# A learning curve



## pottersusan (Dec 7, 2011)

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 (Dec 7, 2011)

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 (Dec 7, 2011)

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 (Dec 7, 2011)

Northerner said:


> 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 (Dec 7, 2011)

pottersusan said:


> .
> 
> 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 (Dec 7, 2011)

Robster65 said:


> 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 (Dec 7, 2011)

pottersusan said:


> 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 (Dec 7, 2011)

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 (Dec 7, 2011)

Robster65 said:


> 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.
> 
> ...



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 (Dec 7, 2011)

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 (Dec 7, 2011)

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 (Dec 7, 2011)

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 (Dec 8, 2011)

trophywench said:


> Hi Susan
> 
> Cor mate! - traumatic or traumatic.
> 
> ...



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 (Dec 8, 2011)

margie said:


> 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 (Dec 8, 2011)

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 (Dec 8, 2011)

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 (Dec 8, 2011)

Ellie Jones said:


> 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 (Dec 9, 2011)

Ellie Jones said:


> 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)..
> 
> ...



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 (Dec 9, 2011)

pottersusan said:


> 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 (Dec 9, 2011)

Northerner said:


> 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.


----------



## pottersusan (Dec 9, 2011)

Northerner said:


> 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:
> 
> ...



Really useful site - Thanks for that


----------



## Newtothis (Dec 9, 2011)

Hi Pottersusan, welcome to the forum.. Amanda x


----------



## martindt1606 (Dec 14, 2011)

*also without pancreas*

Hi Sue,

I had my Pancreas removed 18 months ago but apart from the gall bladder everything else was left with me.

I've had 16 months of trial and error and have seen multiple Diabetic Nurses (never the same one twice...).  

I was invited on a DAPHNE Course 6 weeks ago and now have some theory to help understand the relationship between food (specifically carbs) and insulin.  My daily bloods haven't improved but at least I know why.  I was told not to mention my lack of a pancreas on the course - as we are different.

On the course I met a Dietician who I've now seen a couple of times because the Pancreas does more than manage insulin.  For example I need to take Creon with everything I eat and drink - but again never understood the dose should be varied depending on food (fat content).

The next step with the consultant is to look at how the body identifies and reacts to hypos as it may be that due to the lack of pancreas the liver doesn't kick in as it should (or at all)...

The Diabetic professionals are all excellent with the management of the insulin regime - unfortunately I haven't found one that knows what impact not having a pancreas at all has on other things.

More than happy to discuss further any non typical Type 1 issues or the trials of the last 18 months by private message or e-mail if you wish


----------



## pottersusan (Dec 14, 2011)

I spent 45 mins with the consultant today (created a good queue!). He is obviously an expert in 'ordinary' diabetes (I don't mean to devalue the diabetes that so many people have) but is thrown by my somewhat 'flaky' diabetes. Certainly it is very different when you have no pancreas. 

I think I am the Creon queen - I'm eating around 12 times a day and taking 3 x 40,000 with each 'meal'. If I take less I have the most appalling flatulence - my duvet hovers above my bed like a magic carpet!  I also live on Immodium to stop 'dumping' syndrome (which is stomachless problem).

I will have to work out how to do private emails so we can talk about issues particular to us pancreasless folk.

I think I'll have to contact my surgeon before my next appointment and see if he knows of a diabetic consultant who has the relevant experience.


----------



## Northerner (Dec 14, 2011)

pottersusan said:


> I spent 45 mins with the consultant today (created a good queue!). He is obviously an expert in 'ordinary' diabetes (I don't mean to devalue the diabetes that so many people have) but is thrown by my somewhat 'flaky' diabetes. Certainly it is very different when you have no pancreas.
> 
> I think I am the Creon queen - I'm eating around 12 times a day and taking 3 x 40,000 with each 'meal'. If I take less I have the most appalling flatulence - my duvet hovers above my bed like a magic carpet!  I also live on Immodium to stop 'dumping' syndrome (which is stomachless problem).
> 
> ...



Hi Susan, if you can it is useful to discuss things in the public forum as this can help others in a similar situation now and in the future, but you can private message another member by clicking on their profile and selecting send a private message to xxxx  Any problems, please let me know


----------



## pottersusan (Dec 15, 2011)

I think it's interesting that you were told you're 'different'! At least someone knows we exist...

My problem is exacerbated by not having a stomach and eating very frequently. It's bizarre - being a diabetic I shouldn't have too much sugar, but need sugar to keep up my calorie intake. I shouldn't have too much fat 'cos the body is finding fat hard to digest, but need fat to keep up my calorie intake!

No one has talked to me about carbs. 

Trial and  error - mostly error at the moment, but am contacting the surgeon who cut me up for advice re a diabetic consultant who has experience of people in our situation.

Incidentally I'd kill for a salad - I've been told not to waste my time with fruit and veg as they are not sufficiently calorie dense for me. Why do you always want what you can't have

Will get the book and start trying to understand it better and find out about DAFNE

Thanks
Susan


----------



## Tina63 (Dec 16, 2011)

Just a thought on the salad front, why not plaster it in a thick creamy salad dressing?  Heaps of meat/prawns/fish then a good thick sauce.  Could that work for you?  You sound amazingly bright and positive, what a wonderful inspiration you are.  Good luck with everything.


----------

