A learning curve

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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:

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! 🙂
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Really useful site - Thanks for that
 
Hi Pottersusan, welcome to the forum.. Amanda x 🙂
 
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
 
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.
 
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).

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.
Click to expand...

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 🙂
 
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:confused:

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

Thanks
Susan
 
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.
 
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