Advice, suggestions and input

[trophywench]

@bkit - Dexcom or Libre 3 ?

 

[bkit]

@bkit - Dexcom or Libre 3 ?

Dexcom g6 (with the loop) though I have used the libre 3 separately in the past, before the Omnipod.

Actually Libre 1 - 3 over the years.

 

[PhoebeC]

Sorry you are having a rough time @bkit. Keep your chin up.

So you are on the omnipod 5, and the Dexcom g6?
Do you know how to do basal and bolus testing?
If you eat no carbs do you stay level?

As others have said, use the blood testing for lows, and try pens for food, spilt out the dose.

 

[bkit]

Sorry you are having a rough time @bkit. Keep your chin up.

So you are on the omnipod 5, and the Dexcom g6?
Do you know how to do basal and bolus testing?
If you eat no carbs do you stay level?

As others have said, use the blood testing for lows, and try pens for food, spilt out the dose.

Overnight my BG is fine (assuming it's not one of the few bizarre nights where it just starts dropping when I head up to bed!) although the pod is part of the loop at the moment, so it's always changing up the basal, if you will. One of the big benefits of the pod has been pretty much the eradication of night hypos, which I used to get a lot of, and generally a straight horizontal line at a reasonable BG level.

 

[bkit]

Not much of an update in any official way, but as viable sites for the Omnipod continue to dwindle (from the weight loss I'm pretty sure) I'm leaning more and more toward the pens for treatment again.

I've managed to stall the weight loss at a little below 2 stone down, it hasn't dropped anymore in about a month, simply by... Eating worse stuff lol and more of it, where I can.
I've been trying to speak with my consultant, but it's not going well. Not been able to since June last year, and the nurse go between have told me that it's all pretty much too complicated for them and I need to talk with him.
I wanted to before changing up the entire treatment, but alas... I don't think I can wait this indefinite amount of time (so much for every 6 months!)

The pod, if nothing else, has helped show me where the problem areas are (pretty much everywhere!) and I'll attempt to limit the injections to the better locations, few as they are.

I realise the original issue of large drops from minor movement/activity hasn't been solved and still needs addressing, but as things currently stand, the Omnipod, along with the sensor issues also brought on by scar tissue/lipo issues is unsustainable, very limiting and I need some control back in my life. It's miserable going nowhere, doing nothing & eating little and limited to reduce risk.

I have no upcoming appointments, or really any word from my care team, and because of this I have very much appreciated all your input and advice.

I'm not sure exactly when, but I will attempt to switch back to pen therapy exclusively, and watch the transition carefully.

I guess part of me just wanted to actually put this down, more as a reassurance to myself, that I was actually going to do it, than anything else.

Wish I had more positive news to share!

 

[Inka]

If you want to go back to pens, do it @bkit Sometimes it’s what we need. I once took a long pump break of 8+ months. When you do go back to injections, you can still try splitting your bolus, eg if you’re going to have 4 units,you can split that between two different sites and/or delay 2 of the units (or whatever). You’ll find this gives you confidence - which is priceless.

 

[bkit]

If you want to go back to pens, do it @bkit Sometimes it’s what we need. I once took a long pump break of 8+ months. When you do go back to injections, you can still try splitting your bolus, eg if you’re going to have 4 units,you can split that between two different sites and/or delay 2 of the units (or whatever). You’ll find this gives you confidence - which is priceless.

Thanks,
I was intending on bringing the split bolus with me back to the pens.
The Pod was given to me before we even knew about the lipo issues, and has, as stated, at least highlighted them and where they are. I'm hoping that, that knowledge and the split bolus, along with the ability to just ignore the sensors data (the lipo issues can randomly cause really wild sensor reading, which when connected to the Pod, get acted upon immediately by the Pod, before it was a loop I'd often look at mad readings and just wait for it to settle back down), I'm hoping all this will help me at least live more reasonably.
Oh! I also miss having only 1 thing to watch out for, stuck to me, complicating my ability to sleep comfortably lol

 

[everydayupsanddowns]

Sorry to hear you’ve been having such a tough time. You aren’t alone though. I know several people who had to abandon pump therapy because of site issues. It seems to be the weak link in the chain. Another person I know had something surgically implanted that needed changing every few years (again because of site issues / unavailability / unreliability) , though I can’t remember what on earth that was called now! Some sort of ‘port’ thing.

At the end of the day, we just have to work out what bits of kit and in what combinations are going to be the least frustrating, most effective and reliable for us as individuals I guess? And that can change from time to time, and stage to stage.

Hope you get on well with your transition back to pens. Make sure you get half unit ones, and perhaps look for a bolus calculator app to do the sums so that you can keep flexible ratios etc?

 

[Inka]

DiaPort @everydayupsanddowns ? That’s the only one I know. Continuous intraperitoneal insulin infusion (CIPII), where the insulin is infused into the abdominal area.

 

[everydayupsanddowns]

DiaPort @everydayupsanddowns ? That’s the only one I know. Continuous intraperitoneal insulin infusion (CIPII), where the insulin is infused into the abdominal area.

