Lots to learn since being diagnosed Type 2 (ish) a few weeks ago ...

[zippyjojo]

Hi there - my name is Jo and I've recently been diagnosed with Diabetes following a distal pancreatectomy (& splenectomy & cholecystectomy) last November. I had a large mucinous cyst on my pancreas which fortunately was benign. We're trying to manage it with diet & metformin at the moment. I'm building up to 4 a day and today started on 2 with my morning meal - definitely feeling a little bit nauseous and a bit windy this evening (sorry if too much information!). I'm keen to get in touch with others who's had this surgery so that I can pick your brains on a few things ...

 

[Inka]

Welcome @zippyjojo 🙂 There are a number of people here who’ve had pancreatic surgery. I think @eggyg and @The robin are a couple, and possibly @Proud to be erratic too.

Do ask whatever you want. Nothing is silly or trivial, and you’ll find many listening ears here and good support.

 

[zippyjojo]

Welcome @zippyjojo 🙂 There are a number of people here who’ve had pancreatic surgery. I think @eggyg and @The robin are a couple, and possibly @Proud to be erratic too.

Do ask whatever you want. Nothing is silly or trivial, and you’ll find many listening ears here and good support.

Thanks so much for the welcome. One of my questions is more to do with my surgery recovery than the diabetes diagnosis - is that OK to discuss here?

 

[Windy]

@zippyjojo ask away about your surgery recovery, I'm sure I don't have an answer, but others will, all sort of questions get asked on the forum, some of them more tangental to diabetes than others!
Welcome to the forum btw, hope you are recovering, it sounds like you've been through a fair bit recently,
Sarah
PS metformin does give digestive problems for some people. I wasn't one of them, but I felt slightly nauseous for a few days and had a weird, sweet, metallic taste in my mouth. If you're getting the runs or bad digestive problems, let your GP know and they can prescribe slow release metformin instead, which is meant to be a bit gentler.

 

[Inka]

Thanks so much for the welcome. One of my questions is more to do with my surgery recovery than the diabetes diagnosis - is that OK to discuss here?

Of course 🙂 Ask away. I’m sorry I can’t help but there will be people along who can.

 

[Inka]

In the meantime, I did a quick search for you using the keyword “distal” so that you can read other threads that mention it:

https://forum.diabetes.org.uk/boards/search/111753/?q=Distal&o=date

I notice you say “Type 2 (ish)” Have you been diagnosed as that or as Type 3c? There are a number of 3cs here so you’re not alone if that’s your diagnosis.

 

[soupdragon]

Hi and welcome @zippyjojo

I have very little pancreas left, due to pancreatitis in my case. I was diagnosed with Type 3c (pancreatogenic) diabetes in the early days of the pancreatitis and have been treated in the same way as a Type 1 diabetic (with insulin) since then, with the addition of pancreatic enzymes (Creon) as I don't produce enough of those either.

Just wondering if your diabetes has been picked up the your surgical team or GP?
A new diabetes diagnosis so soon after surgery might indicate that it is due to the surgery (Type 3c) and not Type 2. Obviously more likely if a large amount of your pancreas was removed. Something to keep in mind if the diet and metformin don't help.

Afraid I can't help with the recovery from surgery but hope your recovery is going as smoothly as possible.

 

[zippyjojo]

@zippyjojo ask away about your surgery recovery, I'm sure I don't have an answer, but others will, all sort of questions get asked on the forum, some of them more tangental to diabetes than others!
Welcome to the forum btw, hope you are recovering, it sounds like you've been through a fair bit recently,
Sarah
PS metformin does give digestive problems for some people. I wasn't one of them, but I felt slightly nauseous for a few days and had a weird, sweet, metallic taste in my mouth. If you're getting the runs or bad digestive problems, let your GP know and they can prescribe slow release metformin instead, which is meant to be a bit gentler.

Yes thanks my diabetic nurse had mentioned that some people have digestive problems. I've been fine with 1 and 2 tablets and think it's hopefully just going to be for a couple of days while my body gets used to another one and then next week I'm meant to be introducing a 4th tablet.

 

[zippyjojo]

In the meantime, I did a quick search for you using the keyword “distal” so that you can read other threads that mention it:

https://forum.diabetes.org.uk/boards/search/111753/?q=Distal&o=date

I notice you say “Type 2 (ish)” Have you been diagnosed as that or as Type 3c? There are a number of 3cs here so you’re not alone if that’s your diagnosis.

