Life after removal of pancreas, gall bladder, spleen? Anyone out there please?

Hi Erin, I may have a similar situation in that I have a 16 mm lesion in the tail that has been growing slightly. The FNA biopsy was benign but it is not reliable. I was having bouts of pancreatitis until they did an ablation of the pancreatic sphincter. I'm wondering if you could give feedback on some items like how old you were? Is it a large scar (I'm considering laproscopic)? Was your surgeon at a large specialty hospital? Sometimes now they can save the spleen, has the loss of spleen been a problem? Anything else you'd care to share?

yes I had it done. Was a year ago (May 3, 2011). I'm doing good. Had it done a Lee Moffitt Hospital in Tampa, Fla. Its been great. I've up and going on with my life. I am disable from a lung desease. I work at the church about 15 to 20 hrs a week. Also oreder for the food pantry there. The Lord has been good.

Hi my name is Caitlin and I have Hereditary Pancreatitis and have been sick since the age of 3. I am now 22 years old and had my entire pancreas removed along with my gallbladder in July of '11. My quality of life sucks right now because I also have gastroparesis which causes me to not be able to eat a lot of food because my stomach moves too slow and it becomes extremely distended and I end up vomiting most of what I eat. I have been a type 1 diabetic since I was 15 so that wasn't new for me although my diabetes has gotten a lot harder to control. It is very hard keeping /trying to put weight on and I have a lot of vitamin difficiancies because I don't have a pancreas. I am currently on the transplant list for a new pancreas and have been waiting for 9 months now but have been told that most people wait for at least 2-3 years before getting a matching donor. I really hope that everything goes well and that you have a good and happy life and don't let it beat you! You can live your life even without a pancreas it is all about managing and willpower-the mind is a very important thing to believe in. Mind over matter! I hope this helps you even though I said my life sucks.

Hi, I was 22 when I had it done. My scar is HUGE! From like the bottom of my bra to below my belly button. If they can do laparoscopically effectively, go with that. The only problem I have from my spleen removal is when I get a cold, it knocks me on my butt. I feel like I pick up "bugs" more easily as well. Not a big deal considering I almost died :-)
Knock on wood, I have no side effects from this surgery. I was eating a cheeseburger and fries the day after I was released. Mine was done in Gernany bc I lived there at the time..I was only the 2nd person to have the surgery there. The US will be infinitely better. Best of luck to you! It's scary, but I had a happy ending and I'm sure you will too!

Hi, Laura.

You are the first person I found that very similar to my case. I had my spleen and half pancreas removed Mar. 2012. 7 months ago. It was not cancer. It was a cyst like golf ball size. I am in Canada. Dr. didn't tell me to see a physiotherapist, so my stomach go weak. I get strange pains. It is hard to explain so I don't. I just asume this is normal. I sometimes wonder if this surgery was necessary or not. I was very healthy person before. Now I am trying to get back to my normal life. I was dismissed by the clinic because I didn't have cancer. I felt so left alone. I am gratful that I didn't have cancer but still suffer from the surgery. You are right. When I eat too much pasta or rice I get pain. I will stay away from them. I love both... I don't have fear about my future. I just want to know how to deal with my body now. You have to take care of yourself now.

Steve, this forum confuses me. Did I respond to you?

My namw is lisa I havd my gb, spleen and 1/2 pancracs removed it has been hell i stay sick and sleep all the time

 

i know i have only just read this as i am researching the pancreas ,i can only feel so upset for you and hope in the 4 years since this email you have recovered and lead a good life your story has given me a lot of information to use ,i live in england and am a medical technician but they dont always give all information you require and books certainly dont ,thank you for your information on here it is so helpful best wishes to you d howe

Hi - With me, they caught the pancreatic cancer just as it was turning nasty. Surgically removed my pancreas, spleen, 14 lymph nodes, duodenum and, due to surgical issues, a lot of my stomach and intestines. As result, I have gastroparesis, wherein I get a lot of nausea, I've lost half my body weight and can't gain an ounce back (and that ain't all bad!), and also suffer from a lot of pain. That's the reason for writing: I am seeing a pain specialist. About every 3 months, I get a steroid shot in my back that reduces the pain by a lot. That doctor also convinced me to see an accupuncturist...I went from being the world's biggest skeptic to being the world's biggest believer. They help a LOT with pain management. Biggest complaint - other than the nausea - is that I have nearly zero strength or energy. It's about all I can do to lift a grocery bag out of the trunk and carry it in the house. But...all in all...it's a better life than the alternative!