YES! Thanks Inka. I was struggling to remember the intra-peritoneal for some reason 🙄

The only thing I could think of was the iPort Medtronic device which is basically an infusion site you inject into, and I knew it wasn’t that 🙂

 

[Tdm]

Disclimer- i don't havs a pump

But i do have have massive drops when i excercise with active novorapid. I am in mdi.
I don't think this is particularly usually as other people don't seem to get it.
With me, this is nothing to do with lipo/ absorbtion as its happened since diagnosis before any such damage could have happened
It is due to novorapid/rapid acting insulin. It doesn't happen when thats out of my system.
As you are on a pod, you are on novo all the time.

I deal with it by either stopping the excercise, or eating sweets some 15min BEFORE the drop kicks in - with this i can usually walk for as long as i want without dropping. Not always, but normally it works out.
I use it to deal with spikes.

With a pod wouldn't you be able to suspend your basal/ease off/use 'activity' function a while before the activity? The drop with activity issue is why these settings exist

As for getting the pump to use undamaged areas, wouldnt a tethered pump be more flexible for this?
Also, haven't read whole thread in detail so my appologies if these suggestions already tried etc

 

[helli]

But i do have have massive drops when i excercise with active novorapid. I am in mdi.
I don't think this is particularly usually as other people don't seem to get it.

This is why it is not recommended to exercise when you have IOB (bolus insulin on board).
The way to deal with it is to try to avoid it happening by not eating anything that needs a bolus from 4 hours before exercising or, of you need to, reduce your bolus dose.
As someone who is very active, I am surprised your diabetes clinic have not explained this to you.

With a pod wouldn't you be able to suspend your basal/ease off/use 'activity' function a while before the activity? The drop with activity issue is why these settings exist

I wish it was as simple as that but...
We use the same fast acting insulin in a pump as you use for MDI bolus. This is active for 4 hours. Therefore, we need to make changes to our basal hours before we start exercising and I don't always know if I am going to be able to get away from work for my spin class, get stuck in traffic on the way to climbing, etc hours beforehand.

 

[Tdm]

If i never excercised with bolus on board i would have no life. I excercise when i want, not when my insulin tells me i should.
I'm not letting my diabetes control me to that extent, no siree!
As for listening to my diabetes team, with an a1c of 39 they don't presume i need any more info

 

[bkit]

Sorry to hear you’ve been having such a tough time. You aren’t alone though. I know several people who had to abandon pump therapy because of site issues. It seems to be the weak link in the chain. Another person I know had something surgically implanted that needed changing every few years (again because of site issues / unavailability / unreliability) , though I can’t remember what on earth that was called now! Some sort of ‘port’ thing.

At the end of the day, we just have to work out what bits of kit and in what combinations are going to be the least frustrating, most effective and reliable for us as individuals I guess? And that can change from time to time, and stage to stage.

Hope you get on well with your transition back to pens. Make sure you get half unit ones, and perhaps look for a bolus calculator app to do the sums so that you can keep flexible ratios etc?

Thanks!
I've requested the Novo pen echo plus for it's 0.5u from my GP and looked up some separate bolus calculators. The MyLife™ app looks like it does the IOB calculations etc. Taking the better parts of the Omnipod experience with me back to pen therapy.

Does anyone know of any other bolus calc apps, or have any experience with one they'd recommend?

 

[everydayupsanddowns]

Does anyone know of any other bolus calc apps, or have any experience with one they'd recommend?

MySugr is another app that has been upgraded to provide bolus calculation. I used it as a logging app for years and liked it a lot.

 

[dannybgoode]

If i never excercised with bolus on board i would have no life. I excercise when i want, not when my insulin tells me i should.

I've started discussing training and exercise when my DSNs and they advised that if I can't wait until there's no active bolus on board then to adjust the dose to factor in the exercise.

At the moment I can fit my runs in round the 4 hour window however adjusting doses too factor in exercise loads is very much on my list of things to play with shortly

They suggested that as a starting point to halve the dose and see how that goes. Now I've got my CGM talking to my Garmin I feel more comfortable in playing around with such things.

 

[bkit]

I had my first appointment in quite a long time today.
I explained without their input, I'd started using my pen for boluses, and kept the pod as basal/background/mini corrections.
I wasn't sure how they'd take it, but they basically said they don't know how to help, and they support any choices I make, as they believe them to be well thought out.

The boluses via pen injection seem more stable than bolus via the pod itself. Or at least I seem to have less issues with absorption - more precise placement of insulin, instant flood of insulin Vs slow drip feed, places the pod can't be placed - whatever the reason or mix of reasons it is seemingly helping.

The weight gain is still a struggle, and due to the weight loss, the pod has fewer options for viable placement.
I'm sort of down to just the back of my arms, and instead of trying to fit 3 different pods and the sensor itself there over the sensors 10days, I've started to plan a mix of 3days of pod 4days of basal pen insulin, then 3days of a pod again to finish the 10days of g6 sensor.

My care team agreed to it as a plan, but didn't like the idea of me switching back to Levimir insulin. I was concerned Tresiba would remain in my system for too long after switching back to the pod, but they wanted me to stay with it.
So I guess I'll see how that goes when I finally give it a try.

I wanted to thank everyone again for all the advice, suggestions through all of this It's been indispensable!

 

[Inka]

That sounds promising @bkit I hope you’ve found an answer that improves things.