I said type 2 because I'm not really sure. I've become diabetic because of the surgery rather than lifestyle but don't even know what Type3C is (I'm going to google it now!)

 

[zippyjojo]

Hi and welcome @zippyjojo

I have very little pancreas left, due to pancreatitis in my case. I was diagnosed with Type 3c (pancreatogenic) diabetes in the early days of the pancreatitis and have been treated in the same way as a Type 1 diabetic (with insulin) since then, with the addition of pancreatic enzymes (Creon) as I don't produce enough of those either.

Just wondering if your diabetes has been picked up the your surgical team or GP?
A new diabetes diagnosis so soon after surgery might indicate that it is due to the surgery (Type 3c) and not Type 2. Obviously more likely if a large amount of your pancreas was removed. Something to keep in mind if the diet and metformin don't help.

Afraid I can't help with the recovery from surgery but hope your recovery is going as smoothly as possible.

Thank you for replying. Yes, it's due to my surgery. The consultant said that I should get my GP to check my bloods about 3 months after to give my pancreas time to settle down. They were going to start me on insulin too but said my bloods were quite promising when I'd adjusted my diet a bit so that's why we're trying metformin on its own at the moment. To be honest I'm not surprised my HB1AC was high (10.9) because I'd basically been carb loading to build myself up after my surgery and then subconsciously eating loads of sweets & biscuits etc because I knew there was a chance I'd have to stop - stupid I know but hey ho!

 

[Proud to be erratic]

Hi @zippyjojo ,
I had a total pancreatectomy in Feb 20, as part of a Whipple's Procedure (8 hrs in Theatre) for pancreatic cancer. I spent 14 days in hospital and needed 3 months after for recovery from the surgery. Then I had adjuvant chemotherapy as a precaution in case there was any 'C' left, which I struggled with! I'm T3c and was discharged as T1 - which I'm clearly not, but does provide me with the full spectrum of T1 treatments.

Post surgery, apart from becoming an instant diabetic, I had problems with my bowels (effectively incontinent) which was finally resolved after 22 months; probably a bacterial overgrowth which seems to be difficult to confirm other than by elimination of all other possibilities - then an unusual antibiotic which needed approval from somewhere before my Gastroenterologist could write the prescription. That bowel problem made carb counting and insulin taking a huge guessing game.

While this was ongoing, I got a post incisional hernia along the line of my scar. This was officially confirmed at my first post op surgical review and last week it was agreed that I would get this repaired in the coming summer. It seems that many hernias are no longer routinely fixed - unless or until they become strangulated and medically very dangerous.

I also have urinary incontinence, still. It seems that the surgery trauma and a short period with a catheter resulted in my brain and nervous system losing contact with the appropriate muscles. After 26 months I have just started receiving acupuncture in a hope to stimulate my nervous system to re-engage with the muscles. Apparently this is not unusual. The acupuncture has come from my own initiative, not from my GP or the Consultant Urologist - pretty frustrating. Had I known this route existed I would have pursued it many months ago. Its a classic example of needing to persist in telling any medical professional who is listening that urinary incontinence needs help not just an expectation that the sufferer can manage!

I think the funding for this comes under the relatively new allocation of funds to the NHS for social prescribing, which includes post cancer recovering patients as well as those terminally ill and each needing various forms of social (semi-medical) care. I've become an outpatient at a local hospice and that makes me eligible for a range of treatments and help, without a GP referral. Interesting!

Altogether, since my original pancreatic cancer diagnosis, I have had referrals to 5 Consultants and a Specialist dietician; while I'm immensely grateful for the help I've had, I have had to micro-manage all of these and sometimes not-so-gently push to get appointments and help. Covid hasn't helped, but the disconnect is in many ways pretty shameful.

Despite (perhaps also because of) these surgical problems, I've found managing my diabetes the biggest challenge. I got Libre after 12 months and that was a huge help.

Feel free to ask any questions, should you wish.

 

[zippyjojo]

Hi @zippyjojo ,
I had a total pancreatectomy in Feb 20, as part of a Whipple's Procedure (8 hrs in Theatre) for pancreatic cancer. I spent 14 days in hospital and needed 3 months after for recovery from the surgery. Then I had adjuvant chemotherapy as a precaution in case there was any 'C' left, which I struggled with! I'm T3c and was discharged as T1 - which I'm clearly not, but does provide me with the full spectrum of T1 treatments.

