Last year I was diagnosed with a pancreatic cyst and in July 2016 a large percentage of my pancreas was removed, along with spleen, adrenal gland and a section of bowel. Fortunately the cyst was benign, but I am now diabetic and also need to take pancreatic enzymes to digest my food. For the diabetes, I am on 4 x 500mg Metformin per day and with diet and exercise my last HbA1c was 46. From the start, I was told that I was neither type 1 or 2 and it was somewhat of a relief when a doctor at the Royal Surrey Cedar Centre gave me the 3C label. It felt lonely until then, still does as few people have heard of it and it is not even an option that Diabetes UK give when signing up! Don't know whether I am being stupid or what, but have a place in the LondonSurrey 100 cycle ride at the end of the month (deferred from last year for obvious reasons).
-
Please Remember: Members are only permitted to share their own experiences. Members are not qualified to give medical advice. Additionally, everyone manages their health differently. Please be respectful of other people's opinions about their own diabetes management.
Type 3C
- Thread starter Pete1958
- Start date
- Status
pottersusan
Well-Known Member
- Relationship to Diabetes
- Type 1
Welcome from another Creonista - there are a few of us on here.
Tell me about it! A lot of medics don't realise there are more than two types. It is kind of lonely in our situation, but this forum is brilliant - you've come to best place for support on diabetes (and other things🙂) wise.
I try hard to make diabetes fit into my life, and not to organise my life around diabetes. Do your bike ride - but take plenty of jelly babies with you, just in case.
One of my pet rants is that Diabetes UK don't give us a mention anywhere.
Tell me about it! A lot of medics don't realise there are more than two types. It is kind of lonely in our situation, but this forum is brilliant - you've come to best place for support on diabetes (and other things🙂) wise.
I try hard to make diabetes fit into my life, and not to organise my life around diabetes. Do your bike ride - but take plenty of jelly babies with you, just in case.
One of my pet rants is that Diabetes UK don't give us a mention anywhere.
eggyg
Well-Known Member
- Relationship to Diabetes
- Type 3c
Hi Pete. Welcome from a Type 3C, or as we call ourselves on here, the Creonistas, or the weird diabetics! There is a handful of us on here. I had a distal pancreatectomy and splenectomy almost 10 years ago and am still here to tell the tale. My tumour was also benign which was a relief, I actually didn't become diabetic until 3 years later and was started on Metformin, when my HbA1C got to 60 3 years ago I was started on mixed insulin which reduced it to 52. Last year I was put on MDI ( multi daily injections) which means I can eat a more varied diet as I inject insulin to cover the carbs in my food. The problem with us weirdos is we don't know how much insulin we still have in our knackered old pancreas and it can make it difficult to get "right" sometimes. It certainly keeps me on my toes!
How is your recovery going? It was quite major surgery you had there, I returned to work after 4 months and have just recently retired at the grand old age of 57, not through my ill health but my hubby's, life is too short and all that!
If you have any questions about being a weirdo/ Creonista/ type 3C, fire away. Elaine.
How is your recovery going? It was quite major surgery you had there, I returned to work after 4 months and have just recently retired at the grand old age of 57, not through my ill health but my hubby's, life is too short and all that!
If you have any questions about being a weirdo/ Creonista/ type 3C, fire away. Elaine.
eggyg
Well-Known Member
- Relationship to Diabetes
- Type 3c
pottersusan
Well-Known Member
- Relationship to Diabetes
- Type 1
I agree, but it would be nice to know that we exist. Sometimes I wonder if I'm a figment of my imagination
eggyg
Well-Known Member
- Relationship to Diabetes
- Type 3c
Ha ha! I sometimes wish I was! 🙂I agree, but it would be nice to know that we exist. Sometimes I wonder if I'm a figment of my imagination
Just got back from dog walk and delighted to see your responses, thank you. Love the term Creonista! Operation was 5th July and went back to work start of January, albeit only part-time. Now working four days a week. Recovery seems to be going well, but I do still get the odd aches and pains. 10hour op during which I lost 5 litres of blood, haemoglobin level still below range, but ticking up slowly. When I turn up at hospital now there always seems to be a slight panic on people's faces "Oh your different, we don't know really how to deal with you!". But so far I have found the health professional I deal with supportive, although at times they do need chasing. Elaine, your comment re production of insulin strikes a chord as my BG readings can be very erratic. Some days when I expect it to be low I find readings in the 8s and 9s and other days when I know I have not been so good I can find it reads in the 5s and 6s, so I am still trying to get my head around all the drivers.
So, currently on Metformin and creon as above, along with penicillin, amlodopine, omeprazole, avorstatin, tamurex and iron tablets, definitely rattle. Love my food and do find it difficult at times to be good.
