First off I want to say “Thank You Aunt Pat” for the thinking of you card! 
I wanted to forward this on, It touch me a lot and I am sure it will you as well…
Have a great day Barb
I would also love to have a copy of the letter. Maybe it would help my family understand better.
Thanks,
MKgirl
MK, If you add me to your firends list and send me your email address I will send the Mayo article to you if that is what you want.
Vonnie
Barb,
I am doing ok. I just come off a 2 week liquid diet of Ensure and homemade juice. I don’t know how long a person can exist like that. I started eating last night because I was getting weak, lightheaded, vision was a little off.
I’m sorry that you have been having problems. This is the time of year when my pancreas starts flaring. It builds up during the summer and then I break down and go to the doctor. Only this time they are going to do a Puestow. They can’t put in any more stents. My strictures are too tight.
Other than that all is well.
Keep the Faith and Go Bless,
Vonnie
Well Hi Vonnie again, lol just sent you a email back lol…What is a Puestow procedure? not sure what that intales…Ok good night sweetie…With all my love, Barb
A Puestow is when they filet the pancreas and attach the duct to the stomach or intestine, depending if the pancreas is closer to one or the other.
Vonnie
Thank You Vonnie!
It sounds really painful! I am sending you lots of prayers and thoughts!
With Love, Barb
oh M.K you have a plate full right now, and stress is the last thing we need in our lives, it does encourage flares and bad ones as i have experienced, please take “me” time and do something for you that makes you happy and feel good, i will be praying for you and thinking of you.
julie
My daughter had the Puestow in 06-it helped tremendously with the duct not getting clogged again and has kept her out of the hospital almost 3 yrs. BUT the pain never left-it got much better and bearable. But never a pain free day—and now it is returning again and uping the meds. Her pancreas is atrophied and badly scarred YET it keeps on working. We are happy for that-no insulin issues at this point. But everyday seems to change.
Terri
Terri, Thanks for that information. I really don’t have a lot of pain, not like some do, not every day. I do have periods when it is painful for several days. I find doing the liquid diet helps a lot. I know that the possibility of the pain going away is not the best. But I am trying desperately to hang on to my pancreas. My biggest concern is the duct completely closing off. If that happens then I understand that it would be too late to do the Puestow. Lots to pray about. And the timing is essential. The more information I have the better prepared I will be.
Thanks,
Vonnie
Hi Vonnie,
I hadn’t heard that even if the duct is closed they can’t open it-I have the surgeon’s report on my daughters surgery and it was clogged when they operated-and as I said they just slice it open anyway and all they juices are suctioned out and they then attach the duct to the lower intestine and that is where all the pancreatic juices go to from then on. But I do feel if you can avoid a surgery then please do. The more the pancreas is touched the worse it ends up-they never tell you that when you have ERCP’s and any surgery. I think that is one of my daughter’s problems-though no one could have prevented it. So many attacks that damaged the pancreas and so many procedures that we’ve been told she may never be pain free–and thats not what a 20 yr old needs or wants to hear.
Good luck and will be praying for you.
Terri
I guess I need to do some more questioning. I am so sorry for your daughter. It has got to be tough for her. And as a mother to have to watch that must be very difficult for you. We counted and I have had 10 - 12 ERCP’s. I have also read that for some people the more damaged the pancreas is the less pain you have. However I don’t think that is true for anyone that has communicated on this forum. Anyway, a lot of information out there, but I still think that everyone is different in how the disease affects them. I will be praying for your daughter.
Vonnie
Hi Vonnie,
We just got back from seeing her specialist and he is suggesting another surgery for her–mostly because he feels her quality of life isn’t so great.
He said the pancreas rarely if ever burns out and the more damage you have depends greatly on each individual. Her pancreas is totally scarred and is atrophied yet the pain is continuing and increasing. He is sending me the name of a surgeon that specializes in pancreatic operations at Hopkins and then we will have a consult. It really is up to my daughter -she lives and breathes this so I will respect whatever she wants to do. She does not want the complete removal but is willing to try a partial-but we will see.
