I have been through alot.......I posted about some of it here and there but alot of it I kept quiet about, kept it to myself. I am a member of several groups regarding pancreatitis and how to live with it, life without a pancreas, etc. and more and more I see people joining who have the same problems I use to live with and I see people out there as scared and sick as I use to be. I try to help...but never sure if I am doing or saying enough...thought maybe this blog might help some of them. I have contacted tv shows and newspapers hoping to tell my story, not for fame or fortune but so people know there is always hope no matter what, there is always hope.
For me, it was April 2002, was asleep and woke up to severe stomach pain, nothing I had ever felt before. So I got up and sat in chair for a couple hours as the pain got worse and worse. Started scareing me a little bit so I woke my boyfriend up and said something was wrong, thought I should probably go to the Emergency Room. So he took me. This was 7 am. Got to the ER and told him I thought if I tried to get up and walk in I would surely pass out. Trust me I had never experienced pain like this and I hate bringing attention to myself and all that so when I said I cannot walk in I was not exaggerating. So they wheel me in to the ER. They ran tests, took xrays, etc. the Dr. came in said nothing was wrong with me and I could go home. I grabbed my boyfriends hand and told him something was wrong.......well he actually golfed with this ER doctor and he told the ER doctor and he told the ER doc that i am never sick and something was wrong. So ER Doctor reluctantly agreed to keep me observation overnight.
So I went up to the 5th floor. Pain continued to get worse. It got so bad that I found if I laid on my left side in a certain position I could tolerate it, moving was excruciating. Still they waited. They called my physician a few times, she never ordered pain meds she did order a tox screen. You know i might be doing all this just for pain meds. Unbelieveable. I will share more of this experience later. I want to get to the meat of it all first.
So long story short, they transferred me to ICU at like 3 am, my blood pressure had dropped to like 30 over 50. I was not doing so good. Still they waited and finally at 9 am they called in a surgeon. Dr. K. He did a cat scan. during cat scan as I was laying there more than half out of it. Doctors told nurses well we have to operate. you guys waited too long to call me and this woman will never come off the table. but to CYA we need to operate. So he did. I am guessing since he assumed I would not make it that he kind of did a slop job. He knicked my pancreas while removing my spleen. My spleen had ruptured and I was bleeding internally. I actually did die, they shocked me back did the surgery and somehow, some miracle for some reason here I obviously made it. Dr. K even came in a couple days later and said he had no idea how or why I was still here. After the surgery I needed 8 units of blood, I had lost so much blood. So....after quite a few days in ICU and then in step down and then in regular room I got to go home.
About a week or so later.....i had stomach pain and just assumed it was from the surgery, etc. a few months later the pain got worse and worse. I went to the local ER they said nothing wrong, even said I was probably just constipated. ha! not the case. After several trips to the ER and changing doctors, finally had a dr. do further testing on me. Found out for the first time I had something called pancreatitis. That was the first episode.
That first year there were just 2 attacks. the next year there were about 5. I didnt understand what the hell was happening. Of course, you went through all the crap....ER checking to make sure you werent there for pain meds, people assuming you were an alcoholic, etc.
In 2006 I spent a total of about 165 days in the hospital with pancreatitis episodes. This did not even include the 30 day stint i had to spend in the nursing home...or was supposed to spend....lol.. By now I was searching for help. I needed help, I wanted solutions, I wanted answers, i wanted my life back again. My doctors had suggested going on percocet, 10 mg (more if needed) 4 times a day. I refused. i had heard so many stories of the people who got hooked on it and the horrible time they had getting off of it. i saved the pain pills for the worst of times, took them to sleep they never took the pain away anyways.
Doctors here, doctors at OSU and Cleveland Clinic told me I needed to learn to live with it. To expect at least six flareups or more a year and learn to accept my new life. This to me was unacceptable. How is it living if you are in the hospital all the time. How is it living if you cant work, you cant plan things, cause you never know when you are going to have a flare.
I will cover guilt later too, but my God. Everytime I had a flare up, I knew what it was, I would stop eating, just sipping what I needed to sip, and tried like hell to make it go away at home, when i got to the point where I could not go five minutes without pukeing or dry heaving, and the pain had become overwhelming, I reluctantly would give up and go to the ER......and of course me admitted usually for no less than 10 days. Funny when I was at home I wanted my kids to have a normal life I would hide it, try to hide it, lol, try to act like things were fine. Then I would finally realize I had to go. There were a few times where I was told I had just about waited til it was too late. Some nights I swear to you I would cry myself to sleep and hope and pray I would just not wake up. Seemed easier, you know?
So I started researching pancreatitis and cures and solutions on the internet. I found a clinic in Cincinnati at the University of Cincinnati. UC Pancreas Clinic and I called and they agreed to see me. What a blessing. After going through the intial exams and all of that they realized there was not an easy solution and I was introduced to the doctor who would eventually save my life. Dr. Syed Ahmad, from Univ of Cincinnati!! WONDERFUL EXTRAORDINaRY MAN!
He offered a solution, total pancreatectomy with islet cell transplant. However the way the hospital was set up and insurance and all, it would cost me about $25,000 out of pocket....$$ i did not have. One thing you learn about chronic illness it takes everything it possibly can away from you. Money, friends, jobs, life!! I kept having attacks and it seemed most of the damage was in the tail of my pancreas. So Dr. Ahmad offered me a surgery known as the Whipple. So we did it. I will write more about this later, too. In a different blog, i wanted this blog to be an introduction and didnt want to give you all the information at once and bore you to death, lol.
