My story of Pancreatitis

Pancreatitis
#1

Hello, My name is Kristyn Brill I am from Ohio. In August of 2007, I was diagnosed with Acute Pancreatitis my lipase level was 1300 and I was immediately sent to the hospital for pancreas rest. I then was released and it wasn’t a couple days later I was back in the hospital for a week. The doctors did testing to make sure it wasn’t my gallbladder, that came out normal they did an ERCP and placed a stint in, that only lasted for 24 hrs because he caused more pancreatitis and I was still having flare ups so he decided to take out my gallbladder thinking maybe something is wrong and the tests just isn’t showing anything. They took that out and released me the next day. I still did not feel right I continued to get lipase checked and about a week later my lipase was back up… He told me if my levels continue to increase he was referring me to University of Indiana where I was seeing Dr. Lee McHenry. (WONDERFUL DOC) I went and had a consult with him and he told me I need pancreas rest and the only way to do that is with TPN for 30 days, I laughed and thought he was joking but he wasn’t… I did that for a month and got just about 5 months pain free and then in May 2008 I was back in his office with pain and reaccurance. He said I will perform an ERCP and check your pressures and do a Sphincterotomy. He put a stint in and not even 4-5 days after that I was having pain again.

June 28, 2008 I was back in his office and this time I had a flare up in his office and was crying and he said, the only way to fix this is if I sent you to University of MN to Dr. Sutherland and you have pancreas islet transplant. I immediately was in shock and started crying. Why? he said because if you don’t do that and you just sit here you will die because you have Chronic Pancreatitis. For bypass time, they did insert a feeding tube July 16, 2008 that was supposed to be in till October. by Augst 21 I went and had appointment with my Pain management doc there at IU and I ended up with an Infection the whole month I had my tube. They inserted another tube because of the infection on that same day. I went home that night and 2 days later my tube fell out… Now I am just sitting here until my surgery with Dr. Sutherland that would be possibly November/December. I am flying out to MN and have a consult with Sutherland on the 16th of September… Wish me luck hopefully i can get something fixed… I am VERY Nervous.

#2

Amanda,
Have fun with the ERCP i have gone through 2 and they are not fun. But I have heard University of MN is a good place. I have read in some of your replies there is a show about pancreatitis going to be on TV? when and where and what time? I would like to see that. What’s the name of the show?

#3

I am praying for you. All will be well. All of us are standing right beside
you! Feel love and our prayers.
Jackie

#4

Your story is very similar to mine…although my highest lipaze number was 36,000!! Over 5 month period, spent 8 weeks in the hospital including gall bladder surgery and two ERCP’s (without dye). Have found that limiting fat intake to 20 grams or less a day, one injection a day of sandostatin and 2 enzyme pills before each meal - is the key for me in staying out of the hospital. It is somewhat difficult (have to plan and track intake) but no pain or pain drugs! Thoughts and prayers.

#5

I am going to be at U of M on the 16th for a MRCP and on17th for my first ERCP! Small world.

Your condition sounds much more severe than mine. But while I was researching the U of M, Dr Sutherland’s name popped up a lot, I am seeing Dr Freeman who focuses more on acute pancreatitis. Anyhow, Sutherland is highly regarded for his work with islet cell transplants!

Hang in there!
Amanda

#6

The show is a PBS pledge program called “The Last Lecture: Really Achieving Your Childhood Dreams” - it isn’t a show about pancreatitis. Randy Pausch gave this lecture when he found out he was dying from Pancreatic cancer. In the 18 months from his diagnosis to his death this July, he fought hard to advocate for more research specifically in the area of the pancreas through the Pancreas Action Network. And, anyone who watched Stand up to Cancer on Friday night, did you know that Patrick Swayze has been diagnosed with pancreatic cancer?

Since this is a special “pledge” program, it is not part of the PBS common carriage schedule. Unfortunately, here in Nebraska it will be shown this Saturday (Sept 13) at 10 p.m. Not the best time slot. To check when it is going to be on in your area, you can go to pbs.org and it will ask you for your zip code and will show you the schedule for your area.

And for the ERCP, I know that people have had problems afterwards with them before but I am optimistic. I don’t have it as severe as a lot of you (although I have dropped ten pounds in the last week). Dr. Freeman’s published research is specific to preventing flare ups after ERCP’s in patients with acute pancreatitis so I think that is a good sign!

As for you - I think someone else on this board has been to U of M for Islet Cell transplant recently and has been doing really well with it. And, I don’t know if Sutherland’s office gave you information about hotels and things, but make sure you ask for the hospital discount - it really helps!

Amanda

#7

Joe M. just had the surgery done. You can contact him. I know he will be glad to tell you all about it and give you encouragement.

I have had many, many ERCP’s. Last year I had 7-8. They are painful, but it sure helped me. I am fighting to keep my pancreas. Some doctors are more than happy to work with you to try to do that.

Having said that, each person is different. If you trust your doctor or even if you don’t, It doesn’t hurt to get a second opinion.

God Speed, Keep the Faith,

Vonnie

#8

Volup,
I had a couple ERCP’s and they helped for a couple days and that is it. they would explain why my conditon has turned into Chronic Pancreatitis… They said the only thing that would help cure my chronic pancreatitis is the islet transplant. I have had 2 second opinions and both docs has told me thats what is next in line because i have had to many surgries noone wants to do anymore unless it’s the islet…
so you refuse to have the islet transplant??

#9

Ohio,

I don’t refuse to have the transplant.

I just don’t feel that it is necessary at this time, niether does my doctor. I know that the more ERCP’s that you have the more damage is done to the pancreas.

I am able to eat and keep my weight up. I am in pain off and on during the day, but Tylenol seems to help. I don’t need pain pills. So my condition is very different from yours.

My doctor and I are very conservative in our approach. I have had three organs removed and am fighting to keep my pancreas. I have 6 granchildren that I hope to see married (they are 8 yrs old and down). I believe that taking out the pancreas shortens your life span. I don’t know by how much.
Having said that I also believe that GOD IS IN CONTROL. If the time comes that my doctor says to me IT IS TIME, I’ll be there to have it done.

Each one of us is different. My pancreatic duct kept closing up and that is why I had so many ERCP’s.

I also believe that the removal may be better than the Puestow. I see the puestow as pretty archaic. I don’t think my doctor would ever agree to have that done. And from what I have heard it is chancy that it helps. I do know there are a couple of people in this group that have had it done.

It would be interesting to hear from them to see how well it is working.

But the bottom line is this - You have to do what is best for you. If you have had that many opinions then go for it. I will keep you in my prayers and pray for the absolute best for you.

So friend, keep the Faith and God Bless. I will keep your medical team in my prayers also.

Vonnie

#10

I found a link to this website today when I was on the Minnesota Pancreas and Liver Center website… http://www.top5plus5.com/Index.html

Good source of a lot of information specific to pancreatitis! I usually am the champ of mining information on the internet but this is the first time I have come across it so it must not be listed high on any search engines.

Amanda

#11

Hi Kristin,
This Is joe i had the surgery on May 16 with Dr. Sutherland he is a great Dr. He gave me back my life. Dr. Sutheerland and his staff are great i can not say enogh good things about him and his staff. Also the nurse on 6b at the hospital were you will be after your sugery are great. I have a hole new life now after the sugery. The frist couple of weeks are hard but after that it gets a lot better. I’m pretty much out of pain and off all my pain meds. My Itel cells are now waking up and doing good. If you have any qustion just ask I would do it all over again if i had to ,
have a great day.
Joe

#12

Amanda,

I went to the website you gave us. It was very informative. I downloaded 3 books. Thanks for the info.

Vonnie