Ready to quit pump use

[dowuchyalike]

After 3 years of pump usage, I'm seriously at the point of jacking it in and going back to MDIs. Over the years I've just had too many random and unexplained high blood sugars, sometimes following cartridge/infusion set changes, sometimes following cannula changes and sometimes for no obvious or apparent reason at all. I've always been super conscientious about sticking to good pump protocol and avoiding issues like air bubbles but alas these problems continue.

Most times these spikes are just too high to attribute to stress, illness or a miscalculated bolus and just leave me concluding that for whatever reason, there are times when the insulin just isn't get through to my bloodstream. I can't carry on exposing myself to the risks posed by blood sugars often in excess of 15mmol, so I just think it's time to go back to a regime that leaves me in no doubt that I'm getting both the necessary basal rates and boluses, even if it involves more discomfort and less flexibility.

 

[Beckyboo1]

I feel the same !! Have appointment in a few weeks hoping to go back on 4 injections a day . Sick of weight gain , high sugars , stomach shot to bits all lumpy and bumpy . I have times it doesn't seem like I am getting any insulin .

 

[donnellysdogs]

I think there are a few people inthe category of 'i want to quit'.

I know of at least 3 pump persons who are getting such random, frequent hi's too, that we just can't put down to our bodies..

I hate the thought of returning to mdi, but I do also believe that pumps, canulas, sets, airbubbles are contributing to bad highs and lo's....i know I can when priming my tube and connector with rapids d's .. I can tap the plastic connector whilst onend of the set and get horrendous amounts of air passing through the insulin.

Accuchek do not tell people to tap the connectors when priming to get rid of air on the rapid d's. That also means that after say a bath or shower that when the seta are still in you and you cant prime the bubbles out of these connectors at set end, that there has to be air still in them, and will end up in us say when we move or adust these sets.. Just from daily living

I do actually love the pump in some aspects... Ease of use, eating, working.... But I hate the fact that some manufacturers just keep making me feel as if I am the only person that lho es them up and comains. They make me feel then... That I am the only person in the world getting these problems.

So I guess I am teetering on the edge of returning to mdi.... But did I get better results on mdi.... NO... As lantus crucified me for night hypos...

 

[dowuchyalike]

The problem is that you get a high reading and initially you might just put it down to your own mismanagement or miscalculations, so you give yourself a correction bolus accordingly and test again 90 minutes later only to find that not only has your sugar level not come down, it's shot up even higher. At this stage, you have to conclude that it's your cannula or infusion set, so you opt to change one or the other but the damage is already done and you've gone maybe 3 or 4 hours without any basal insulin. This is just too hit and miss as far as I'm concerned and though my overall diabetic control might be slightly better with pump use, it doesn't justify the potential damage that those extreme spikes could be causing for the periods that I'm forced to endure them.

 

[donnellysdogs]

Agree on that. I just had two days of highs after 2 days of lowers.. Just put in new set in last 5 hours and corrections now working and nothing working for 2 days.. Thinking it me... But obv not...

Coping with the constant changes I hav had to do in last 3 months in particular is really quite wearisome....

 

[azure]

I too have found that sometimes a set/cannula doesn't 'take'. It's fairly rare that that happens, BUT a couple of years ago I had a real problem with highs. I was getting frustrated, exhausted and totally fed up. What sorted it for me was changing the part of my body where I put the sets. I had been using my tummy but swapped to my legs (upper legs, outer half, not too low). This completely solved the frequent highs for me.

Now when I get more highs than normal, I take that as a hint and I swap to another part of my body for a few months. I think this lets the part I'd been using previously recover from the insulin and means that when I return to it some months later the absorption is back to normal.

I don't know if this will help you, but I felt I had to mention it as I hadn't realised how suddenly absorption can decrease in a part of the body that had worked perfectly OK for ages.

In general, I change my sets in the morning to allow for testing and correcting if my blood sugars are out of whack; if I feel a cannula isn't working properly for whatever reason, I put a new one in; I also add a tiny bit 'extra' insulin in addition to that necessary to fill the cannula in my body as I find that a tiny amount like that can forestall any highs after set/cannula changes (I was told that highs after changes aren't uncommon). I also keep an insulin pen ready to go so if I'm struggling to bring down my blood sugar then I can at least bolus a corrective dose with that and know my blood sugar's coming down, then sort out any set problems.

