Severe pancreatits resulting in removal of pancreas and diabetes

By Twinmumnz Latest Reply 2013-08-20 06:16:17 -0500
Started 2013-08-17 00:50:15 -0500

Hello everyone. My husband almost died in May of this year when he collapsed at home with horrific abdo pains. Within 3 days he was fighting for his life, with the diagnosis being severe acute pancreatitis. He suffered multi-organ failure and was in the PCU for 10 days. After weeks in hospital he was sent home to "wait" before they did surgery. And this was because he needed to recover from the multi-organ failure. Several weeks later, he became very ill again and that was when they operated as he had very large necrotic collections. They removed his gallbladder (it was healthy but may have caused him problems later) and all of his pancreas. He had drains put in place (for the large collections)and a jejunosotomy feeding tube. We are now 6 weeks post surgery (3 months post initial diagnosis) and although we have the feeding tube running 16 hours/ day and multiple meds, we are on the road to recovery. I am here because we are seriously lacking help with his diabetes management.
We live in New Zealand and I have sheer frustration as I feel like we are a "hot potato" that everyone passes to the next healthcare professional as it is "too hard". His regime is complicated because of the feeding (which is a diabetic one) and his patchy absorbtion of food (he is on creon forte). He does his BSL checking 4 times a day. He is on novorapid at meals if needed and on glargine (long acting insulin) at night- 60units.
I am wanting help in regards to carb counting- no one seems to be able to help with this. Anyone would think that he's the first person to ever have diabetes. He is considered a Type 1 diabetic (technically he is surgically induced diabetic). I also want to hear people's opinions about insulin pumps (here, you have to pay, at around $8000).
I just want to feel welcomed somewhere where people actually understand all of this… and if you've got to the end of this, thank you sooo much for reading.

4 replies

silvie mae
silvie mae 2013-08-20 06:16:17 -0500 Report

Hi Twinmumnz! I'm so sorry to hear about the terrible time your husband and you are experiencing, I can tell you I am on the pump, and I love it, but I have insurance. I know if I had to pay $8,000. I wouldn't have one. Another tool you might consider is the Constant Glucose Monitor. It really is helpful, If I had to choose between the 2, I'd keep the CGM. That's just my personal feeling about it.
If you have a smart phone there are a couple of very helpful free aps to help you with carb counting. One is called Calorie King. There is also a Calorie King book you can probably order online. Another ap I use is called Diabetes ap it has a great data base of foods and their carb content. I go by net carbs, not everyone does. Net carbs are Carbs minus the dietary fiber.
For instance, if a piece of bread has 12 total grams of carbs and 5 grams of dietary fiber I would count it as 7 grams of carb.
The aps I shared with you have been a huge help for me. I am still measuring and weighing my food, at least when I'm home. Most people guess portions I'm just not real comfortable with the guessing yet. If possible I would try to find a good diabetes nutritionalist or see if there are diabetes classes available in your area.
There is a wealth of information on this site and support.
The best advice I can give you is educate! I wish you and your husband all the best. ((Hugs))

Caroltoo 2013-08-20 02:11:50 -0500 Report

Read it to the end; you are welcome and please check in here for continued support. You two have been through a horrific ordeal with his recent surgery. Removal of the pancreas is traumatic both in terms of the "surgically induced diabetes" and psychologically as he realizes he was so close to death.

I hope someone else can give you some solid information on carbohydrate counting as I'm type 2 managing mine with diet and exercise. I've never counted carbs strictly, in fact I tend to avoid/minimize them because I'm type 2.

tabby9146 2013-08-19 09:29:07 -0500 Report

I wish I knew what to say, never having gone through any of that, but I am so sorry. welcome to DC! I do hpe you get lots of support here and perhaps there is someone in a very similar situation or someone who has a spouse that is. hoping things improve

Hart4Him 2013-08-17 08:18:11 -0500 Report

I am sorry to hear about your husband. So much going on. Not sure what you mention by surgically diabetic. About the carbs, we struggle too, my husbands sugar level was about 400 last night. Lost a 3rd of his kidneys. He's in oral meds and insulin. (Not pump) insurance helps. It's prob pretty costly here too, especially now.
I do hope you get the answers your looking for.
Hope he gets better!

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