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Severe pancreatitis leading to removal of pancreas/ diabetes

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twinmumnz

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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 8 weeks post surgery (3 months post initial diagnosis).
Our diabetes centre and diabetes "help" has been totally appalling- we are none the wiser with his diabetes management. He doesn't absorb like "normal diabetic people do"- according to the diabetes centre- and they just told him to inject what he thought would be right. I don't think that is fair. We are intelligent people but this is all very new to us. They (diabetes folk) told us carb counting wouldn't be overly helpful as based on all his BSL numbers, he would "hypo out" if he injected 1 unit per 10 carbs like they normally advise. It's like we are a "hot potato" and each healthcare professional passes us on to another as it's "too hard". He is on glargine, novorapid and creon forte (enzymes for absorption). Technically, he is "surgically induced diabetic" but for the paperwork, they list him as "type 1 diabetic".
He still has more surgery to endure (removal of the drains and the feeding tube) and he feels his life is a living hell right now.
We have 2 small children and I have returned to work after having 3 months off whilst he was at his sickest. The consultant has said he is in for a 12 month recovery from the surgeries and pancreatitis side of things- so no working etc.
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.
 
Re: Severe pancreatitis leading to removal of pancreas/ diab

Hello

Welcome to the forum. I am so sorry to hear what you and your husband have and are, going through.
What are your husbands blood sugar readings like? As he has a feeding tube I take it the hospital means that liquid food is absorbed a lot faster hence the tiny insulin ratios.
Does he have the half unit insulin pen as that could really help fine tune the ratios. (It's called a novopen echo)
Good luck and ask away on here, someone is bound to be along to answer any questions!

Kat x


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Re: Severe pancreatitis leading to removal of pancreas/ diab

Don't despair! My diabetes was caused by having acute pancreatitis. I was in hospital for over 3 weeks and was very ill. I had my gall bladder removed as well. I was diagnosed with having secondary diabetes (type3) which is managed as a Type 1. Now nearly 3 years on I am managing it very well but it involved a complete change of life style !! I am on Novorapid and Levemir and I also have to take Creon with all my meals. It's a bit of a pain as all diabetics will tell you. Good luck :)


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Re: Severe pancreatitis leading to removal of pancreas/ diab

Hello
Have you been on the pancreatitis supporters network, lots of info on managing without pancreas
 
Re: Severe pancreatitis leading to removal of pancreas/ diab

Hello,

Although my story is different to yours, I am a survivor of pancreatic surgery too. My ongoing saga is one of some 27 years' standing. To break down a very lengthy and complex saga into bite size chunks, in 1986 I had pancreatic cysts drained, my gall bladder removed, together with the left lobe of my liver, the latter due to a benign tumour. This was followed, in 1991, by the removal of one third of my stomach, my spleen and two thirds of my pancreas, the latter because of an entirely different benign tumour. I have had to swallow pancreatic enzymes with food ever since. I then developed an underactive thyroid in 2000 and am now being tested for diabetes, because of the random discovery of hyperglycaemia on routine blood tests.

All of the above has been against a background of feeling very unwell for the past 27 years, with no firm diagnosis ever having been made. Like you, I get the feeling often that my case is too complex and just too difficult for the medics, who are all too keen to pass me on another colleague at the first opportunity. I am currently back solely under the care of my GP who, although very supportive over the last quarter of a century, admits that he is out of his depth with my case. His response to my hyperglycaemia has been that it was inevitable and that he would expect me to be insulin dependant within two years.

I suppose we shall just have to wait and see what the future holds for both myself and your husband. I am, however, determined that, if a diagnosis of diabetes is confirmed, I shall receive the very optimal care, support and advice in order to manage yet another addition to my lengthy list of medical problems, from a team who are committed to managing a case as challenging as mine.

I wish your husband and yourself all the very best for the future and the only advice I feel it would be appropriate for me to give would be to keep fighting for the best and most appropriate care available. Your husband has, after all, fought for his life and deserves for that to now be lived in as full and rewarding a manner as possible. Good luck to you both!


Spridgett56

Spridgett56
 
Re: Severe pancreatitis leading to removal of pancreas/ diab

I can simpathise with your husband, I had part of my pancreas removed and developed diabetes within a year. I am lucky in that my consultant understands that because I don't absorb food properly I will have difficulty getting good control. Just had an MRI as they think that what I have left of the pancreas is calcifying and may need removed. My levels are constantly high but the thought is that if I get the pain and sickness sorted the levels will reduce.
I wish you and your family all the best for the future and hope you can get a good consultant to support you.

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