-
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.
Hi ♀️
- Thread starter D54
- Start date
- Status
Docb
Moderator
- Relationship to Diabetes
- Type 2
Inka
Well-Known Member
- Relationship to Diabetes
- Type 1
Welcome @D54 🙂 As said above, that sounds like Type 3c. @eggyg and @Proud to be erratic and @martindt1606 are just a few of the people here who have that type of diabetes.
Lots of the care overlaps with Type 1 and as I’m a Type 1, I’d recommend two books about Type 1:
Think Like a Pancreas’ by Gary Scheiner.
And Type 1 Diabetes in Children Adolescents and Young People by Ragnar Hanas (ignore the title - it’s great for adults too)
Take things slowly and cautiously. Keep hypo treatments near you at all times and take them with you when you go out, along with a snack or two so you know you have everything you need.
Are you carb-counting and adjusting your mealtime insulin? What insulins are you on? Do you have the Libre?
eggyg
Well-Known Member
- Relationship to Diabetes
- Type 3c
Welcome @D54 to the club no one wants to join. I had most of my pancreas removed in 2007 aged 47. I’ve been diabetic since 2010 and on insulin since 2014.
As has been mentioned we are classed as Type 3c as we’re not autoimmune like Type 1s. The treatment is pretty much the same ie insulin but we have the added complication of our almost non existent digestive enzymes. I’m assuming you’re on Creon. This just means things can be a bit more complicated as what we eat sometimes doesn’t hang around for long. I’m not trying to frighten you but you need to be aware. Read the book’s recommended, research Type 3c, there’s not much and even some health professionals haven’t heard if it. More importantly speak to your GP, consultant, diabetes nurse and ask for help. You should have access to educational courses ( carb counting for example), Freestyle Libre, I won’t try and explain that but there’s loads of info. It’s a huge learning curve and you’ll still be recovering from your surgery, I would concentrate on getting well at the moment. Could I ask what insulin you’re on? It may help us to guide you on your journey. I’d just like to add, I’m still here 15 years on, living a “normal ish” life, no spontaneity unfortunately but I’m too old for that now anyways! Any questions please do not hesitate to ask. Elaine.
As has been mentioned we are classed as Type 3c as we’re not autoimmune like Type 1s. The treatment is pretty much the same ie insulin but we have the added complication of our almost non existent digestive enzymes. I’m assuming you’re on Creon. This just means things can be a bit more complicated as what we eat sometimes doesn’t hang around for long. I’m not trying to frighten you but you need to be aware. Read the book’s recommended, research Type 3c, there’s not much and even some health professionals haven’t heard if it. More importantly speak to your GP, consultant, diabetes nurse and ask for help. You should have access to educational courses ( carb counting for example), Freestyle Libre, I won’t try and explain that but there’s loads of info. It’s a huge learning curve and you’ll still be recovering from your surgery, I would concentrate on getting well at the moment. Could I ask what insulin you’re on? It may help us to guide you on your journey. I’d just like to add, I’m still here 15 years on, living a “normal ish” life, no spontaneity unfortunately but I’m too old for that now anyways! Any questions please do not hesitate to ask. Elaine.
Hi Elaine thankyou for replying to my post. I was having flare ups of pancreatitis for three years and a cyst was growing on the head of my pancreas. They were only going to remove the head with the cyst but once under surgery they found that my pancreas was very inflamed and it needed to be removed. I am recovering quite well and am taking Creon and Lantus insulin and a secondary rapid pen too. It’s all a bit confusing at the minute where eating and testing are concerned so just trying to get my head around what to eat and how much. I have always been very fit and healthy so this has come as a bit of a shock to me to try and adjust
Proud to be erratic
Well-Known Member
- Relationship to Diabetes
- Type 3c
- Pronouns
- He/Him
Hello @D54,
I had a total pancreatectomy some 26 months ago as part of treatment for pancreatic cancer. So I know little about pancreatitis, but enough about living without a Pancreas.
Yes, it is inevitably confusing and alarming - the abrupt transition from fit and well to "no pancreas". But it is manageable and things do settle down. My close friends and family know about my new status; but outwardly it would seem that I am normal, fit and well to others. I now do almost everything I was doing 30 months ago - including heavy gardening!!
I take Creon, my Gastronterologist described it as in industrial quantities! It takes some trial and error to get the dosing right, but you CAN NOT overdose so start with lots and scale down as you find a level that give you a comfortable bowel movement, and an acceptable output. If too loose, unreaonably smelly or messy - then up the dose!