Her specialist has known her since she was 12 so we feel very confident with him. You have to make the decision that is right for you and how much you can take-I think my daughter is at a point where she is so tired of having no life and constant pain and always hoping the next pain pill will work a miracle. Thank you for your kind thoughts and prayers and the same to you. Keep in touch
Terri
Teri, I will keep your daughter in my prayers. Thanks for the good information. Vonnie
I am very concerned about the issues we are all having. Seems the Doctors don’t really know what to do from what I am gathering. I am going to have a stent done by apparently a Dr. who is the best in the Nation for the pancreas procedure and I don’t even think its going to work. I had a Eus done a couple of months ago and the doctor who did it said he didn’t know what the Doctor in Indianna would be able to do because my ducts are so small and my ducts don’t go all the way through. But I have been told I have to try because I am worth it apparently. I have continued to lose weight I am now a 00 zero at 5’5" and I am tired all the time not to mention the pain I am having. I am not confident this is going to work and neither are the doctors. Wow , what am I supposed to do? I was also told that they haven’t had a great success rate with the Puestow procedure. Mmm, so where does that leave me? I am very frustrated with the situation and I am sick of losing weight I feel like people are looking at me like I am a freak. I continue to get comments about my weight loss and I am very self conscious about it now. When you get comments from people like “eat please eat” it really starts to mess with your head. I am eating but I just keep losing and I don’t even understand why. Can anyone help me explain why this is causing me to lose weight?
I am also going through a messy divorice right now. So, my son who is 20 will be going with me to Indianna. I have been told to expect to be there at least 2 weeks because the doctors believe I will get pancreatitis. I was also told that the stent has to be removed after three weeks so I guess that means I will be at the university of Indianna for about a month. Does anyone know if the hospitals help with housing for family members? The amount of money it will cost for a hotel is way out of the realm that I can afford. My procedure is August 7th please let me know as soon as possible if you have any ideas for me I would greatly appreciate any advise.
Sincerely,
MKgirl
MK,
I was in the hospital for a total of 3 weeks in 2001. I shared a room with several different people. I didn’t make friends with any of them because they didn’t stay long. However because I was there for a while the second go round I got the window bed. It looked out over the mountains, Pikes Peak and the front range. I live in bedroom community, next door to Colorado Springs. My husband worked and my daughter and son were busy with their own families. They came to visit and my husband tried to be there when the doctor came through.
The staff at the hospital were great. But I don’t tend to take too much care. I am pretty independent and try to take care of myself as much as possible. Although there were times when that independence tends to leave me begging for attention when I really need it. One night I needed a nurse, rang my bell. When they stuck their head in the door and asked if anyone called I said I did and they didn’t hear me over the gal in the bed next to me who said no. I didn’t speak up loud enough! Usually not a problem for me!!!
If I end up having the Puestow it will be at University hospital in Denver.
My brother wants me to go to Mayo. He even threatened to come get me throw me in the car and take me there himself. He hasn’t done that yet. I’m glad.
ERCP’s are tricky. Sometimes they cause a lot of pain and sometimes they don’t. The doc’s I have in Denver are very good at it. I had 10-11 ERCP’s with them and had very little pain. I only took pain pills a few times. I have a very high pain tolerance level. That might have something to do with it.
Let me know how your situation turns out. I will be interested to know if the hospital or church are able to help you find a place to stay.
I will find out after the first when they will schedule the cat scan to see if my duct is dilated enough to do the surgery. They were talking about sometime after labor day for surgery.
Keep the Faith and God Bless
Vonnie
I live in kansas, and dr. osborne from Wichita said Indiana is one of the very best for pancreatitis !
He said someone by the name of layman or “lehrman” is the best! Anxious to hear back on your experience! Godspeed.
Hi Jewels,
Yes, the doctor in Indianna’s name is lehman. Not sure if that’s how its spelled. He is the one your doctor is talking about. I am trying to be hopeful that he can help me. I’ll let you know what happens.
As you know stress does make this disease worst. I am trying to get enjoyment where I can. Life is too short not to enjoy it to our fullest. We never know how long we have. Thank you for the kind words. So that goes for you to Jewels from what I have read you have been through the ringer yourself.
I read that you are trying to get disability. I have an appt. with disability myself August 13th I was told that medically I qualify. let me know what happens with your disbability. I’ll be praying for you Jewels.
God Bless,
MKgirl
Hi @runner21
Glad to hear from you and i will be checking my personal emails soon and be getting back with you, but regarding the scar tissue mine was a lot in the lining and some at the head of the pancreas that is left, no dr.
porter did not scrape the area of the pancreas, got only as much as he could with not touching the head,
I agree with your Doctor as Dr. Porter said it would be a bigger mess if he were to get too close to the remaining pancreas. I totally understand your frustration and yes you will be given MANY different answers to this entire illness !
I know that is not very reassuring, just facts as ALL my drs. have said one thing “we know the function of the pancreas but it is still a very mysterious unknown organ” guess i could not have put it any better ! hey, hang in there and i will be reading your email and getting back today with you all my love and prayers to you, your family and daughter!
MK,
Sorry to hear you are having so much trouble. Am praying that the Lord will help you through.
Vonnie