Facing a complete pancreatectomy

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katethekid

Guest
I have had pancreatic issues since I was 15 years old, I am now 26. I've had 6 pancreatic stint procedures, a whipple, a puestow, and a partial pancreatectomy to help correct a birth defect sometimes seen in cf patients known as pancreas divisum. Pancreatitis is nothing new to me and I can usually manage it at home, but for the last 3 weeks I've been in and out of the hospital because the pain and nausea are too severe to bear and handle at home. I have been told by the lead GI specialist here in Chattanooga that my only option is to have a complete pancreatectomy. I know many of you have dealt with pancreatitis and was wondering if anyone had any advice. I hope Printer reads this as I know he has been through a great deal with his pancreas as well. The only other option suggested is a J tube, but that wouldn't be a permanent fix. I'm afraid of the surgery, which isn't normal for me, medical procedures and such usually don't frighten me. I know I will be on an insulin pump afterward if I do the surgery, I'm not sure if anyone here can give me insight or advice on that as well. Sorry for such a long post and all responses are greatly appreciated.

Thanks,
Caitlin
A scared CFer
 
A

Aboveallislove

Super Moderator
Caitlin,
I hope Printer's still on today, but just a couple days ago he posted the name of the doctor (I think out of Boston) who is an expert here. See if you can find that (search Boston or Printer) for it. I'm going to channel Printer and say call today and make an appointment with him before you do any procedures. I'd even see if he'll do a phone consult if he can't get you in physically in the meantime.
 
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katethekid

Guest
Thank you, I will definitely look him up. Eight out of my nine procedures were done at MUSC in Charleston South Carolina by Dr. David Adams and Dr. Peter Cotton. I want to make sure I know what I'm getting into before I decide on the procedure. Thank you again for your quick response.
I will try to respond to everyone as quickly as possible. The wifi here in the hospital is shotty an I'm using my phone :)
 
P

Printer

Active member
Catlin:

I appreciate your confidence in me.

First I want you to google Steven D. Freedman , MD, PhD. He is a CF, GI Specialist. I can tell you that he is the best CF, GI Doctor in the country. He is a regular presenter at the Annual CFF Conference. Your Doctors at your CF Clinic will certainly know him.

PM me and I will give you my email addy.

Bill
 
C

CFcyster2012

Guest
I used to post here a lot but have no been on in years. My two cents- I have an insulin pump and love it. I've been diabetic for 6 years now. Its certainly something you can manage. I guess what I'm trying to say is not to let that be the factor that holds you back from getting the surgery.
 
K

katethekid

Guest
Thank you Printer! I will send you a message as soon as I can. Not sure if I can figure it out from my phone but I'm going home today on strong oral pain meds and phenergan. I'll look up the doctor you mentioned and ask about him at my CF center as well.
CFcyster, thank you for your input. I am nervous about the pump so hearing from you about that is very helpful :)
 
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AUG19DW

New member
Hi. My son started with pancreatitis at 12 and we found out he had CF at 15 when he started getting pretty bad. The GI here removed his gallbladder to see if it would help and it got worse and worse to the point he was pain 24/7 for 2 years. We went to numerous GI's and they all gave up on him after trying stents in his pancreatitic duct and celiac plexus blocks which in a child doesnt work that well. I was told he would not be a good candidate for the Total Pancreatectomy/Islet Cell Transplant by the last GI at Duke University Hospital. I pursued it myself and contacted Dr. David Sutherland at the Univ. Of Minnesota that devoleped this surgery back in the late 70's. We flew from VA. to MN. in 01/08 and also had all my sons med. records Fedex'd so the surgeon could go over them. He looked over everything and his main concern was how long my son had been on Narcotics and the pain he was still in and he could not function and had to quit school cause of the pain and narcotics put him down. He had the TP/IAT 02/21/08 and because he was on narcotics for so long it took a year to wean him off. As far as the insulin you will not be on a insulin pump if you are not allready diabetic. They take your healty islet cells and inject them into the main portal going to the liver and they eventually start producing insulin in the liver. My son was on Lantus and Novolog after the surgery before the surgery he was never diabetic. And he was in the hospital for 1 month after the surgery and before we left he was only using the once a day insulin and about 4 months later no insulin at all. He still to this day does not use insulin. Of course he sees an endo. dr. to check all this a few times a yr. and has a routine yearly A1-C check to make sure his cells are functioning properly. He has done excellent with his sugar. Now if you are allready diabetic they cannot use your own islet cells then it would just be a Total Pancreatectomy only and yes you would be on insulin and even a pump at some point. But it is still far mbetter to live like that than in constant pain from Pancreatitis anyday. My son now 21 almost 22 has his life back. Now I wont say without complications. There is always risks you take. But the best time to get this surgery is before you become diabetic. So like I say dont wait too long. Now Dr. Sutherland just retired last year or this year but Dr. Freeman took over and is doing a wonderful job. Also if you contact them they can refer you to some of the surgeons around the country that have studied under Dr. Sutherland that may be near where you live. I know of one in Va. at UVA that is doing it also now there. If you would like to contact me my email is aug19dw@aol.com.
 
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