Back from Minnesota


#1

Hello All,
I got back from Minnesota the day before Thanksgiving. They did an EUS and an ERCP. They couldn’t tell from the EUS if I had acute or chronic pancreatitis because I went in with pancreatitis and the results were scewed from the inflammation. I was happy and very angry with the results of the ERCP. It showed a stricture in the my tube by my minor papilla. I had a stent put in my minor papilla in Wisconsin over the summer and the doctors in Minnesota think the doctors in Wisconsin caused the stricture. Now, we have to start over at square one to fix the stricture. I got back in two weeks for another stent placement. Then again in about 6 weeks. I am happy they found an answer to my problems, but will this fix it for awhile? Dr. Freeman thinks this will help me feel much better but there is only a 50% chance that this will do it for awhile. I am not thinking about a pancreatectomy right now and Dr. Freeman apologized for suggesting it at this point. He realized how scared I was and how the idea wasn’t relevant at this point in my life. I didn’t get to spend Thanksgiving with my family so I am a bit upset about that. My family Christmas party is in two weeks right after my second stent placement too, so I will miss that as well. This is a horrible disease and I am thinking about all of you! Hope you had a nice Thanksgiving!


#2

I am glad things went well. I hope the stents do give you some relief.

Did the ERCP give better results for determining acute or chronic? I am asking only because I had an EUS last Jan. and they only found 2 markers for chronic~so I remain “acute recurrant”. But I have my first ERCP scheduled for Jan '09 and wonder if the results will be more clear.

Keep us posted as to the next procedures. I am sorry you will be missing many family things this holiday, but I do hope that this will make all of these procedures worth your while!

Take care,
Keri


#3

Sounds to me as if you need lots of love and prayers. I am sure sendingboth! I know what it’s like to be in the hospital during a holiday. Ugh! Chin up- It will get better! Try to be positive and good for you that you expressed your concerns to Dr. Freeman! You are brave and strong!

Hang in there,Sweetie

Love,
Jackie


#4

Thanks both of you. Keke - no the ERCP didn’t give me more insight as to if I had acute or chronic. Not sure about this, but I will ask again in two weeks. Good luck to you!


#6

Vonnie,
Your going to be in MN on the 11th?? I am also, I am having my islet transplant that day… good luck on everything!! I know what you mean about stress and pancreatitis, I have been under a lot of stress lately with work and what not, and i am VERY scared about this surgery…


#8

I have had 10 stents. The very first one I had caused some problems, but once we worked our way through that I was good for another 4 years. In 2007 I had 9 stents. I do feel somewhat better, but it is still not the best.

What I want to say to ALL of you. DO NOT WAIT TO SEE THE DOCTOR. I did that both times and it caused major problems. You know when you are in trouble, Listen to you body, do NOT think it will go away or WAIT thinking there will be a better time to get it done. Do it now!!!

Take it from a person that has postponed and delayed because I thought I didn’t have the time, didn’t want to disrupt the holidays, had too many other important things to do. THOSE THOUGHTS AND IDEAS ONLY HELP TO WORSEN YOUR CONDITION. Delaying DOES NOT HELP.

Please excuse my insistence, but I feel very strongly about all of this. Sometimes we are our own worst enemies. I have an ERCP scheduled for the 11th and want desperately to cancel, but have learned the hard way that delay means more pain and procedures. And sometimes hospitalization because I waited too long.

OK I’m off my soap box now. Take care of yourselves!!!

Keep the Fiath and God Bless,

Vonnie


#9

Thanks for the advice!

I’m actually sitting in the waiting room at Stanford Hospital waiting for my GI to do an EUS on me. I lucked out and was able to get one scheduled in under a week! Who ever heard of that?

Anyway, hoping the test helps get to the root of me pancreatitis, but not holding my breath.

Hope everyone is doing ok today.

Archer


#10

Volup,
Wow, your story sounds so interesting. Why did you have stents to begin with? What was your problem down by the pancreas? Do you agree with the stent placements then? Where do you go for the stent placements? Are you able to eat a good amount of food and get some lengthy time where you feel good? What is feeling good for you? How much damage has the stent placements, time elapsed, etc. done to your pancreas/body? I know I have so many questions, but this is so fresh for me and I am just trying to learn as much as I can to help me. Thanks and best of luck to you on the 11th!
Danielle


#11

Danielle -

Something special about having stent placement from Dr. Freeman. He uses special stents that he specifically designed for use with ERCPs to reduce the chances or severity of post ERCP pancreatitis. A great deal of his practice involves clinical research, which involves the development of new instruments and techniques being tested for FDA approval. For example, he is still one of the few doctors who perform manometry tests during ERCP’s because he worked with the manufacturer to design the technique - now it is in practice in other places and was the ONLY reason that they finally determined the cause of my pancreatitis. Not all stents are created equal and doctors have different perspectives on the best way to use them. I know that my GI doctor at home is very cautious about using them if he doesn’t have a very clear explanation on why they would help the patient. Which is why I did not have any ERCP’s until he sent me to see Dr. Freeman and the manometry test could be done in conjunction with the ERCP.