If you'd like to tell us a bit more about what meds you are now on, including the insulin(s) and their doses - then we can tailor responses accordingly. Have you been introduced to carb counting, or are you on fixed doses for different meals? Do you have Libre?
Apologies for the apparent bombardment with Qs.
All for now; I'll monitor this thread - just by replying to you has put a digital marker on your thread and I'll get alerts to further responses. Ask any questions about anything that concerns you. No question is stupid; we've all been in your position. Regards.
Hi Thankyou for your reply. I have managed to adapt my Creon now and it does seem as if I am getting right now. I am so grateful that I have read your comments because I was so confused of what to do how many to take. I have just managed to get things in order with my GP and diabetic nurses who have been really supportive and helped me understand it all. I struggle with the counting the carbs and wondering how much to eat should I inject every time I eat or snack so at the minute it’s like how do I do this. I am recovering quite well as I had my op on 24th February 2022 I came out of hospital in March but I am up and about and seem to be managing quite well.
eggyg
Well-Known Member
- Relationship to Diabetes
- Type 3c
@D54 glad you’ve got the hang of the Creon, be warned though if you try a different food! The best piece of advise I was given re Creon was don’t take it before you eat, have a couple of mouthfuls of your meal first. Thanks @mikeyB . If you have more than one course, split your Creon. Also as it’s not a drug but an enzyme you can’t overdose on it, you need what you need.
Re your insulin, has anyone given you any guidelines of the amounts you need or are you on a fixed dose? You need to take it everytime you eat but if you’re eating every two hours you could end up taking too much ( insulin stacking) and could potentially hypo. Again I’m not trying to frighten you but it’s important you don’t take too much insulin. I know there’s loads to take in but it’ll soon become second nature, we’ve no choice unfortunately. Like @Proud to be erratic I just got on with my life as it was before, within reason obviously. I was lucky enough to retire at 57 and my husband and I live a very full and busy life. I refuse to let my “conditions” stop me doing anything I want, TBF I had a young family in 2007 and just had to get on with things! What doesn’t kill you makes you stronger. You’ll get there, you’ve got us to help you every step of the way.
Join us in the Waking Average thread on the General Messageboard, we’re all daft as a brush, not only do we post our waking BGs we rant, we joke, we describe our up coming day, we post photos, we condole and congratulate. It’s good craic. We’re more than our diabetes. Elaine.
Re your insulin, has anyone given you any guidelines of the amounts you need or are you on a fixed dose? You need to take it everytime you eat but if you’re eating every two hours you could end up taking too much ( insulin stacking) and could potentially hypo. Again I’m not trying to frighten you but it’s important you don’t take too much insulin. I know there’s loads to take in but it’ll soon become second nature, we’ve no choice unfortunately. Like @Proud to be erratic I just got on with my life as it was before, within reason obviously. I was lucky enough to retire at 57 and my husband and I live a very full and busy life. I refuse to let my “conditions” stop me doing anything I want, TBF I had a young family in 2007 and just had to get on with things! What doesn’t kill you makes you stronger. You’ll get there, you’ve got us to help you every step of the way.
Join us in the Waking Average thread on the General Messageboard, we’re all daft as a brush, not only do we post our waking BGs we rant, we joke, we describe our up coming day, we post photos, we condole and congratulate. It’s good craic. We’re more than our diabetes. Elaine.
SB2015
Well-Known Member
- Relationship to Diabetes
- Type 1
Hi @D54 . Very pleased that you have found the forum, and already in touch with our Type 3c resident expert in @eggyg . There is so much to get the hang of at the start.
It will help us if you are able to tell us whether you are on fixed doses for your meals or whether you have been taught how to adjust your doses, which then gives you a lot more flexibility in what you eat and how much you eat, although I know that the creon has its own issues to deal with too.
Do keep in touch and fire away with any questions that arise. Nothing is considered silly on here.
It will help us if you are able to tell us whether you are on fixed doses for your meals or whether you have been taught how to adjust your doses, which then gives you a lot more flexibility in what you eat and how much you eat, although I know that the creon has its own issues to deal with too.
Do keep in touch and fire away with any questions that arise. Nothing is considered silly on here.
