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

Type 1 and LADA
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I had fully functioning Islet cells prior to February 8, 2013. It was the rest of my pancreas that wasn't working. I had long standing, chronic pancreatitis for 26 years. That meant I had unrelenting abdominal pain 24/7, nausea and vomiting with anything I ate. After many hours of research, as many as 4 medical opinions, I decided to go ahead with a total pancreatectomy with a tranplant of my own functioning Islet cells into my kidney. Not the usual place to implant the islet cells but due to my existing clotting disorder, it was not safe to put them into my liver.

In my early post op recovery, my islet cells had started to work. I was only needing what the nurses were calling baby dodes of insulin. This was however, short lived. I got a high fever and this as well as damaged islet cells from the 26 years enduring chronic pancreatitis seemes to have stopped my newly transplanted islet cells from producing insulin. There was still hope that there were islet cells left that could wake up as much as 4-6 months post op. However, this never came to pass.

I was devastated. I knew that T1D was a possibility but I truly didn't expect that to happen to me.

Looking back, was I an idiot to go ahead and remove my pancreas knowing that 26 years with chronic pancreastitis most likely had caused some damage to my islet cells increasing the risk of the transplant not taking??

I'm embarrassed that I now have diabetes but did I choose to have diabetes?? Do I have the right to complain about my diabetes management when I brought this on myself?? Do I belong in the DOC?

If you've followed along this far, Thank you!! I'm just having a moment of doubt that I did the right thing. I'm glad I went ahead and hd my pancreas removed because it has improved the quality of my life from a pain perspective immensely, but did I choose diabetes over chronic pancreatitis??

I had fully functioning Islet cells prior to February 8, 2013. It was the rest of my pancreas that didn't work. I had had long standing chronic pancreatitis enduring severe abdominal pain, nausea and vomiting for over 25 years. After much deliberation, research and as many as 4 medical opinions, I went ahead with a total pancreatectomy with an islet cell tranplant of my own islet cells into my kidney. This is not the usual implantation site but due to my chronic clotting issue, it was not safe to put my Islets into my liver as is usually protocol. I was hoping & praying that the transplant would take & I would not become a T1D. It could take up to 6 months for my transplanted Islet cells to wake up fully & do their job: keeping my blood glucose stable by producing insulin.

My Islets starte to wake up some in the very beginning. I didn't require much insulin at all. We were very excited!! However, I got a fever of 103.0 very soon after the surgery & it seemed to have stopped all of my islet function. We were still hoping that most of my islets were still "asleep" & could still wake up as much as 6 months after surgery. To assess this status, I had my C-peptides followed. (C-peptide is an indicator of how much insulin a body produces. It is measured thru a blood draw.)I never got the much hoped for Islet cell function most likely due to the high fever post op, as well as my islets having been damaged from the 25 years of chronic pancreatitis. My C-peptide was 0.2 at its highest.

I was very depressed & grieving for the loss of my own insulin production. But, do I have a right to complain about having diabetes now, because I chose to have this surgery knowing that diabetes was a risk? Do I belong in the DOC? I feel embarrassed that I have diabetes because I chose to have the surgery and ultimately, the diabetes. It's not a result of my immune system attacking my poor pancreas. I had it ripped out

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Sorry for the technical difficulties I had with this post!!

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Hi Sandy,

I'm so sorry this happened to you. I guess it is natural to have all of these feelings and doubts. You made the best decision at the time to try and deal with severe chronic pain and misery and who knows what your pancreatitis may have lead to in the future. Cancer or something else. I just keep trying to say to myself when I have thoughts like this about things that I wish went differently what someone said to me last September, "shoulda coulda woulda". There are many other people who developed D due to surgery and of course you have the right to mourn, complain and feel whatever you're feeling.

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Just my own humble opinion, but I personally don't think you made the wrong decision. Yes, diabetes can be difficult, but 26 years of pancreatitis is enough pain for one lifetime.

Yes, there will be a learning curve in dealing with diabetes. Yes, you will have days you will still second-guess your decision. But given the choice of possibly living with diabetes and living with chronic, unremitting pain, I believe I would have made the same choice.

I've had fibromyalgia for 26 years. I now have arthritis in both my lower back and both knees and will probably need double knee replacements in the near future. If I could get rid of both the fibromyalgia and the arthritis, I would be one happy camper, even with insulin-dependent diabetes. To me, D is way more manageable than the other two, and certainly way more manageable than chronic pancreatitis.

Do you have the right to complain? Hell, YES! You didn't ask for pancreatitis, and you didn't ask to be put in a position where either choice stunk. So yes, you definitely have a right to complain about having D now.

But if I may make one tiny suggestion...do try not to concentrate on how hard this is, but rather concentrate on learning how to manage diabetes and live a, hopefully, more pain-free life.

And, finally, YES - you DO belong in the DOC.

Ruth

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Thank you meee for taking the time to comment. I'm just feeling a little overwhelmed at the moment. And you're right, my risk of pancreatic cancer was increased due to my chronic pancreatitis.

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Hi Ruth! Thanks so much for your comments. I do agree that life is certainly better without the unremitting pain & other symptoms. I do try to be & think positive every day but I'm just a tad overwhelmed at the moment.