So i had the whipple and I will tell you this, its one hell of a surgery and its the hardest recovery i have ever been through. I had the Whipple in October....I was starting to recover well by March and was feeling half way back to normal by April. it was tough. I had a few months of pain free living. Then in about August it came back with a vengeance. Right back to where I was, Chronic Pancreatitis here we go again.
By this time the hospital had changed and the insurance had changed and i qualified for the Total PAncreatectomy with islet cell transplant. It was gonna happen in May. Luckily, Dr. Ahmad, was worried I would eventually get to that point and when he did the Whipple he did it so that a total pancreatectomy could be performed without alot of trouble or risk.
While the recovery for this surgery was not quite as hard it was long and when they tell you it takes a year to recover believe them and dont be too ahrd on yourself and just learn to take it one day at a time.
For all the people reading this that are facing this surgery, I want you to know a few things:
Being scared and nervous aobut this surgery is normal, it is to be expected. you are going into something that is scary, has its own risks and you know going in that you will be changed coming out. Diabetes is something you are facing as well. none of it is easy and its scary as hell. Up until the morning of my surgery I was ready to turn tail and run away. I was scared to death even on the morning we drove down to Cinci for hte surgery I was ready to turn around and go back home, checking in at the desk on the day of the surgery, I seriously considered saying sorry I changed my mind, every single cell in my body was telling me to run. Scared Shitless is an understatement. running away would be the easy part...staying was the hard part.
Take your time in recovery. But when they come in and tell you to get up and moving a few hours after you wake up from this surgery, lol.....yep you are going to think the nurse has oviously flipped her lid, you have so many things hooked up to you you need at least 2 iv poles. and you first thought is how in the hell do u expect me to get up, I look like a sick science experiment that went horribly wrong!! But do it. trust me...do it. they want you to get up and sit in a chair, even if its just for a few minutes...just do it. I did it, and I sat there for about 4 hours. it was great and I felt like i had my first victory, lol.
The one thing I noticed when I first woke up from the surgery!! That constant pain that felt like it was drilling through me every single day was gone...I could not believe it....even with the pain from the incision I could tell that that constant, driving stabbing horrible pain was gone. Another victory.
Next morning...guess what you gotta get up and walk..yep with 3 iv poles and what looks like 100 wires and tubes coming from everywhere. DO IT!! just do a little at first and then push your way through it. The day I left the hospital I walked a total of 4 miles....yep!! round and round that wonderful hallway. The walking helps trust me. it gets things going and moving and makes ur feel better and stronger and each lap feels like a victory.
Life after the surgery...yep its different, yep you may have to tkae insulin, you will definitely need to take your enzymes, etc. Just do it. Even with all that its still a hell of a lot better life than you had before. Its basically pain free and your not vomiting and in agony anymore. Do I have bad days, yep sure do. but even my worst day now is better than my best day before.
I will not lie and I will write about the setbacks later, there have been a couple. 2 yrs after the TP/ICT I got sick. long story short.....had a blockage caused by scar tissue from all of the surgeries. And there I was again having another abdominal surgery. It sucked but I did it and recovered and here I am again.
Lots of things have changed....on a bright side, i have lost alot of weight and feel good about it, I have not lost too much, I was heavy, too heavy. I have gone from a size 20/22 to a size 10. I am on Byetta, 2 injections a day just 5mcg each. Not a huge dose at all. My islet cells are happy and doing great in my liver. My last A1C was 5!! and that is awesome especially for someone without a pancreas.
To this day I still hear from Doctors, nurses, people, oh I didnt knwo you could live without your pancreas. lol. YES YOU Can!! and I can eat pretty much what I want. I watch the sweets obviously and for me i hate diet stuff so i gave up sweets, I dont do diet pop, i dont use saccharin or the other fake stuff either if it needs it I dont eat it, simple as that.
So when you are facing this choice and you are scared and you dont know what to do and every single cell of your being is telling you to run run run........its ok...its gonna be ok. think of pleasant things, think of not having that pain you know the one, the pain that starts around your stomach under your ribcage and then it radiates through to your back as if you were impaled on a rod. that deep pain that is almost difficult to point to it as it is in the center of you. That relentless, ever consuming pain with a burning sensation, sometimes almost a gnawing, grinding type pain. I would often describe it as feeling like there was a basketball in my gut that was being inflated and pushing up into my ribs, through my back, while someone had a wide belt under my rib cage and was continuously tightening it.......etc...
I will also tell anyone facing this surgery or this disease.....you want to talk, you need to talk, please feel free to contact me, i will call you, email you, whatever I can do to help you. I am here.
I think that is enough for tonight. I will write more tomorrow, and begin from the start and proceed...I hope I am able to help at least one person through this blog.
I know through my groups I have met so many wonderful wonderufl people!! Some I will probably never get to meet in person.....some I have already met in person and all of whom I pray for. If you have been diagnosed iwth Chronic pancreatitis...do not lose hope...there are options and these options work!! if they didnt I would not be here today!! :)
Thanks for reading!! Take care and I hope you have a pain free night!
~Mary~
