Anyone else lived through necrotizing hemorhagic pancreatitis as a child?

Pancreatitis
#1

Hello to all,

I have been sitting here reading with tears flowing down my cheeks. I have NEVER even met someone else with CP. My GI guy in KY is the ONLY one who will see me in the state. I think he took me because no one else would. In 1978 I was the 29th child diagnosed with necrotizing hemorrhagic pancreatitis and the 5th to be diagnosed before autopsy. In other words, I woke up with it one day, no trauma to the organ, had severe peritonitis and gangrene. They opened me up (they thought I had appendicitis) cleaned me out, sewed me up and told my parents that I would not make it through the night. Yet here I sit at 36 with CP, DM, ludicrously high triglycerides which I can eat grass and they stay around 600-800 if I’m lucky. Now my liver enzymes are creepeing up because the triglycerides are clogging it up. I was just curious if anyone else out there has lived through this deadly type of pancreatitis or does anyone else battle high triglycerides?

I had a real rough year in 2006. ERCP w/duct surgery, EUS with a drained psuedocyst on the head and roughly 8-10 hopsitalizations. I had been good for 8 monthes and then had to go back to the ER this past Monday. Sometimes I feel like a piece of driftwood caught in the waves that keeps getting smashed in to the rocks. I have also had the doc/ER “your amylase and lipase are fine go home and get some rest” crap. I had a doctor tell me that my problem was the I had anxiety and that caused the pain…all to familiar to many.

Thanks to all who post…you are like angels that God has brought to me. The feelings of depression, isolation, disrespect that we go through can be almost as dibilatating. I am a RN who has fallen to my knees asking Gods forgiveness for EVER judging a patients pain that I have cared for.

Thank you to all again,
Angela

#2

Angela,

While I haven’t heard of your particular condition, I’ve had CP for almost two very rough years now-- and have been told repeatedly due to complications from Ehlers-Danlos and the emergent nature of some of what’s happened, that I “could have died,” and as of last week almost did, from what I’ve been told (I went into shock and don’t remember much).

I logged on and read your post-- and it brought tears to me, as well.

Just to let you know, all the CP-ers here have been beyond words in helping, offering support, and sending love.

Please feel free to ask any questions you have or to send me a message anytime-- Anything you need that I can help you with I’d be happy to do.

I wish you all the best and send you hugs,

Lisa

#3

Angela,

I am sorry you have been so sick. I am also glad you found a place where ypu can connect with others. I,too, felt very lonely with my CP dx, I didn’t know anyone else who had these problems to deal with. Having people to talk to is a great help!

Where in KY are you from?

I live just south of Louisville and I believe there is another member from Louisville.

Take care and God Bless
Cindy

#4

Cindy,

I actually live in Oldham county in Buckner. I was curious if you go to Dr. Jones in Louisville and how your experience has been? It is so wonderful to know that there are people close by who are going through the same thing. I had pretty good luck with my PCP out here and the little hospital BHNE. They got to know me well in 2006. Hope to hear from you soon and hoping you are pain free and eating.

Blessing to you,
Angela

#5

Lisa,

Too many questions to count…I think the hardest thing is that I feel like that when I do reach out for help to the doctors (especially ER’s) that its almost like I have to prove to them that I am really sick. One time last year my lipase was slightly elevated which you know is rare in CP and the ER doctor said “you have pancreatitis”. As bad as I felt and as bad as I knew my pancreas had to be to cause an elevation, it was a relief. Crazy huh? I read these stories and I think to myself, “you suck, it could be so much worse”. You and so many are such an inspiration that life doesn’t end with CP. There have been times that I have asked God why he let me live. The condition that caused my CP is so rare I have had to literally put my mother on the phone with an ER doc while I was in college because he said “No one lives through that, you must be mistaken”. The arrogance. Oh to have that much assurance in ones self to think you know everything…sorry, just a little bitter sometimes. Thank you so much for your reply. I am recovering from a flareup and this had truly taken my mind off of the pain and nausea.

Many blessing to you,
Angela

#6

Well, I did not get CP the way that you did. However, I do have necrotizing and calcifying CP and have had it for 12 years. I am now bedridden. Read my bio. You will find that I am straightforward in all matters.

