Type 1 Diabetes due to elective pancreatectomy. Was I Crazy?!

Thanks for your kind words, Cora!! It's been 6 mos since the surgery & you're right, it's been a huge learning curve!! I'm getting there, just feeling overwhelmed at the moment. I'll read the books you suggested, thanks!!

Thanks, Lotsofshots!! EVeryone has been so kind!!! I have really gained a lot of knowledge on the boards here, although, I still have a long way to go!! As I've been saying, I'm just at a point where I'm a bit overwhelmed. Life is definitely better without the constant pain!!

Thanks for taking the time to comment, Terry!! I really enjoy meeting everybody here!! & I have learned a lot!! I hope I can be as helpful as everybody has been to me!!

Hey Jen! Thanks for your comments!!

I could totally get an islet cell transplant but Yes I would have to take immunosuppressive drugs, so I've decided not to go there. I've decided with everybody's help to take the challenge of diabetes head on. I'm learning new stuff every day so maybe I'll be succesful some days!!

I think I agree that maybe I didn't chose diabetes any more than any other diabetes person. Thanks again!!

Thanks, Erin!! I really do LOVE the DOC!! & I have already learned a lot here. I can't thank everyone enough for their kindness & teaching me all the little things that come w D that I NEVER would have learned otherwise!! I guess I'm still in the grieving process. I never expected my islets to fail, so I'm dealing with that.

I spent over 160 days in the hospital last year due to my chrpnic pancreatitis so life is definitely better w/o that damn organ!! I'm sorry your friend has to deal with that awful disease!!

Thanks for taking the time to comment!! I really appreciate your kindness!!

Hey, Gary, thanks for your comments!! I'm slowly learning to deal with my D. I think I just expected to be at a better place by 6 mos after the surgery. I'm learning though that every PWD is different & I have to give myself time to adjust.

Talking w everybody here has been a true blessing!! I just hope I can be half as helpful to others as all of you have been to me!!

Thanks again!!

Thanks for the information - very interesting! I hope your pancreas and kidney last a long time! Do you still have diabetes if you have a new pancreas, or is it like being cured (aside from the medications, of course)?

I'm glad you found this site so early in your diabetes journey! It should be a big help. It took me until about 15 years after my diagnosis to find the (then new) DOC, and I haven't looked back since!

Sandy,

It is possible that your decision saved your life... there have been some studies that people with chronic pancreatitis are at increased risk for pancreatic cancer, and that would be really bad.

That should be off the table now, I would think.

http://www.ncbi.nlm.nih.gov/pubmed/20510834

HPNpilot, that was one of my deciding factors to have the surgery despite the regeduction of my pain & other symptoms. I had already had the disease for almost 26 years so I didn't want it to risk getting pancreatic cancer before I had the surgery because if I had anysigns of the cancer I wouldn't be a candidate for even the pancreatectomy or the autologus islet transplant.

Could you do me a favor & check the link that you've provided to pubmed? I cannot get it to work and I'd like to read it. Thanks!! & thanks for taking the time to comment. I appreciate it!

Sandy- update us on how you are now... all symptoms from the pancreatitis gone? Have an appetite and enjoy eating? Doing fun things you just couldn't do before? Relationships with friends and family have more depth?

I'm guessing your life has improved dramatically, diabetes being an annoyance rather than debilitating by comparison. If so, you won that round, pardner!

The link seems to work for me...here is what you get when you click on it:

est Pract Res Clin Gastroenterol. 2010 Jun;24(3):349-58. doi: 10.1016/j.bpg.2010.02.007.
Pancreatic cancer in chronic pancreatitis; aetiology, incidence, and early detection.
Raimondi S, Lowenfels AB, Morselli-Labate AM, Maisonneuve P, Pezzilli R.
Source
European Institute of Oncology, Milan, Italy.
Abstract
Acute pancreatitis, chronic pancreatitis and pancreatic cancer are responsible for most of the burden of exocrine pancreatic disease. Glandular damage from recurrent bouts of acute pancreatitis can lead to irreversible changes characteristic of chronic pancreatitis. In recent decades accumulating evidence has defined longstanding pre-existing chronic pancreatitis as a strong risk factor for pancreatic cancer. The lag period between diagnosis of chronic pancreatitis and pancreatic cancer is usually one or two decades: pancreatitis appearing a year or two before the diagnosis of pancreatic cancer is often the result of tumour-related ductal obstruction. The risk of developing pancreatic cancer appears to be highest in rare types of pancreatitis with an early onset, such as hereditary pancreatitis and tropical pancreatitis. Even though there is a strong link between chronic pancreatitis and pancreatic cancer, over a 20 year period only around five percent of patients with chronic pancreatitis will develop pancreatic cancer. Until the development of more sophisticated screening procedures, screening is not recommended for patients with chronic pancreatitis.
2010 Elsevier Ltd. All rights reserved.
PMID: 20510834 [PubMed - indexed for MEDLINE]

Hi dwallersv!! Thanks for your interest!!

I'm almost 7 months post op & life is sooooo much better!! The severe, constant, debilitating pain is GONE!!!! I knew when I woke up in the ICU after the surgery that it was gone. I still had the post op pain but I could tell right away that "that" pain was gone. Recovery has been tough but not as bad as I had imagined. In the very beginning, it seemed as if my islets were happy in their new home in my kidney. I was only requiring tiny doses of insulin given mainly to let the islets rest & not be too stressed as they adjusted to life outside of my pancreas. But after a high fever of 103, my c peptide fell to 0.2 & my insulin needs climbed higher than I had been needing. Seems the fever killed off my fragile islet cells.