So, currently on Metformin and creon as above, along with penicillin, amlodopine, omeprazole, avorstatin, tamurex and iron tablets, definitely rattle. Love my food and do find it difficult at times to be good.
Northerner
Admin (Retired)
- Relationship to Diabetes
- Type 1
Welcome to the forum Pete 🙂
mikeyB
Well-Known Member
- Relationship to Diabetes
- Type 1
Welcome to the Creonista gang Pete. I'm there because of chronic pancreatitis which is now basically calcified. It does make diabetes control a bit strange, but I've been T1 for more than 20 years before that reared its ugly head.
It was actually me that invented the word Creonista not long after I joined this forum, and it's rather taken off. 🙂 It's not a word used on the pancreatitis forum, because everybody takes Creon there. I suppose over there I should be an insulinista, that would make it fair.
It was actually me that invented the word Creonista not long after I joined this forum, and it's rather taken off. 🙂 It's not a word used on the pancreatitis forum, because everybody takes Creon there. I suppose over there I should be an insulinista, that would make it fair.
Hepato-pancreato
Well-Known Member
- Relationship to Diabetes
- Type 3c
Greetings from another pancreatogenic (type111c) diabetic. I had major pancreatic surgery 5 years ago. Have 10% of my pancreas left. Mine was from chronic pancreatitis. Surgery wasn't a success. Still suffer with chronic pancreatitis plus the added diabetes now. Yes I am on the creon also. Plus numerous other medications. Yes most people have never heard of it. A unique club maybe!
Margaret Wilson
Member
M Wilson ...I have eventually been given a meter after discussion with doc. He said I will be going I insulin anyway so may as well get used to meter. I have taken advice given some months from your forum to monitor my bgs and have taken a note of them daily (my last hb1c was 99) due to be taken again in November.) I stopped Creon some time ago but I am still losing weight. I am now on low carb diet. My readings range from ; fasting 6.2 to 8.2 before dinner 7.8 to 10.7 after dinner 8.5 to 12.8 ( I am assuming these are too high).
Therefore insulin is necessary??? I also had pseudo cyst but gall bladder was not removed because if complications apart from the diabetes I keep quite well. Can I get involved with discussions when eventually
Put on insulin. I did follow advice given before regarding m Davey's letter and followed this faithfully. Thank you for listening again to my story.
Therefore insulin is necessary??? I also had pseudo cyst but gall bladder was not removed because if complications apart from the diabetes I keep quite well. Can I get involved with discussions when eventually
Put on insulin. I did follow advice given before regarding m Davey's letter and followed this faithfully. Thank you for listening again to my story.
Ally beetle
Well-Known Member
- Relationship to Diabetes
- Type 1
Welcome
I had a Whipple's surgery (removal of cancerous part of pancreas, duodenum and gall bladder) in 2012 for PDAC (pancreatic adenocarcinoma). I am in a rare group of survivors. I take Creon (about 10-12/day 25,00u depending what I'm eating)
My pre-existing diabetes stayed more or less under control until 2018 when my HbA1c had reached 65. I had no overt complications. I was started on insulin in the form of Tujeo daily and NovoRapid with meals, 1u per 10g carbs. I also treated myself to a Freestyle Libre sensor which has been a boon. Since then, my control has generally been ok and manageable and my HbA1c is now 42. I can spot hypos well and they do respond in 10-15 minutes with a suitable snack. I understand that patients like us don't have much or any natural glucagon mechanisms to help avoid or control hypos. I keep wine gums in the car and always check my BS before driving.
I just want to encourage all my fellow Type 3c sufferers out there that it is liveable with and to keep going.
My pre-existing diabetes stayed more or less under control until 2018 when my HbA1c had reached 65. I had no overt complications. I was started on insulin in the form of Tujeo daily and NovoRapid with meals, 1u per 10g carbs. I also treated myself to a Freestyle Libre sensor which has been a boon. Since then, my control has generally been ok and manageable and my HbA1c is now 42. I can spot hypos well and they do respond in 10-15 minutes with a suitable snack. I understand that patients like us don't have much or any natural glucagon mechanisms to help avoid or control hypos. I keep wine gums in the car and always check my BS before driving.
I just want to encourage all my fellow Type 3c sufferers out there that it is liveable with and to keep going.
eggyg
Well-Known Member
- Relationship to Diabetes
- Type 3c
Welcome @johnnn from a distal pancreatectomy/ splenectomy survivor 11 years on. Perhaps start your own thread on the newbie section, you will find a tab on the top right hand side to enable you to do so. I agree with you fully, life can be lived as a Type 3c, we are a special bunch. There’s a small handful of us on here so we need to stick together! Good luck. Elaine.
- Status