Post surgery, apart from becoming an instant diabetic, I had problems with my bowels (effectively incontinent) which was finally resolved after 22 months; probably a bacterial overgrowth which seems to be difficult to confirm other than by elimination of all other possibilities - then an unusual antibiotic which needed approval from somewhere before my Gastroenterologist could write the prescription. That bowel problem made carb counting and insulin taking a huge guessing game.

While this was ongoing, I got a post incisional hernia along the line of my scar. This was officially confirmed at my first post op surgical review and last week it was agreed that I would get this repaired in the coming summer. It seems that many hernias are no longer routinely fixed - unless or until they become strangulated and medically very dangerous.

I also have urinary incontinence, still. It seems that the surgery trauma and a short period with a catheter resulted in my brain and nervous system losing contact with the appropriate muscles. After 26 months I have just started receiving acupuncture in a hope to stimulate my nervous system to re-engage with the muscles. Apparently this is not unusual. The acupuncture has come from my own initiative, not from my GP or the Consultant Urologist - pretty frustrating. Had I known this route existed I would have pursued it many months ago. Its a classic example of needing to persist in telling any medical professional who is listening that urinary incontinence needs help not just an expectation that the sufferer can manage!

I think the funding for this comes under the relatively new allocation of funds to the NHS for social prescribing, which includes post cancer recovering patients as well as those terminally ill and each needing various forms of social (semi-medical) care. I've become an outpatient at a local hospice and that makes me eligible for a range of treatments and help, without a GP referral. Interesting!

Altogether, since my original pancreatic cancer diagnosis, I have had referrals to 5 Consultants and a Specialist dietician; while I'm immensely grateful for the help I've had, I have had to micro-manage all of these and sometimes not-so-gently push to get appointments and help. Covid hasn't helped, but the disconnect is in many ways pretty shameful.

Despite (perhaps also because of) these surgical problems, I've found managing my diabetes the biggest challenge. I got Libre after 12 months and that was a huge help.

Feel free to ask any questions, should you wish.

Hi there and thanks so much for replying. You have been through a LOT and I'm so sorry that you're still having problems from the procedure and all the other stuff. I had my surgery through a roof-top incision and quite a large area of my abdomen is now numb. I've been finding that at certain times of the day I suddenly feel as though I've got a large knot, brick, loaf of bread in my abdomen - it's weird because of course when I press it I can't actually feel it. Do you have any numbness like this from your surgery and do you get these feelings (not sure I've described it very well!).

 

[Proud to be erratic]

Hi Jo,
No, I don't have (nor had) the numbness you describe. My scar was tender for several months and although my insulin Injections into my abdomen were a good 4" below the incision line, I used to hate even going near the incision zone. But no knots or bricks, I'm afraid.
I know that Judy @The robin had a distal panc'y before her total panc'y- by mentioning her forum name this should catch her attention the next time she is on the site. Perhaps she encountered this.

 

[Inka]

Hi there and thanks so much for replying. You have been through a LOT and I'm so sorry that you're still having problems from the procedure and all the other stuff. I had my surgery through a roof-top incision and quite a large area of my abdomen is now numb. I've been finding that at certain times of the day I suddenly feel as though I've got a large knot, brick, loaf of bread in my abdomen - it's weird because of course when I press it I can't actually feel it. Do you have any numbness like this from your surgery and do you get these feelings (not sure I've described it very well!).

I know nothing about your surgery but I’ve read a number of people saying they had numbness after a C section. A quick Google showed me that for some it lasted months. One lady said hers lasted 18 months. It’s due to nerve damage, I believe. The nerves gradually heal and the numbness goes, so hopefully yours will improve.

