming tasks of living pancreas-free. Don't push yourself too hard, though, and go slow especially during time of illness or recovery.
Careful counting carbs. You should have been taught to count carbs as soon as you had the surgery. There are many apps these days to help count carbs quickly, or even simply googling a food will usually show the amount of carbs it contains. As a side-note, be careful with artificial sweeteners. People can react differently to them, and they can also cause diarrhea if consumed a lot.
Get used to a new normal. That is not always easy to do. Some days I still want to be my "old normal" self again. Unfortunately, you will have to deal with life-changing side-effects from this surgery for the rest of your life. Your body may not deal with the surgery well, and you may be left with severe diabetes or a very poor digestive system. It may never get completely better. That can be hard to swallow and accept. You may have to take some time finding out what your new normal looks like or will be. Your body may not allow you to do the things you used to do before you became ill. Some of your old goals may no longer be attainable, but maybe you will find new one's that you never thought of before.
Let others help you. It can be hard, but letting others help you is sometimes necessary. Help with remembering all your medications, visits to doctors, or even chores or errands that you cannot get to at that time can be so very useful. There may be times your body is not able to do what you need, so ask... there is usually someone who can help. (I'm not always good at this one.)
Everyone heals different. There are some people who have this surgery and bounce back quicker than others, but for most of us, recovery is slow. Some require feeding tubes even after surgery, some do not. Some have lost a lot of weight, some not so much. Some have been on high doses of pain medication for a long period of time, while others have not. Just know that every person is different and their circumstances are different. Try not to compare your healing to someone else.
*Note: It is not easy to remember all of these tips all of the time! It helps me to re-read this page once in a while to remind myself of the encouragement and diligence we must maintain in order to thrive despite the challenges we face. And we can thrive