I'm sorry that you have had to have your own struggles with pain. It certainly makes eah day harder than it has to be.

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I'd much rather have diabetes than the chronic pain, and would have made the decision knowing that I would have diabetes. Diabetes is manageable with all the tech we have these days, and what's done is done.

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Hey Sandy, I’m with the others who’ve commented - if I had suffered from that kind of pain for 26 years, I would’ve made the same decision. I was diagnosed T1 17 years ago at age 11, so it’s really all I’ve ever known. I know it might seem overwhelming, and we humans are soooo good at second guessing ourselves, but fact is, I think your life will be so much more pleasant now. Sure, diabetes brings some real struggles, but it’s not debilitating like chronic pain, and I’ve never not been able to do something I set my mind to do. Good luck!

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wow, talk about a no win situation! I would not like to make that decision, but I think I would take D over chronic pain any day. D is crap but at least we can take action to try to avoid complications or halt progress of them.

you do belong here (unfortunately-haha). youll get loads of support and answers here that will make your D road easier! welcome!

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Thanks!! Everyone, including you has been so kind!! I guess I'm just overwhelmed at this point. Thanks for taking the time to comment!! I really appreciate it!!

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Thanks Bojibridge, for the support!! I'm beginning to think that maybe I can do this!! I've been on the pump now for 4 months & although I've had my ups & downs (literally, lol!)I'm finding it much more lfexible than MDI's. I do agree that life is much better without that 24/7 unrelenting pain!! Thanks for your taking the time to comment!!

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I agree, Scott. I can't have them go sew my pancreas back in, LOL!!! I am glad to have diabetes now with all of the available tech gadgets. I do enjoy my pump & CGM so if I had to have T1D, now is a good time. Thanks for your comments!!!

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I may be totally off here, but if you have no autoimmune process going on, wouldn't it be possible to get an islet cell transplant? Would you still need to take nasty anti-rejection drugs for that?

I think anyone who has diabetes belongs here. This disease sucks and everyone needs support! As others have said, I don't think you "chose" diabetes any more than the rest of us.

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I have to say that after one bout of pancreatitis, I consider you incredibly brave to have lived with it for 26 years.

Yes, type 1 can be difficult, but you didn't give it to yourself. It happened because of a necessary surgical procedure. The good news is that you can live a long, productive, fun, happy, and healthy life with the diabetes. It takes some work and some days will be more successful than others. But on the whole you can live a great life.

It will be overwhelming at first and you will have a large learning curve. Many things, some obscure as temperature, some as predictable as hormones, will affect your blood sugar. You will learn to figure out why you went up or down and learn how to dose to control this.

I would suggest 2 books - "Think Like a Pancreas" and "Using Insulin". These will help you work out for yourself how to handle the D. Getting information on boards like this is helpful too, but the bottom line is that we are all different and you will be a bit on your own as far as actual management goes.

Best of luck. You are going to be all right.

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An islet cell transplant from a donor would require an awful lot of anti rejection meds and those can be dangerous. When you get a cell or organ transplant of foreign tissue, it is a natural rejection process that will occur, and not the autoimmune process that is associated with T1. This is why pancreas transplants work (I've had mine for over 5 years now)

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There's no need to stress about making a bad choice. You had to choose between two bad choices! Any sense of loss or grieving, however, are completely understandable.

And yes, you are a legitimate member of the diabetes online community. Your path here may have been different than most but you still struggle with the same issues all of us do. What you learn will help others in the future.

I wish you the best in finding your own way to controlling your BGs. The DOC's collective experience and wisdom is deep. Use it as another tool in your BG control kit.

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Welcome to the DOC. You're here, and you belong, no matter how you came to acquire diabetes, we're all here to support you through it!

I don't think you made a bad decision to have your pancreas removed. I have a really good friend who has had chronic pancreatitis, and it has been so much more debilitating for him than diabetes has been for me. He has literally missed years of his life from being in the hospital with pancreatitis.

There is a big learning curve with dealing with diabetes, and I'm sure that if you're not experiencing that already, you will soon. Allow yourself time to grieve, but please know that this community is here to support you!

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Ah, good to know. Does the autoimmune process not have any impact? For some reason, I thought that was the main reason islet cell transplants weren't used more (I thought they only lasted ~5 years for most people?). I don't know much about this subject so am just speculating out of interest. :)

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Hi Jen. The average expectancy of an islet transplant is about 2 years. The cells are very delicate and that's why your body finds it easier to reject them and you need a lot more meds than with a full organ. I have had a full pancreas transplant and the average life expectancy of it is about a decade.

There is some speculation that once the initial autoimmune storm is over, it tends to not come back. The eventual destruction of my new pancreas (the total organ, not just the islet cells) will not be a different process than the one that will eventually torpedo my new kidney. It's a generalize immune response.

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You belong here as much as anyone else. Diabetes is diabetes no matter what the cause. You say that you chose this disease, I say you had no choice. You didn't choose to be D you chose to have a life free of chronic pain. I say that was a no brainer. It had to be done.

Being D is sometimes not fun and is work but it is manageable, Being D is not painful, Well Ok the constant pokes we must endure hurt a little but you can live a happy productive life as a D and that is worth every thing. Like I said before it was a no brainer.