I just did a lot of research on admission to the hospital for bowel (I call it “gut”) rest. Most publications, even the AGA (American Gastroenterological Association) say that we should be admitted and should not have to wait until we are so sick that we could almost de (figuratively) from the pain and suffering. I ma wirte it all up along with a good set of footnotes.’

You are so right about the “we gave you pain meds and a bag of salty water so you can go home now” routine. Even the AGA says that CP patients mostly do not have rised amylase and lipase levels. However, I do have very high triglycerides and cholesterol now as well as DM (diabetes mellitis) and I cant eat meat at all as it akes me so ill. So, I eat the high carbohydrate diet that most CP people are suggested to do.

Yes, ERs are a cesspool of doctors who know nothing about CP. It makes me sick to my stomach to know this. (Joke intended as well as seriousness).

Best to you,

Anyse

#7

Angela–

Thanks for your words and I only hope you can find a way to keep making it through and day feel better!

If you want some incredible validation for all those docs who don’t listen or believe us when we’re sick… read the pancreatic forum entitled, “It’s my doc who’s crazy.” It’s a very heavily read/responded to post-- and while that’s very scary and sad, it’s also very reassuring.

Let’s hope one day we can all get it to change!

Hugs,

Lisa

#8

Hi Angela,

I too go to Whitney Jones in Louisville!! I have been seeing him for twelve years. I love him to death, and wouldn’t change doctors for anything. Maybe we can all get together for a group or something. Feel free to give me a call 502-266-7732

Karen Speer

#9

I see Dr. Mark Bronner in Louisville. He is with Louisville Gastroenterology. I have been seeing him since 98. But I have heard many good things about Dr. Whitney Jones from other people, I have kept the name in the back of my mind, just in case!

May I ask who you all see for pain managment in the Louisville area?

My Dr. is not wanting to help much anymore, I may have to find another in the future. Thank you and I hope everyone has a good (pain-free) weekend!

Cindy

#10
I am not working for the summer would you please take my email off until I get back to school in Sept. 
Thanks


#11

Sorry it took so long to get back…life took over! My PCP treats me for pain. If your PCP is unwilling to work with you then I would most definitely find a pain mgmt doc. Some PCP’s don’t like to treat pain because it draws attention to them by the DEA. That is not a problem with pain mgmt.guys. There are tons in Louisville. If you do not need a referral from your PCP (insurance requires it sometimes) then you can call and make an appt. I am sure that they treat CP patients.

I was unaware that Dr. Bronner treated patients with CP. He is a great man, good doc and is very kind. Dr. Jones is the last doc in Lou that will take the real sick CP patients. He is the only GI in Lou that will see me. The other GI’s have said that they feel “over their head” with me. I had a type of pancreatitis when I was 7 that should have killed me and have no idea why I just woke up one day with it. I am young and have multiple health issues so they a think don’t know what to do with me so they sent me to Jones.

It was great hearing from you!
Angela

#12

I have only been a patient of Dr.Jones for a few years. No one else in Lou would see me. I contacted many GI groups and they all passed. I would love to meet sometime for coffee. Take a look at your calendar and email me if you think you would have time to meet. I live in Oldham county so we could meet in Lou. I am so glad to find someone close.