The point of the story is that you need to TRUST that your doctor isn’t just doing an ERCP because they can’t think of anything else - ERCP’s cause stress on your body and your pancreas and the decision should consider the whole patient and a clear goal should be identified. An EUS or MRCP are much less invasive procedures and do not cause as much stress to your body.

The stents that Dr. Freeman used with my ERCP were designed to help keep the pancreatic and bile ducts open post procedure because he made cuts in the openings (not a complete sphincterotomy) to help decrease the pressure because my ducts are too small. He insisted that they both be removed in two weeks after the ERCP which I had done back in Nebraska with my regular GI doc. I went in for an x-ray in the morning to see if they were still in place. The bile duct stent had fallen out which is typical. The stent in the pancreatic duct was still in place so I had an endoscopy to have it removed. Pretty simple and my doc even gave me the stent as a souvenir! hehe

Anyhow, two days after that, I was at a tailgate party for a Nebraska Football game and ATE A BRATWURST and had a glass of Guinness. Since then, it has been smooth sailing. i haven’t even had a case of the sniffles! I was always catching everything but now that my system isn’t run down, the only thing I have to deal with is the occasional tension headache.

Cheers,
Amanda


#12

Amanda,
Thanks for the post…inspiring. You are one lucky lady to drink Guinness and eat a bratwurst. If I drank alcohol, I would surely be in the ER. I tried doing that last year (one beer), and I woke up with a severe attack. I have been seeing Dr. Freeman for my stents, so I guess I’m in good hands. For right now, he put in a soft stent to try to keep the tube open (seems how I now have a stricture). Then, I go back on the 12th of December for another placement. During that placement he is going to put two stents in a cross pattern. Then, I will go back again in 4-7 weeks to have another placement. I am not sure about all this, but I have to trust someone. I have been living a nightmare for the past few months. And needless to say, there was nothing I could’ve done to prevent it. I ate pretty much nothing and I slept as much as I could. This all started only a year ago at the mere age of 27 and my life has changed so much. I have been feeling pretty good in the past few days, so maybe Dr. Freeman is my blessing! I am keeping my hopes up to have a similar experience as you or maybe Volup (who got 4 years out of the stents). I would take any amount of relief time at this point.

I just wish I knew why my pancreas acted up to begin with. The stricture was caused by a previous doctor during a previous ERCP. So, what is the underlying cause from the start?? I hope that this new path works because I am just not ready to discuss pancreatectomy or other drastic approaches. Especially, when they say my pancreas is pretty normal. Well, they couldn’t quite see it because of the inflammation of pancreatitis, but they think it’s okay. What is causing the inflammation?

I am sure you all have similar questions. You would think in this day and age, they would have better answers and treatment. Everyone at my work doesn’t understand why they can’t just keep a stent in my tube forever. They can for the heart and other organs. We should all quite are jobs and study this together…ha ha, but wouldn’t that be nice to get our lives back and help others around the world? My outlook on life has changed so much. I feel so sorry for people who are sick and suffering. Life seems so unfair.

Thanks for listening. Have a great day! Enjoy the days that are good-that’s my new focus.

Danielle


#13

You could ask Dr. Freeman about this, but I would bet that he is unwilling to speculate about the original cause of the pancreatitis due to your current condition - since you had a bad ERCP, it will be hard to know what is really wrong at this point.

Trust that you are in good hands. Dr. Freeman took really good care of me and changed my life in a matter of DAYS. I am only 31, and my problems really got serious within the last 5 years - mysterious attacks of nausea, etc…But my mom said that when I was in school she remembers getting calls from the nurses office after lunch saying that I was in the office with a stomach ache. I remember that a little bit too - and the nurses telling me that I was just faking it to get out of class. Going through the series of doctors during my teen years that said I had Irritable Bowel Syndrome or others that said I was lactose intolerant, or that it was all in my head.

You all know what I’m talking about, right?? :slight_smile: I think I just stopped going to the doctors for my stomach pains at some point. Then, you finally find a doctor who takes you seriously and wants to find things out and things begin to change.

I’ll tell you something - you sure are thankful for your health once you get it back. Unbelievably happy.

