A learning curve

[pottersusan]

Hi
I'm Susan. I became diabetic in July this year when I had my pancreas removed. Just to make life simple my stomach was removed too. Is there anybody out there with the same probs of having to eat almost constantly to keep the weight up? This plays havoc with blood sugar - and the experts don't seem to know the answer!😱

 

[Northerner]

Hi Susan, welcome to the forum 🙂 We do have a couple of members who became diabetic after having their pancreas removed, although I think you are the only one I know of who has also had their stomach removed - that must present many extra difficulties

What sort of insulin regime are you on? I'm wondering if an insulin pump might be more appropriate if you are having to eat frequently - has this been suggested?

 

[Robster65]

Hi susan. Welcome 🙂

Wow. That must present a few more problems than most of us face. I hope we can give you a few ideas that you can take back to the doctors.

Rob

 

[pottersusan]

Hi Susan, welcome to the forum 🙂 We do have a couple of members who became diabetic after having their pancreas removed, although I think you are the only one I know of who has also had their stomach removed - that must present many extra difficulties

What sort of insulin regime are you on? I'm wondering if an insulin pump might be more appropriate if you are having to eat frequently - has this been suggested?

.

I've been researching pumps and think this might be the answer. I'm seeing the consultant next week and will be asking the question. It's useful to know that an 'experienced diabetic' thinks it might be the answer. I'm sure that the he'll want to try cheaper options first! But since the NHS must have spent a good few thousand ?s on my operation they shouldn't be cheapskates now!

I'm taking Lantus once a day and injecting Novorapid 3 times

 

[Robster65]

.

I've been researching pumps and think this might be the answer. I'm seeing the consultant next week and will be asking the question. It's useful to know that an 'experienced diabetic' thinks it might be the answer. I'm sure that the he'll want to try cheaper options first! But since the NHS must have spent a good few thousand ?s on my operation they shouldn't be cheapskates now!

I'm taking Lantus once a day and injecting Novorapid 3 times

That is the standard MDI regime for a T1 diabetic who eats 3 meals a day.

Since you're basically grazing, you'll struggle to match the 3 peaks it produces, which you would normally match to your eating habits. In fact, the lantus alone would probably give a better match to your eating, or another basal insulin. Perhaps a 12 hour one that you can give athigh dose through the day for eating and lower through the night for fasting.

But a pump will do the job far better and easier.🙂

Rob

 

[pottersusan]

Hi susan. Welcome 🙂

Wow. That must present a few more problems than most of us face. I hope we can give you a few ideas that you can take back to the doctors.

Rob

Life is interesting, I must admit. To be technical I'm apparently a Type 3 diabetic (ie medically created) - but treat as type 1. I shouldn't complain as I'm here to tell the tale (after removal of a 5kg tumour!)

Susan🙂

 

[Robster65]

Life is interesting, I must admit. To be technical I'm apparently a Type 3 diabetic (ie medically created) - but treat as type 1. I shouldn't complain as I'm here to tell the tale (after removal of a 5kg tumour!)

Susan🙂

That positive outlook comes through in your posts. I hope you can stick with us through your learning curve. We're all on a constant one I think. 🙂

Rob

 

[Northerner]

You're on the same insulin regime as me, so I can appreciate that it must be difficult maintaining good blood sugar control if you have to eat frequently. A pump would give you much more flexibility since you woul be able to administer extra insulin whenever you needed to eat, but without having to give an extra injection. The pump would also give you much better basal control than lantus, given your circumstances. As you say, there may be cheaper options but I doubt if there are any that would be more suitable.

I would suggest getting in touch with the people at Input:

http://www.input.me.uk/

They should be able to provide you with lots of information and support about whether a pump would help and how to go about getting one - they are wonderful people! 🙂

 

[pottersusan]

That is the standard MDI regime for a T1 diabetic who eats 3 meals a day.

Since you're basically grazing, you'll struggle to match the 3 peaks it produces, which you would normally match to your eating habits. In fact, the lantus alone would probably give a better match to your eating, or another basal insulin. Perhaps a 12 hour one that you can give athigh dose through the day for eating and lower through the night for fasting.

But a pump will do the job far better and easier.🙂

Rob

It's reallly useful hearing about the different options. When you're new you don't have much of an idea of what is available. Thank god for the internet and sites like this.

Susan 😎

 

[HOBIE]

Good luck with sorting things ! I read your post about a hour ago & couldnt think what to say to try & help. I have been on a pump for a while now & its not perfect but i think it would be a good opption. If you want to eat just dial in carbs to pump & bolus wizard works it out for you ! (when pump is set up for you). You are little bit different to most of us ! 😉 All the best !

 

[trophywench]

Hi Susan

Cor mate! - traumatic or traumatic.

So if you don't mind me asking .... what kind of diet are you able to consume? Currently and in future? I mean I know with gastric banding or bypass, it's very small amounts of quite specialised stuff to begin with - which obviously most of us don't have experience of - but there my knowledge ends.

However between us we do know quite a lot about diabetes and we will of course try and help all we can, and if we can get a grasp of what you are up against nutritionally from the operation side of stuff, then this should help us to help you - and you'll also be teaching us!

Hopefully that might stop us suggesting you eat X or Y that you can't possibly cope with, or not eat A or B, that you can't cope without......

