is there anyone living without a pancreas?

best Im so glad that you were able to have the islet cell transplant with Dr. Gruessner. His team was wonderful to me. I had gone un-diagnosed with abdominal pain for two years prior to meeting his team of doctors, and even though I did not have access to the funds to do the transplant portion, they still insisted there was hope as my islets are still worth trying to save. My pain doc sent me back demanding them to just remove pancreas, as he thought that would be better than me living with the pain. He also admitted he didnt know what CP was. When I spoke to Rene she said best advice I have to you is to find a new pain doctor. He was eductated by the the whole pancreatic team but still leaves thier patients without adequate relief. I think he thinks its like what having a muscle spasm feels like,, not organ failure that is gnawing constant pain, the worst, but she said he isnt helping thier patients, unfortunately. As for Dr G, you were in good hands, its so sad that political issues put his job on hold, but Im glad that he's fighting for the right to see his patients who will need follow up care forever. News articles all over the world are reporting and the general consenses is that he will will his case against the Dean, who was just offended by something Gruessner had said, and for standing up to confront hospital issues that were not being addressed. I guess UMC is willing to lose the innovation expertise that these transplant doctors brought to Tucson without care for patients. They reported to news that patients were provided with follow up doctors, but this did not happend in my case, or to anyone that I know that has gone there patients are generally confused a bout the Deans's decision, which is affecting. It is my understanding the doctor was not allow onto hospital grounds without security escort. What I can say about this doctor is that he treated me as he would any other patient, regardless of economical status, and still did what work up he could including giving me a confirmation diagnosis, continually monitored my blood glucose levels, and since I was without pain control for about a year..they tried thier best to help find a doctor that would do more than just injections, so since they have some compassion, they did write me an occasional script. I hate to see this center closed down due to politics, since this has happened it is not the safest place to to for pancreatic workup when pain is too severe and inflammation, enzymes or worse must be ruled out. I was given one Iv bag 2mg morphine, istead of usual 4mg dose, which did nothing to help pain, and no workup was done to see what was going on with pancreas, it was just an adominal workup, whereas told to drink lidocance, which bloated me, and didnt help at all. Finally, I was tol go try medical marijuana. I wonder what mpain doctor would say about that advice given from a nurse? This is the second time they have went in looking for cysts ect when I have went there for acute attacts, all the protocols have changed since the doctors are not there to guide them any longer, Its sad, but I was told none of Dr G's patients go there anymore, now I understand why. They needed him, and we need him, so what I wonder is what are they planning to do with all his paitents instead of lying to the news telling them they have been refferred to new doctors. There are no new doctors in the state of aZ that can do what they can do. It's obvious the Dean of his hospital has a history of disgruntled workers, who tell me how "he has created an atmosphere of fear and uncertainty cut back insurance benefits, and has a history of causing qualified doctors to leave to other states. Problem is we need them here, and this crisis not only affects the pancreas transplant program, but other transplants are on hold too. Not even California will see me without having a significant portion of transplant funds upfront. At least with Dr G I was treated human regardless of my income status. Now i just learned I never needed the chemotherapy that caused CP, and have been diagnosed with other serious issues, with another refferal to pain management, which just caused me more stress as i am already being told I can help you out for a month ro two, so I am afraid to complain that the pain is unbearable on current treatment, so I dont think he will care even thought its serious and only compounds my current issues of the under-treated pain i already face. I think he will just find a way to dismiss me as a patient, especially will all suppots are gone. I pray they reinstatethe doctor Hoplessljg

My friend, Michael Croudy first born mentally disabled, back in the 60's & before hand, it was called mental retardation. He wasn't really reared correctly either. Mike found out he had type1. @ age 15, signing up for wrestlin. Juvenile Diabetes. Between not b'n reared correctly, type1, drugs, ESP crack, many diabetic drops leading into many comas & numerous major accidents, it's no wonder he's still alive. I got him off crack, 5 yrs now. His parents don't care.

My bad, Mike was born w/o a pancreas. They found out at age 15, a physical for wrestling.

How are you now? I had TPAIT one year ago. I found the dosing of my Creon caused issues/pain. (Upper mid).

Wow-- our stories are frighteningly similar- at 26, mom of two, severe pancreatitis. I had the whipple done. I was told I could have more kids-- did and had such severe pancreatitis I needed to gave my pancreas removed. Thyroid is now al over the place. We are watching it closely. How are you know? I am very thankful I am well enough to be a mom to my daughters.

Hi,  

My sister is 74 & had the whipple for Pancreatic cancer 5 years ago. It came back & she had the whole pancreas & spleen removed 3 months ago. She is doing Great, she's now dealing with what's called brittle diabetes. Her sugars can go from Very Low to Extreme Highs (like well over 600). She has chemo every week & it is giving her some nausea sometimes. She has to take VERY Expensive enzymes whenever she eats. Her Dr. trys to help her out with samples when she can but it's still a balancing act. the chemo has steroids with it & that is part of the blood sugar problem. She'll be finished in another month & then hopefully it will stablize more. It's been difficult finding information about it because so few people have it.

She has more Good Days than bad ones. I think a Lot of it is her Attitude. She says she can feel bad anywhere so why not get up & do stuff & get distracted when she's not having her best days. She was at a Willie Nelson concert 2 weeks ago & is plenty active most of the time. But when she gets tired  Which is almost every day, she stops whatever she's doing & goes home & lays down for a couple of hours & when she wakes up she feels Great again.

She had business cards made up that give her name & say" Believer in Miracles" & under that it says "Attitude Adjustment Expert". On the back it says " It's Not what you are, that holds you back, It's what you think you are Not. If your why is Strong enough, Facts don't matter".