Amanda


#14

My pancreatitis, I believe, is stress induced. Both times I was in a very stressful place in my life.

The first time I was jaundiced when I woke up the morning of my procedure. I was going to cancel it, but felt God urging me to go have it done. I’m thankful I listened. The doctor told me that I was within a month of losing my pancreas. I was shocked. I didn’t even know you could live without a pancreas. But ten days later when they took it out I developed two cysts that landed me in the hospital for 2 weeks on IV’s and a morphine pump. (I was supposed to get the ERCP done in July and kept rescheduling until that morning in Sept.) After I got out of the hospital I slowly started gaining weight. (I had lost 25 lbs during that ordeal).

Everything went well for about 4 years, then another stressful situation and I knew I was in trouble. I went to the doc in March(?) I know it was in the spring. They did and EUS and MRI and couldn’t find anything out of the ordinary. So lived with it through the summer and finally in the fall went back in and said DO SOMETHING! Well once again I waited too long and I spent the next 13 months in and out of ERCP’s. Lost 25 lbs on that round also.

I did change doctors and he told me on a scale of 1-5 my pancreas is at a 4. So the procedure on the 11th is to determine how bad I am.

I too believe in caution and am very interested in hanging onto my pancreas for as long as I can. Stent placement does cause damage every time you do it. If I had gone in when I knew I should have. Let’s face it, we know when we are in trouble, and insisted that they do something then I think I might not be as far down the road as I am now. Doctors are very conservative about putting in stents because they do damage.

There are several types of stents. Ask the doctor what kind he is using. I don’t know if different stents are used for different problems or if it is what the doctor is comfortable with.

My problem is duct strictures in very hard to get to places. Mostly in the head of the pancreas. So my pain is mostly on the right side. I have some left side pain, but it is not as severe. They can slip. I have two that slipped. I felt each one of them go.

I have had sphincterotomies and believe it may be time for another one. But we will find all of that out on the eleventh.

So now you know why I am so insistent that you get to the doctor early on. Believe me, you do not want to go through what I have because of fear, stubborness or denial. The earlier they catch this the better your chances of hanging onto your pancreas for a longer period of time. (MY personal opinion)

But I also have to say, that my God is an AWESOME GOD. He has led me through the valley and kept me at peace through the storms. He has been my Rock, my Savior, my Peace. I just praise His Holy Name.

Keep the Fiath and God Bless,
Vonnie


#15

Ohio,
I am going to MN on the 12th for my second stent placement. I will be staying at the University too on floor 6B. I hate how they do not have private rooms. Maybe we will be roommates. Wouldn’t that be ironic?
Danielle


#16

It would be impossible to NOT be stressed out in your situation Ohio - but remember, Dr. Sutherland is the number one doc for this procedure. He has trained 90% of the surgeons in the world who perform it. He is the one who worked to develop the procedure.

Will you be at Hennepin County? I had great nurses there and they have private rooms. I was only there for a couple days though and i know you will have to stay longer than that.

Amanda


#17

Amanda,
I don’t think I will be there. My understanding is that I am going to be at University of MN on the transplant floor which is 6B. I will be there they said for 2-3 weeks thats IF i don’t have a complication.
How are you feeling now?


#18

DD1,
Yeah that would be cool. I heard that when you go in for surgery or what not, you can request your own room. I feel better if i am in a room by myself and I feel I heal better. Also, If they don’t have a private room they can put you with a roommate when they have a room open they will move you…I have had 2 stent placements and it did NOTHING for me… within a month i was back at Indiana University(thats who made me go to MN for my transplant) said you have two options you cab do a feeding tube or transplant of course i said feeding tube first that only lasted a month and i had one replaced and then it fell out 2 days later. Dr. Sutherland had told me when people have feeding tubes very rarely does it work but i wanted to try all options… Have you had a ERCP with mam? I had one at IU and thats what discovered my chronic pancreatitis… I am in the beginning stages of it but its to the part that i can’t even stand it anymore so before mine gets worse i am doing this… I am so sick of going through another test each month that i hope and pray will work and NEVER does. Thats why I am so scared to take the transplant because i have had not had any good results from all the other things… I am sure your kind of in the same boat


#19

Ohio,
I requested my own room last time and it didn’t happen. Maybe I need to be more firm this time. That would be so nice because last time I didn’t sleep a wink. I have a stricture in my tube so they are trying stents. I am hopeful!


#20

Vonnie,

You are in my prayers. I will be praying you through the 11th!

Love to you,
Jackie


#21

Before they did the ERCP did they do a Endoscopy with ultrasound?
Did it show anything prior to your ERCP?

Hugs,
Jackie