 

[eggyg]

Morning @zippyjojo. Fellow distal pancreatectomy/ splenectomy patient here. 2007 age 47. Gall bladder out 2001. Same reason as you, benign tumour. I didn’t become diabetic for three years, told type 2 like you, we’re not I now know, we’re type 3c. Metformin and diet and exercise, it’s actually laughable if it wasn’t so serious. Started on insulin four years later, it’s inevitable I’m afraid, the remaining tiny bit of pancreas just conks out. But I’m still here, living the dream! 😉
Re recovery from surgery. My stomach was numb for years, then I gradually got some feeling back but the bit around my belly button is still completely numb. I was off work for five months, one month before surgery and four after. Went back on a phased return. I just did an office job so nothing physical, but tiredness lasted a long time. The one day I just suddenly thought, I feel better. It does take a while. I didn’t have any complications after my discharge from hospital but during the three weeks I was in, I had a pancreatic leak. That was the one of the most painful experience of my life, they fixed it though. Unfortunately, once you’ve had the op that’s not the end, obviously diabetes has already risen it’s ugly head and digestive problems are usually a given, Creon helps but can upset your blood glucose levels, you’ll spend a lot of time looking for loos! Spontaneity won’t ever feature in your life again, but for all that, I’m still here almost 15 years down the line. I live a full and active life, now retired, which I love. Yes, I inject insulin five times a day, take a shed load of Creon every time I eat, have to run for the loo at times, but I do not let it stop me doing what I want to do. I’m grateful I’m alive because without the op the tumour would eventually have become malignant and who knows what may have happened. It’s definitely not a walk in the park being a Type 3c diabetic but it’s manageable. Good luck and any questions please ask me and I’ll do my best to help. Elaine.

Edited to add; the hard knot feeling you have could be internal scarring. Unfortunately they’re inevitable, I have adhesions on my small intestine because of my surgery. This has just been discovered latterly, it does mean I now have a partial bowel blockage and need to be careful what I eat. They could operate but that might give me more internal scarring/ adhesions. I would speak to your doc/consultant just to put your mind at rest. It is a big operation and your body will never feel the same again. Also, my scar still itches like mad sometimes, especially if I’m hot, E45 itch relief cream will help that.

 

[zippyjojo]

Morning @zippyjojo. Fellow distal pancreatectomy/ splenectomy patient here. 2007 age 47. Gall bladder out 2001. Same reason as you, benign tumour. I didn’t become diabetic for three years, told type 2 like you, we’re not I now know, we’re type 3c. Metformin and diet and exercise, it’s actually laughable if it wasn’t so serious. Started on insulin four years later, it’s inevitable I’m afraid, the remaining tiny bit of pancreas just conks out. But I’m still here, living the dream! 😉
Re recovery from surgery. My stomach was numb for years, then I gradually got some feeling back but the bit around my belly button is still completely numb. I was off work for five months, one month before surgery and four after. Went back on a phased return. I just did an office job so nothing physical, but tiredness lasted a long time. The one day I just suddenly thought, I feel better. It does take a while. I didn’t have any complications after my discharge from hospital but during the three weeks I was in, I had a pancreatic leak. That was the one of the most painful experience of my life, they fixed it though. Unfortunately, once you’ve had the op that’s not the end, obviously diabetes has already risen it’s ugly head and digestive problems are usually a given, Creon helps but can upset your blood glucose levels, you’ll spend a lot of time looking for loos! Spontaneity won’t ever feature in your life again, but for all that, I’m still here almost 15 years down the line. I live a full and active life, now retired, which I love. Yes, I inject insulin five times a day, take a shed load of Creon every time I eat, have to run for the loo at times, but I do not let it stop me doing what I want to do. I’m grateful I’m alive because without the op the tumour would eventually have become malignant and who knows what may have happened. It’s definitely not a walk in the park being a Type 3c diabetic but it’s manageable. Good luck and any questions please ask me and I’ll do my best to help. Elaine.

Thank you Elaine - it is SO lovely to speak to someone who's been through it too! Digestion wise I'm absolutely fine - literally (without wanting to show off) can eat anything and nothing in that department seems to be affected. The consultant explained that the part of the pancreas (body & tail) that was being removed is responisible for most of but not all of my insulin production and that the head does the digestive enzymes etc - I'm keeping everything crossed that this carries on working ok (but maybe I'm being naive in doing so?). I know exactly what you are talking about with the pancreatic leak. I had one last year after an endoscopy that went into the cyst. I never want to feel pain like that again. From that leak, when I had a PET scan, they thought my cyst had already turned cancerous and spread but many tests later they realised it was inflammation from the leak. When the surgeon opened me up he said it was a real mess in there (thanks!). I was very lucky after the op. Drain for 3 weeks which in a way was a good thing as it kept me from overdoing things. Slight hiccup with my scar on Christmas Day from taking the turkey in and out of the oven, but apart from that the recovery has been plain sailing. The consultant mentioned that my abdomen would stay numb but that my brain would stop recognising it. It's almost that this feeling comes on when I've been eating or drinking so maybe it's just when the stomach expands a bit and presses into the area that had all the work done - or maybe I've got an alien in there ... I've got an appointment at the Diabetes Medicine unit in a couple of weeks so hopefully will be able to discuss it all a lot more there re Type 2 or Type 3C. My diabetic nurse is lovely and very switched on which I'm grateful for and they got into action with everything incredibly quickly. Do you take daily penicillin because of your spleen? I'm thinking possibly not if you were under 50 when they removed it. I have to take 2 x 250mg a day. I'm taking some really good probiotics (Symprove) which I've been having for 11 weeks now and the added complications of the antibiotics seem to have stopped. Oh the joys of getting older! Right - now off to work out what I can have for breakfast. Oh and my cyst probably got discovered because I had some gallbladder pain (gallstones), so every cloud !