Hi thankyou for your message I feel really glad I joined as everyone has been so supportive in such a short space of time so thankyou to all. I am 12 units of a long term insulin and 0-4 units of the rapid which I inject before I eat. It seems to be working out for me but sometimes I want to eat more as I get hungry but I am worried incase my levels go up too high. It’s all still new so I guess I am trying to go to far ahead of myself. I came out of hospital in March this year so maybe I am expecting too much from myself
Last edited by a moderator:
- Relationship to Diabetes
- Type 1
- Pronouns
- He/Him
Proud to be erratic
Well-Known Member
- Relationship to Diabetes
- Type 3c
- Pronouns
- He/Him
Hello again @D54 ,
There is a big learning curve ahead of you and I'm really pleased that you are not only tied in to a helpful GP but also to a Diabetes Specialist Nurses (DSN) team. The latter will be essential to you in the coming months as you sort out carb counting and ratios of insulin to carbs.
I find (and I read on this forum that I'm not alone with this) that I need to pre-bolus (ie take my bolus ahead of eating); for breakfast I need 45 minutes for my insulin to 'arrive' before I can eat, some 20-30 mins before lunch (if I bother with lunch) and 10-20 mins before dinner. I need my BG to be below c.8 before I start eating, otherwise the insulin is still wrestling with my elevated BG and doesn't deal with my incoming carbs - so I will end up high until my next bolus.
Sometimes, fortunately not too often, if I'm bolusing into a high and have added extra insulin to correct that, as well as insulin for the carbs I have had to wait up to 2 hrs before eating. This is very frustrating for me and downright inconvenient for my wife! But needs must .... Basically the higher my BG the greater is my body's natural resistance to insulin and if very high I need to increase (harden) my correction ratio to overcome that resistance.
I offer this detail into what I have found, by trial and error and after advice from this forum - to give you a better insight into how 'confusing' the process of carb counting can seem and how unpredictable the outcomes can be. Even though you might have most diligently counted (or guestimated) the initial carbs! But DON'T allow this to totally dishearten you; just knowing that there is a bit more to bolus estimating than meets the eye is helpful and reassuring, particularly when it doesn't seem to have worked exactly as intended. It takes time to get to grips with all of this; I'm getting better at it, but still learning.
So, 2 months since the surgery, you sound as though you are in a good place, relatively speaking. As you say in a later post, don't expect too much from yourself. Don't be surprised if you need a full 3 months just to recover from that trauma of the surgery. I did and although its not my way to sit and do nothing, I certainly took things easy and (as advised by the hospital) "listened" to my body and didn't "fight" the recovery. But I did do a lot of gentle walking to help rebuild my strength.
I see you've categorised yourself as T1, whereas I think you might find it tidier to reassign that as T3c, particularly on this forum, where in later posts T1 might mislead others who know about these things. I gave some observations this morning to a different thread (2 for the price of 1 ... bargain, right?) specifically about being T3c. I'm copying them here, in case they are of interest and/or relevance to you:
"Welcome also to the T3c club. You are part of a very small group of diabetics. To put that in perspective about 90% of all those with Diabetes Mellitus (DM) are T2 (their bodies make insulin but resist that insulin, leading to very elevated Blood Glucose (BG)) without medications or insulin, in conjunction with taut carb control. About 10% are T1 (they have an auto-immune condition and simply don't make any insulin), so take insulin by injection (or pump) and broadly can eat what they wish. T3 is for people whose pancreas has become damaged, from all sorts of circumstances and T3s are less than 1% of all those with DM; T3 comes in different flavours, from 'a to k', and T3c includes those people who get diabetes after pancreatitis, along with people like me who have little or no pancreas after surgery. I had pancreatic cancer and surrendered all of my panc'y. T3cs are rare!
This can cause difficulties, since most medical professionals have never even heard of T3c and can be very ignorant of the consequences and problems that this diagnosis can create. You are insulin dependent and should be treated as akin to T1. This is important. There are very few guidelines from the National Institute for Clinical Excellence (NICE) that even mention T3c. Most A&E clinics won't know that T3cs are insulin dependent. So if your medical notes refer to you as T1 gracefully accept that; if they say T3c, make sure that any medical professional knows that means you are insulin dependent - don't assume that they will already know this! Being akin to T1 means you should receive all the care that T1s should receive, which includes being under the care of a Hospital based Specialist Team and you should have direct access to a Diabetes Specialist Nurse (DSN). As you adjust to your new world of living with DM, you might well need support and guidance from your DSN - I certainly did."
I probably should have also said the defined Type of Diabetes comes from the cause, not defined by the treatment or the first diagnosis. The above said - I didn't glean from your original post what ailment took you to hospital and thus why you had your pancreas removed; this might mean you are another variant of T3.
Which basal (long acting) insulin are you on? There are a number of different basals and they can have slightly different behaviours. Do you take your basal at roughly the same time of day and if so morning or evening? I will explain why this can be relevant.
- Status