I would suggest to you to read up on what a pancreas does. After removal of a pancreas, you will need to be on digestive enzymes for the rest of your life. You cant digest without them. It is trial and error to get the correct dosing. Also did they transplant your islets too? Since you become diabetic without a pancreas, but if you had the transplant of the islets and it works, you can be free of insulin injections.
I am so sorry what you are going through......my doctors are holding me off as long as they can before my pancreas gets removed, but I have been reading up on it and see why...the operations havent been all that successful...sad to say. Again we have to inform ourselves and make sure we have an advocate that will assist in asking questions and help do research.....because this is a very serious operation and shouldnt be looked at it lightly. My heart goes out to you and I hope you have a good support system.
Hugs
Diane

I must admit I had not heard of this. I guess when they say you have this condition for life that's exactly what they mean. I am so sorry you are still suffering from the very symptoms you would have thought would have gone away with the pancreas removal. I understand about the islet relocation and taking the enzymes, but to still experience the pain and all the other bad things that go alonng with this is just too much. I pray you will find some relief and soon, and for that doctor to not even discuss this with you is criminal, I do hope you've since found a GOOD doctor to help you with this whole mess. Thank you for sharing what has to be a daily reminder of just how cruel this condition is and we all appreciate your warning. Be well and pain free............

Whoa! That just plain sucks! My heart goes out to you. I fortunately still have all of my pancreas but that hasn't happened without me fighting to keep it. I have heard other horrors stories from similar surgeries. Seems many want to take it out because that is what they do. I had a similar situation with a second ERCP that only made my pancreatitis worse and the only thing I was told was that I would feel much better the next day. Wrong! I can only imagine the frustration and dare I say anger you must experience. Be nice to yourself and don't beat yourself up. I don't know about you but I'm real good at that and it never seems to help. Duh! One day I'm hoping to learn the lesson for good. :o) Thanks for your post. I am even more resolved to insist they keep those scalpels sheathed. I hope you are able to find some effective pain and nausea/vomiting relief.

I did have an islet cell transplant that did not take. I am now a very brittle diabetic... of course I know what a pancreas does!! And yes I am on enzymes.

Im SO sorry you didnt get informed consent and continue to suffer! That seems to be more the norm than the exception these days especially with surgical specialties. I can relate all too well to your feelings of betrayal and anger. Mine were just different organs. My gyn of 20 years removed my organs for a large benign ovarian cyst. After getting all my records and doing some investigation, I discovered that there were a couple things at play: 1) my organs were removed to train gynecology residents, and 2) scare tactics and unnecessary organ removal seem to be his modus operandi (and that of many gyns).

My situation was different in that I didnt have debilitating pain but, like you, Im now left with a cascade of health problems (including idiopathic fat malabsorption). My anger drove me to file complaints with my states medical board and insurance company. Although I dont think there was any discipline, I hope its been a deterrent for this doctor. If insurance companies get enough complaints about these types of things, maybe they wont be so quick to authorize.

I hope things start improving for you!

Staceu1209 - Are you on Facebook? There is a support group on there that is JUST post-TP-AIT people. They are a HUGE resource to each other, I would imagine you'd get a great deal of information/knowledge from them (and could share what has/hasn't worked for you. I HAVE, indeed, heard of that happening (ability to have a pancreatitis episode AFTER it's been removed (I really need to look it up...it doesn't make any logical sense to me). Best of luck to you!

I am so sorry that you are feeling this way, it has only been 5 months since I had my islet cell transplant, I am doing well at this point, I cant say how I will be in a year or two but I hope that at least as well as I am now, I no longer have pain, of course I am on creon which you know that will be for the rest of my life. Just yesterday I saw my doctor and I asked about pancreatitis symptoms after having had pancreas removed and he said, "if there is no pancreas there can be no pancreatitis, but it could be something else or trauma to another organ that could cause similiar symptoms such as inflammation or a pseudo cyst". I am concerned because I did have the surgery and numerous ercps. Well I hope you will soon be pain free, my prayers to you and all.

In a month I will be part of a support group meeting for patients who have had the TP/AIT and I am hoping to meet with other patients and share notes and I will definetly bring this up again, I will keep you posted.