Eating has been intersting to say the least! I was tube fed for a year before my surgery due to my pancreatitis, so I had to get used to eating again. But I've developed an appetite & I'm actually hungry again. I was afraid that my appetite wouldn't return after having been tube fed for so long, but I'm glad it's back!!

I'm having an issue with eating though since the surgery. I have pain & nausea & sometimes vomiting after eating but luckily it's only associated with eating. And it's a different pain than I had before, but it's disappointing to say the least. I've lost a lot of weight after having initially regained my usual weight in the beginning. I'm going to have to get my tube back & be tube fed again to supplement what I can take orally. The doctors are thinking I have some type of motility problem that has developed since the surgery, or maybe I had it all along but it took a back seat to all the other issues I had going on. I'm hoping that since I will have a jejunostomy tube, it will bypass my stomach & hopefully the pain & nausea will be gone.

Other than the eating issue, life in the other areas is GREAT!!! I'm doing more than I've done in years & I've been able to get back into some of my hobbies, especially sewing. I'm working on making some Christmas presents for family that I haven't been able to do for a number of years. I've also been able to pick up the slack in chores around the house that I haven't been able to do either for a long time. I never thought I'd be so happy that I can vacuum the living room!!

My friends & family are so psyched to see me living a happier, much fuller life!! I've lost a lot of so-called friends over the years due to my chronic illness, but the friends I do have are celebrating my new mostly pain free life with me!! I've ssen a wearyness that was on my husband & son's faces lift & that makes me VERY happy. We're adjusting to my new normal with T1D & it's not easy but we're getting there. I've found a lot of info & support thru the DOC & I want to thank everyone for all your support thru the rough patches!!

So, this is my new life since my surgery in February. And, the surgery was on my 52nd birthday. I began a new life that day, so it couldn't have happened on a more appropriate day!!

I know it is natural to second guess, but I lost a dear friend to acute pancreatitis a few years ago. Hers was caused my gall stone blocking the shared duct between the gall bladder and her pancreas. Diabetes is doable, and as a person with decades of life with type 1, I'd rather have type 1 than type 2. Why? because type 1 is more clear cut - simple science (where complex science but you get my meaning). Type 2 is so insidious. Anyway, you'll catch on and conquer.

Jen, basically I test for fun. No sudden highs or lows, No unexpected results. My last a1c (sorry to brag, but fellow Ds will get how excited I am) was 4.9%. What I find the hardest is when I am thirsty. I instantly thing "I'm high!" but it turns out I'm just thirsty.

Hi Cora,

Why did you have the transplant, were your organs failing or were you at the point where your life was in danger, was your bg too difficult to manage well etc.?

I had my kidney transplant in 2002 after 1 year on dialysis. I elected to go on a steroid avoidance protocol to help my bones and keep my diabetes easier to manage. 5 years later, they started offering steroid avoidance with their pancreas transplants at my center. So I decided to go for it. After 42 years with D I will admit that I was a bit burned out, but I also wanted to try and help my new kidney and other organs as much as I could. The better control has improved my neuropathy (peripheral as well as gastroparesis and heart rate) and I suspect it will help with the longevity of the kidney. The extra surgery was a bit of a risk, but I did ok.

Hi Sandy, I developed diabetes two years ago after partial pancreatedectomy (in my case, I had no choice, i needed the operation to remove a growth in the duodenum). I was told that because its only partial, i probably won't develop diabetes, and -- like you -- I was shocked when it happened.
But I live with it, i lost a lot of weight (I go the way the Dr. Bernstein, very low carb), look and feel great. There's a lot to deal with - watching the food, sugar, insulin... but I'm happy to be alive and well.

On a non-diabetes note, I can share my experience with you post-pancreas, as far as eating/digestion. I have to take pancreative enzymes (creon with every meal, for digestion of fats) but even that didn't completely solve my digestive problems. Then, when I developed diabetes and stopped eating carbs, I suddenly found the digestive problems completely gone! Apparently my body is not capable of digesting carbs properly now. (Eating carbs causes severe diahreah). Nobody warned me about this, and ironically my quality of life is now much improved, as a side effect of having developed diabetes. I mentioned this to other people in a similar situation, and it helped them as well. I have no problem with diary products (one doctor had tried to tell me that might be the culprit,but it was not) nor do I have a problem eating raw or cooked vegetables (except starchy vegetables, like potatoes/yams which I dont eat. and of course I dont eat fruits).

Hi Negg!! Thanks for taking the time to share ur story!! Like u I really didn't have a choice but to have the surgery. I spent more than 160 days last year in the hospital due to acute flares. So, if I had any chance at a normal life, surgery was the way to go. I just switched fro creon to viokace due to severe constipation. No one told me enzymes cause constipation & when I asked if they do my GI told me no, but right there in the med insert it says constipation at the top of the list, even the volkace. I still have to take miralax but I don't have as much of a problem like I did w creon.

That's intesting that carbs cause u diarrhea. I'd never heard that. I'm glad u've found a way of eating that works for u & ur life. I eat moderate carbs & find that I have good control with that. I LOVE fruit!! And, I can't eat dairy as it causes all kinds of GI problems. Isn't it funny how our dr's immediately suspect dairy as the root cause of digestive issues!! Although, I was glad she did cuz for me it worked!! I'm glad u can still do dairy. I miss it!!

It's great that we each have many types of diets to choose from & try & then find whats works for our individual bodies!! As well as differnet methods of treating our diabetes. I use a mini med pump & I LOVE it!! MDI's weren't for me!! I'm not the type to live on a rigid schedule but my pump allows the freedom that my lifestyle offers me. How about you?? How do u treat ur diabetes??

Hope you're having a great holiday wkend!!!

thanks for sharing that info, that is great that it helpe d you :) How do find being on the anti- rejection drugs, so you have side effects from them?