I’ve been living with Pancreatitis for almost five years now and in some ways it hasn’t changed anything and in other ways it has changed everything.
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Living With Pancreatitis
Although it seems like I am starting to understand a bit better how to limit the number of acute attacks that I have there is still the constant everyday pain from chronic pancreatitis.
It affects how and when I eat and has made it impossible to hold down any regular job. The attacks can come if I eat the wrong things, take the wrong prescriptions, twist the wrong way, or any number of other things.
I’ve even had one acute pancreatitis flare up that happened because one of our cats decided to use my upper abdomen as a jumping board to try and catch a fly when I was sleeping. I’m not sure if he ever caught the fly but I ended up in the hospital the next day.
The stress from knowing that you could have a flare up at anytime can be disconcerting, which along with the stress of daily life can also lead to an attack.
My energy levels are also affected. I seem to be tired a lot and sleep more plus I have lower energy even right after I wake up. On average I have about 4 good hours a day that I can do things even when I’m not hurting too bad.
On bad days when I’m hurting Forget about doing anything.
Pancreatitis and Diabetes
Along the way I’ve also developed Diabetes as my pancreas has become less able to produce insulin. I’ve had to change the way that I eat and how I eat.
So now I take more pills for the Diabetes and have to take insulin shots twice a day. My fingers look like pin cushions from testing my blood sugar levels all the time.
I guess it could be worse though. I’ve read about people that have had their pancreas taken out because of the intense pain from pancreatitis and have become Type 1 diabetics.
Every time that I have a flare up I have to watch my blood sugar carefully because it soars.
My Doctors and Pancreatitis
In many ways I think that I’ve been lucky and have met some really good Doctors that are taking exceptional care of me.
I have a GI Doctor for my Pancreatitis, a Endocrinologist for my Diabetes and a General Practitioner who tries to keep everything coordinated.
A lot of my time is spent with Doctor appointments and tests.
Early on I had my Gall Bladder removed but that hasn’t really made too much difference.
My Pain Plan For Pancreatitis Attacks
My GP and I have come up with a plan that helps me handle the pain involved in living with pancreatitis.
When I first start to feel the pain I take an Ibuprofen. If that doesn’t help I’ll take an Indocin. Both of these are anti-inflammatory that we hope will help to cool the Pancreas but still aren’t opiates.
I’ll also stop eating anything for a while to keep the Pancreas from having to work at digesting the food.
If the pain continues to increase I’ll use my Percocet and usually go to bed hoping that minimizing my movements will help make my Pancreas settle down.
If all else fails and the pain continues to rise I’ll go to the hospital. There I can get Dilaudid which always helps the pain.
I hate taking the opiates like Percocet and Dilaudid but the pain becomes so excruciating that I have no choice. The Dilaudid is given to me intravenously at the hospital.
When I get to the hospital with a full on attack I am usually in so much pain that I can hardly talk. I just feel like curling up in a ball in some corner and crying.
But I know that I need to convince the ER Doctor that I am truly in pain and not just drug seeking.
So I have my spiel about what is happening and what has happened before. I’ve found that Doctors don’t like being told what is going on, they rely on their examinations and tests to diagnose you but the more information that you can give them the more they can help.
I guess their cynicism is good but when I am in a full on attack I just want to speed things along as much as I can so I can get the relief pain meds will give me.
Hospital Stays With Pancreatitis
I think that I am up to 19 trips to the ER and that many stays in the hospital ranging from a few days to more than a week.
I’ve met a lot of caring and nice nurses while I was in the hospital but also ran into one Doctor who wouldn’t listen to anything that I said, instead insisting on doing things her way. That stay was so painful that I am almost scared to go back to the hospital again.
When you go into the hospital, at least on my insurance plan, you don’t get your regular Doctors but a team that will treat you while you are in the hospital. And they don’t always understand what it’s like living with Pancreatitis.
Thankfully my regular Doctors have since come up with a treatment plan for the next time I am in the hospital. Hopefully that will help.
Along the way I learned that the first thing you need to do when you get into the ER is convince them that you are in actual pain and not just drug seeking.
Still they can sometimes be a little stingy on the pain meds until your lab results come back.
I’ve also learned that for whatever reason it seems to help if you can convince them that you aren’t an alcoholic that caused the attack by drinking.
Pancreatitis and Family
Although I’m not real close to my family I do have a close circle of friends and a partner that supports me so I guess I’m lucky.
I’ve read in some groups where the partner/husband/wife doesn’t understand or support the person who is living with Pancreatitis.
In a way I can understand this attitude. From the outside, if you don’t know my history or been around during the Acute Pancreatitis attacks, I look like a normal fit 59 year old.
But the last time I was in the hospital with a severe Acute Pancreatitis attack I lost 30 lbs before everything was back to normal. Then it took me another month to get my feet back under me again.
It takes a certain level of caring and love to see through the mask that I try to keep in place to keep myself positive and ready to face another day.
So I guess I am lucky because I have people that understand what I am going through and love me. Living with Pancreatitis is hard, and there is a good chance that it will get harder.
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