 

[margie]

Hi Susan and welcome to the forum.

It certainly sounds like a challenge for you.

Another option you might want to look into is an islet transplant. At the moment they are not very successful but they do exist. The islets are infused into the Liver and from there start to produce insulin.

 

[pottersusan]

Hi Susan

Cor mate! - traumatic or traumatic.

So if you don't mind me asking .... what kind of diet are you able to consume? Currently and in future? I mean I know with gastric banding or bypass, it's very small amounts of quite specialised stuff to begin with - which obviously most of us don't have experience of - but there my knowledge ends.

However between us we do know quite a lot about diabetes and we will of course try and help all we can, and if we can get a grasp of what you are up against nutritionally from the operation side of stuff, then this should help us to help you - and you'll also be teaching us!

Hopefully that might stop us suggesting you eat X or Y that you can't possibly cope with, or not eat A or B, that you can't cope without......

I can eat anything I like amazingly, but have been told not to bother with fruit n veg as they're not calorie dense enough! I have the capacity of a small wine glass for food. I know being diabetic i shouldn't eat too much sugar, but sugar and fat are the only ways I can consume enough calories. At the moment I'm consuming lots of the party foods in the supermarkets 'cos they're really high calorie! 😉

 

[pottersusan]

Hi Susan and welcome to the forum.

It certainly sounds like a challenge for you.

Another option you might want to look into is an islet transplant. At the moment they are not very successful but they do exist. The islets are infused into the Liver and from there start to produce insulin.

I hadn't heard of that. I must confess that I won't be putting myself under the surgeon's knife again in a hurry, though my surgeon did an amazing job and is a really nice guy. The transplant is something to think about in the future.

I've an appointment with the diabetic consultant next week so will be discussing pumps whether he likes it or not!

 

[Copepod]

Welcome Pottersusan. I've also replied to your other thread, suggesting you ask to see a dietician - diabetes consultant should be able to refer you.

 

[Ellie Jones]

Hi Susan welcome to the forum..

I've come across somebody in similar position to you a few years ago, while she and I were fighting for pump funding (often easier to achieve now a days)..

If I remember rightly when the pancreas is removed then this also effects the liver and your body loses the safety net of being able to dump glucose into the system as no hormone response from the pancreas!

The pump is a pretty good piece of kit, and yes would be suited to your particular set of problems, a lot of things about pumps that make them very flexible indeed, as you use them pro-actively and reactively a lot easier than using injections..

You would find have 3 different bolus mode idea to help match the adsorption of high fat foods, and if you then over shot a slightly you have the advantage of the extended or multi-wave to stop it delivering any more insulin, or even using a Temp Basal rate to slow off the insulin etc...

As to Islet Transplanting, something I haven't looked to in great depth, as it's something I personally would consider, but I assume that you would need a pancreas to actually transplant the Islet cells into.. Part from that having to take anti-rejection drugs which can come with their own side effects.. Also very few can stop their insulin completely and this only tends to last for a short period of time as it's still a treatment in it's infancy... But worth looking into to see if it maybe a possibility, if it is how you feel about the idea,

 

[margie]

As to Islet Transplanting, something I haven't looked to in great depth, as it's something I personally would consider, but I assume that you would need a pancreas to actually transplant the Islet cells into..

That was what I thought until last week when the DSN was talking about it and she said that they were injected and ended up in the liver. When I checked before posting all the articles I found talked of infusing the cells into the liver. I would not fancy taking all the drugs either but some people feel it preferable to the injections and testing.

 

[pottersusan]

Hi Susan welcome to the forum..

I've come across somebody in similar position to you a few years ago, while she and I were fighting for pump funding (often easier to achieve now a days)..

If I remember rightly when the pancreas is removed then this also effects the liver and your body loses the safety net of being able to dump glucose into the system as no hormone response from the pancreas!

The pump is a pretty good piece of kit, and yes would be suited to your particular set of problems, a lot of things about pumps that make them very flexible indeed, as you use them pro-actively and reactively a lot easier than using injections..

You would find have 3 different bolus mode idea to help match the adsorption of high fat foods, and if you then over shot a slightly you have the advantage of the extended or multi-wave to stop it delivering any more insulin, or even using a Temp Basal rate to slow off the insulin etc...

As to Islet Transplanting, something I haven't looked to in great depth, as it's something I personally would consider, but I assume that you would need a pancreas to actually transplant the Islet cells into.. Part from that having to take anti-rejection drugs which can come with their own side effects.. Also very few can stop their insulin completely and this only tends to last for a short period of time as it's still a treatment in it's infancy... But worth looking into to see if it maybe a possibility, if it is how you feel about the idea,

Showing my almost total ignorance about diabetes... What is bolus mode? I imagine the lantus is the basal thing.
You're all giving me lots of ammunition for my conversation with the consultant next week.

 

[Northerner]

Showing my almost total ignorance about diabetes... What is bolus mode? I imagine the lantus is the basal thing.
You're all giving me lots of ammunition for my conversation with the consultant next week.

Bolus is the fast-acting insulin you take to cover the carbs in food - novorapid in your case🙂

 

[pottersusan]

Bolus is the fast-acting insulin you take to cover the carbs in food - novorapid in your case🙂

Thank you, Northerner. It's a whole new language. 🙂