Hugs to you,
Angela

#13

Hi Angela,
I was really hoping to hear back from you. I guess I wasn’t totally honest about Jones. I do love him to death, and wouldn’t WANT to change doctors, but sometimes I feel like he tells me what I want to hear when I am in the office, and then doesn’t come through when the time comes. I hear all this about how he doesn’t want me to be in pain, and how he’s on my side. He suggested I start getting pain meds IV at home since I am having major pancreatitis about two weeks out of each month. Since I have Cystic Fibrosis, there is a big risk everytime I am admitted of me catching something else, which we don’t want to happen. So, he decided last week that he would order the pain meds IV through home health. Well, I have dealt with the pain since Sat. and now I can’t take it anymore. I called, and Maria called me back, and said they don’t do that!!! I told her of my conversation with Whitney, and she said he was aware of that, but wasn’t going through with it. What’s up with that?!?!?! So, he offered to order me IV fluids at home!! I told her to forget it I would deal with it, or not. I am so tired of hurting all the time. I hurt everyday, and then am blown out a couple of weeks a month. I am sick and tired, of being sick and tired!!
Now, I do get oral pain meds from Jones, but after twelve years they just don’t cut it when it gets really bad. What do I do now? Do you get this with him?? Denise, that answers the phone is a sweet heart, and I told her I was talking to a few other patients online, but didn’t tell her who. he said she probably knew, and we should get together and talk with the office manager if it is a real problem. I have to go back to CHou tomorrow, so I will think more about it after that. I do like Whitney very much, but I also think he has taken on too many patients now. So many of his patients are critacally ill, and to top it off Kichouse(sp?) is out of the country on vacation for two months, and Jones has all his patients! He is on call this coming weekend, and I am going to call and ask why he had the change of mind.
I know that I don’t know you, and you don’t know me, but it is nice to lay some of this on someone who can understand what living with pain is like. I joined the list a couple of months ago, and haven’t heard from much of anyone. I am on a CF support group, and they are great. I figure once I get to know some people it will get better on here too, at least I hope so. Like I said before, I live in the Louisville area, actually Jeffersontown. I don’t work right now, but am the Host Director for Angel Food Ministries, which is a program where we sell boxes of food valued at 50 - 65 dollars for $25!!! It is a great deal, and several people from your area order, and a church there is going to be selling soon. I believe it is LaGrange Presbyterian.
Well, I hope you are having a better day than I am. Feel free to write or call anytime.
Karen

#14

Karen,

I know how you feel! I have been sick and tired and in constant pain and nausea for over 12 years now. I hate how a doctor can jerk people around like that. I am supposed to have someone come in from Kaiser for Physical Therapy as well as a medical evaluation for home needs. Have they done it yet? I am sure that you cn guess. I was also approved for a MediPort. Have they given me a referral to the person who does it? Again, I am sure that you can guess this one too. The unresponsiveness of medical providers is terrible and I also get sick of it. Many times, I am to sick to even fight about it.

My thoughts are with you.

Anyse

#15

Anyse,

What do you do when you have a major flare-up? I would prefer to do the IV’s at home, but no one wants to write for them. They are afraid I’ll be out on the corner selling them or something! No way, I need whatever I can get. Don’t they get it???

Karen

#16

Angela,

Get ahold of me when you get out.
Hope you are feeling better.

Karen

#17

Karen,

Unfortunately, with acute chronic necrotizing pancreatitis, when I have severe pain, I cannot eat or even swallow water! So, I have to go to the ER and be admitted to the hospital for rehydration and pain management. It is ugly and no fun whatsoever.

Wish I could have given you a better answer.

Anyse

#18

Hi Again,

I am pretty much the same way, but they don’t like admitting me because of the CF. Therefore, most times I lie here and suffer like now!! Jones said he would order home IV pain meds, but when it came time he backed out. What now??? I’m tired of hurting.

Karen

#19

Hello Everyone, Just a quick note. I am on day 5 of a hospitalization and hoping to get sprung tomm.

 Durga: Thanks for your kindness and concern! I was so touched when my hubby told me you called. I am a little concerned about some labs & CT scan results. As soon I get home I am going to post my concerns in the forum. I can't seem to get on the forum to start a new topic.

Karen: It was so great talking to you on the phone and I really appreciated the phone call from you while here. I hope your pain issues with the docs resolve soon. warn out, starting to have some pain, so I'm going for now. Love and Blessings to you all.

WARNING: This is about to get sappy! I love the VISA commercials where it compares things of monetary value to things that are priceless. I believe that when I found all of you, I became the recipient of a pricelss gift. Because you all have given me such inspiration, strength and courage. I no longer care about whether or not the nurses think I am sick. I am only focused on me and getting myself well. Thank you all for your love and support for me and my family!!

Angela and family

#20

Hi Angela,

So sorry you are in the hospital so soon. I was really worried about you. I was thinking about you and haven’t seen your messages on the Care Place. It’s not fair, you were having such good time with your kids, even though the pain was bothering you. We all try to do that don’t we?

Just concentrate on getting better and get back to us. Don’t you worry about what the nurses think or anyone think, it really doesn’t matter. We know what we are going through. When I get that kind of treatment I think I wish they can come and spend at least couple of hrs at my home and see how I struggle. It’s not in our hands.

You are a sweet person and have so much love for everyone. Hope you come home soon. I can’t even get to the forum. When I didn’t get any response from you I wanted to ask people whether they know anything about you. But I couldn’t get on to Forum. They have changed everything.

Waiting for your return.

Lots of Love,
Durga.