She has a Very Strong Why. She wants to Live to see her Dreams Come True & be able to help others see that it dosen't matter where you are in life, if you're still breathing, there's still time to do more & love more & help more ... Peace and Love ... Jill M. 

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I had my pancreas, gall bladder, spleen , partial doudenham and partial stomach removed about 3 years ago. an average day for me would include digestive pain with nausia,bowel difficulties, low energy ,mood swings. saying that, acceptance and apositive thinking is the key to coping. i try to stay out of stressful situations, take power naps and pace myself. not much, but i hope it helps

 

 

I had two thirds of my pancreas removed in 2000 and the last third removed six years later.Life has been VERY rough since 2006.I live a life of constant pancreatic nerve pain partially controlled with strong narcotics. Uncontrolled diabetes,constant diarea and lots of very expensive pancreatic enzymes.

I had my pancreas and spleen removed in September of 2013. I'm doing great. I'm also a diabetic type 1, like your husband. I'm not insulin dependent. Lucky for me. They have advised me that could change. How's your husband doing, as of today. I have an Awesome doctor, based out MUSC in Charleston, SC.

Hi. My name is Christina and I had my whole pancreas removed 14 years ago because of pancreas tumors. my mother and aunt also had their pancreas removed. My family has a rare genetic condition that causes pancreas tumors, parathyroid tumors, and pituitary tumors. I live in constant pain from the scar tissue. I have chronic constipation and high and low blood sugars. In two weeks I have been found unconscious from lows in the 20's. Having no pancreas makes it more difficult to control. My mother and aunt are deceased. It is very hard feeling like no one understands your condition.

Hello. Ill be having 3/4 of my pamcreas and all of my spleen removed soon. My gallblader has already been removed. Ill be having my sugery soon and would love to keep in touch with you. I have a rare genenic disorder that I just found out about. Im now recovering from my 3rd parathyroid surgery. I too am wondering about the effects of loosing my pancreas and spleen. I will be needing immunizations and most likely become insulin dependent.

My pancreas died of its own accord 4 years ago. You can live... but as you have experienced, the quality of life suffers greatly. I alleviate my stomach issues with immodium. I test my sugar 10-12 times a day- because I have to. I also do not have a stomach (gastirc bypass over a decade ago) so my digestion is totally up to my liver. I had my gall bladder removed 24 years ago. I wish I could tell you that there is a support group out there... but I haven't found one, He isn't alone. There are a few of us out there. It fightens me to hear, though, that people are PURPOSELY having their pancreas' removed. I know the pain of chronic and ACUTE pancreatic attacks, but my life has been so much worse since my pancrease completely atrophied. Close blood sugar monitoring, insulin and enzyme therapy and possibly pain management (which I have done and DO NOT recommend) where what Stanford told me would be the rest of my life. And so far they are right... although I find that the enzyme therapy does little for me. I have to have iron transfusions and take a lot of vitamin supplements and I PRAY... which has been the most effective tool in my arsenal. I was told that doctors really couldn't do anything for me... so I am relying on God. Hope things are getting better.

hello...I am living without a pancreas, spleen, gall bladder and a foot of my small intestine an inch of my stomach....my surgeon put me on CREON (PIG PANCREAS PILLS) I have to take for the rest of my life before every meal....it has helped me tremendously....you will have to moderate your eating habits and now you are a permanent type 2 diabetic....so eating healthy and exercising is very important.....I do get frustrated at times...but considering the alternative of being dead....I will deal with the frustrations of not eating unhealthy food products and giving myself injections (insulin) 3 to 4 times a day

Due to cancer, I had my pancreas totally removed and suffered the diarrhea you describe. The surgeon prescribed Creon (an enzyme) which solved my diarrhea and the consequential weight loss. I weighed only 53kg after surgery and a lengthy recovery but am now a steady 87kg. I inject insulin 4-5 times daily, eat well and enjoy pretty good health. My life expectancy was not great at the time of surgery, but I can happily report the surgery occurred over 7 years ago and I still walk the golf course on a weekly basis. Good luck.

I have been living without a pancreas since it was removed in 1998. I had a total pancreatectomy/islet cell transplant. All of my problems started in 1985 after I had my gall bladder removed. In 1989 I started having issues again. I had a blocked bile duct. They sent me to IU Med Center in Indianapolis, Indiana. When they did my ERCP I ended up with pancreatitis. Of course that turned into chronic pancreatitis. I had several complications after surgery. I weighed 70 pounds & died 5 times. I've had 15 major abdominal surgeries & too many minor to count. I have been pretty much bed ridden for 26 years. The pain is worse than labor. I don't drink, smoke etc. & have lived a good clean life. If not for my love for my family & my faith, I would have given up decades ago! I am blessed also to have the best GI doctor, Dr. Glen Lehman & best surgeon, Dr. Thomas Howard. They have been with me throughout this all. My husband has been AMAZING, as well as my children. They were 3,4 & 5 years old when I became so ill. I was told I wouldn't live to see them graduate from high school. Not only did I o I've to see that, they all have college degrees, are married & I've been blessed with 4 grandchildren with one due in June. I feel blessed. It's hard because they all live far away & it's very difficult for me to travel. I ended up in the ICU the last 2 times I did with acute me to acidosis & renal failure. My blood sugars are still all over the place & have been over 1,000 & as low as 5 at home. With no pancreas & all the vomiting, etc. It's hard to regulate them. I am SO SORRY that you & your husband have to deal with this as well. You are in my prayers. Sincerely, Vicki Peterson