Hang in there. Life does come back. It's just different. That's all.

Hi,my bro met wid an acidnt,and got his spleen 1 kidney o tail f pancreas damagd.plz cntct...want 2 knw ur experince so dat i cn make my brothr life betr nd lnging,.

Hi all. My father (51 years old) had his entire pancreas, spleen, and gallbladder removed. Also a reconstruction of the bowels. We live in the UK and he had it removed at Kings College London. He had chronic pancreatitis for several years. The operation was in May 2012. Since the operation things have been going downhill. He has been in hospital many times after this and his sugar is not in control. He is severely underweight. He was 58 kg before his operation but has drastically gone down to 32 kg recently. He recently had an episode of ketonacidosis and ended up in ICU. He is back home now but he always has stomach pains when he eats and as soon as he eats even a little bit he needs to go straight to the toilet. He also hates taking his enzyme tablets every time he eats as he finds it hard to swallow. He has also has stage renal failure for several year (before pancreatitis) so he has dialysis 3 times a week. Has anyone had anything like this? It is so stressful and upsetting to see him like this.

It seems like you have gone through a lot. Which country are you in? How much weight have you loss? My father has gone from 58 kilos to 32 kilos. He physically has no strength and can barely walk.

Greetings - I have great sympathy for you and empathy for your father. I am in the United States. I had the same surgery in November, 2009. I too had much of my intestines removed, as well as a big part of my stomach. My weight dropped from preopration weight of 302 pounds to 151. I too, struggle with taking the enzymes with each meal, as it causes severe nausea. I was tested for this and learned that as a result of the surgery, I developed "gastroparesis". This causes frequent issues of nausea after eating. A medication I found helps immensely is one called Merinol. I take 2 with each meal and the bouts of nausea are much less intense and much less frequent.

As to controlling the sugar, about a year ago, they put me on an insulin pump. I also have a continuous glucose monitor which has been a great help in controlling my sugar levels as well.

If I recall correctly, this system will not allow us to post email addressses. I will try to post it in a way the computer won't reject it. If it works and if you have any questions, please feel free to email me directly. My email address, and note the coding, is rich - at - rpwheeler - dot - com. Good luck and best wishes to you and your dad.

Thanks for your reply. We don't really know of anyone with the same problem as my father so its nice to know there are people out there. I have seen a lot of people write about their insulin pump, it might be worth us finding out about it. Do you know of any medication for severe diarrhoea as this is his biggest problem which is preventing him from wanting to eat anything? Doctors have prescribed him with a drug called Loperamide which is basically Immodium and is not really helping. Thanks for the email address.

Hi Erin, I just saw this response. Thanks... I had my surgery in August 2012. They planned a laparoscopic surgery but had to convert to a full open because they couldn't get the spleenic artery detached from the pancreas tail. So I ended up losing my spleen and have a big scar. They did find a pre-cancerous lesion, called IPMN (intraductal pancreatic mucinous neoplasm) that was graded as 1b. I've healed well and feel good. My blood glucose has gone from about 105 to 110. I can eat normally but have trouble with large meals. Of course I don't drink alcohol and need to watch my sugar intake. The doctors say I dodged a cancer bullet, but I have mild chronic pancreatitis from years of bouts of acute pancreatitis due to the lesion. My main worry now is that lesions can develop in the pancreas again. These lesions are comparable to polyps in the colon, which tend to recur once you've had them once. Studies show the odds of recurrance at 10 to 30%.