 

[eggyg]

Thank you Elaine - it is SO lovely to speak to someone who's been through it too! Digestion wise I'm absolutely fine - literally (without wanting to show off) can eat anything and nothing in that department seems to be affected. The consultant explained that the part of the pancreas (body & tail) that was being removed is responisible for most of but not all of my insulin production and that the head does the digestive enzymes etc - I'm keeping everything crossed that this carries on working ok (but maybe I'm being naive in doing so?). I know exactly what you are talking about with the pancreatic leak. I had one last year after an endoscopy that went into the cyst. I never want to feel pain like that again. From that leak, when I had a PET scan, they thought my cyst had already turned cancerous and spread but many tests later they realised it was inflammation from the leak. When the surgeon opened me up he said it was a real mess in there (thanks!). I was very lucky after the op. Drain for 3 weeks which in a way was a good thing as it kept me from overdoing things. Slight hiccup with my scar on Christmas Day from taking the turkey in and out of the oven, but apart from that the recovery has been plain sailing. The consultant mentioned that my abdomen would stay numb but that my brain would stop recognising it. It's almost that this feeling comes on when I've been eating or drinking so maybe it's just when the stomach expands a bit and presses into the area that had all the work done - or maybe I've got an alien in there ... I've got an appointment at the Diabetes Medicine unit in a couple of weeks so hopefully will be able to discuss it all a lot more there re Type 2 or Type 3C. My diabetic nurse is lovely and very switched on which I'm grateful for and they got into action with everything incredibly quickly. Do you take daily penicillin because of your spleen? I'm thinking possibly not if you were under 50 when they removed it. I have to take 2 x 250mg a day. I'm taking some really good probiotics (Symprove) which I've been having for 11 weeks now and the added complications of the antibiotics seem to have stopped. Oh the joys of getting older! Right - now off to work out what I can have for breakfast. Oh and my cyst probably got discovered because I had some gallbladder pain (gallstones), so every cloud !

Hi. Yes I take penicillin same as you 2 x 250 twice a day. My cyst too was caused by gallstones originally which caused pancreatitis back in 2001. We’re twins! Enjoy work, I’m off out for a nice walk in the Eden Valley in beautiful Cumbria. The joys of being retired.

 

[zippyjojo]

Hi. Yes I take penicillin same as you 2 x 250 twice a day. My cyst too was caused by gallstones originally which caused pancreatitis back in 2001. We’re twins! Enjoy work, I’m off out for a nice walk in the Eden Valley in beautiful Cumbria. The joys of being retired.

Ooh lucky you! I love Cumbria. Say "hello" to the hills from me 🙂

 

[Leadinglights]

I still have a numb area either side of my operation scar from a hysterectomy 40 years ago and as you say it sometimes gets itchy, so a good tip about the E45.

 

[everydayupsanddowns]

I said type 2 because I'm not really sure. I've become diabetic because of the surgery rather than lifestyle but don't even know what Type3C is (I'm going to google it now!)

Goodness @zippyjojo - what a lot you’ve been through!

This page will give you a basic introduction to type 3c

What is type 3c diabetes?

You may have heard of the more common types of diabetes like type 1, type 2 and gestational. But there are actually many other types of diabetes that aren't as well known. Type 3c diabetes develops because of the damage to the pancreas, which can happen for a few different reasons. And although...

www.diabetes.org.uk

And of course you have our friendly forum ‘creonistas’ whose brains you can pick 🙂