But - to answer the original commenter - it's not you. Sadly, even if you do everything right regarding the pump sometimes your body will mess up. I hope you can sort it. I know how demoralising and depressing it is to go through a spell of high blood sugars. You have my sympathy.

I love my pump (even though it can sometimes be a nuisance!). When I got it I felt I'd got my life back. I just couldn't get on with any of the longer acting insulins and was having horrible night-time hypos. It was terrifying. But that doesn't mean everything's easy - it rarely is with diabetes, is it? :roll: How I miss my beta cells! *sigh*

The only other thing to try is different sets or different cannula lengths, I guess? I use two different lengths depending on where I'm putting it.

Anyway, I hope you get it sorted - best of luck to you.

 

[donnellysdogs]

For myself, i am rinning out of places to change sites to.
I currently use all stretch of bum and both legs, and they have absolutely nothing wrong to physically look at on the 'skin surface'. My stomach is a real, real problem to use... It bleeds or hurts or falls off due to sweating or the highs are phonemomenal.... This isnt for over using it... As I have so rarely been able to use it despite my attempts to keep trying it.

Jobwise I am a gardener, and very fit and muscky. My stomach is pure muscle, and sets have been so painful (then highs), bleed (then highs) or fall off (then highs!!) and when I bend over and they are in a bad place, boy do I know jt...That they are just impossible in my stomach.

I rotate constantly on areas I can use - both legs and every area of bum round to area that should have love handles.. Difficult to use side of hips as sets painful when lying down as they seem to hit bone..

Anybody have any other place to use? My arms too are very muscly and I also wear sensors on them.. And these can be painful sometimes when they slam into muscles.

 

[kt78]

After 3 years of pump usage, I'm seriously at the point of jacking it in and HIback to MDIs.

Hi there I think that you are tied to your current pump provider for 4 years (if you're funded by the NHS) after this time I think you are allowed to try another pump.

I use an Omnipod and I find it excellent. I have only used it for about 7 months now but I have never had any technical issues with it. I'm not sure if you're aware of them but they are a waterproof, tubeless device that primes itself and auto-inserts the cannula. They are available under NICE guidelines but not as commonly provided as other devices.

http://www.mylife-diabetescare.co.uk/mylife-omnipod.html

Just thought I would mention it :thumbup:

 

[jopar]

I've been pumping for almost 5 years now... Never really had problems...

Personally I think that Inserters are actually behind a lot of problems and set failures... I'm skinny as a rake so finding a fat layer is difficult... But because I self-insert (I use a Teflon Tenderlink angled 13mm set) I'm able to insert the cannula so that it doesn't become in contact with any underlying muscle and position it where underlying muscle movement won't dislodge it.. And in 5 years I've never suffered a kinked cannula or changed sets due to set failure..

So perhaps you need to look at what type, length of cannula and perhaps self-inserting might over-come your problems...

Another thing to try, is leave your old set in for several hours before removing it, some thing this prevents a spike after a set change, and if they have any problems with a new set that they've got a known good one to revert back to while they sort out the high caused before changing using a replacement set.

As to high's caused by bubbles in tubing, bubbles in the cartridge is almost impossible to avoid, as air bubbles are created and also adsorbed with temperature changes of the insulin.. I always wear my pump with the connector facing downwards, then if I get any air bubbles these will move to the end of the cartridge out of harms way and not go through the tubing..

If for any reason you BG's hit 14mmol/l or above then correct using an injection and not the pump, this can not only identify an adsorption issue with the infusion site or a miscalculation with a bolus... Because if it's a adsorption/site failure you will be able to correct but your levels will rise again, or perhaps not get the correction you expected. If it's a miscalculation then an injection correction should reduce the BG's and hold them steady..

 

[azure]

Sorry, donellysdogs. I don't know any other areas to use, but I did find that recently when I returned to my legs (ie thighs) I found that I could extend the area that I used further than I had before, which gave me more places to move my site to down each leg. I go from one leg to the other moving both across (from inner to outer) and down gradually. When I first used my legs I'd looked online and spoken to my GP and I'd got the idea that there was only a smallish area that you could use. This most recent time I extended that area by using more places ontop of my thigh (imagine sitting down and looking at the top of it) and also went slightly further down my thigh (ie towards my knee).

On my bum, I've had better results using the stripe above my knickers, kind of almost my low back. Sorry, I'm bad at describing, but the sites are definitely all above my pants line. I found that using a higher 'band' (ie closer to my lower back) gave better absorption. So maybe you could look at refining the areas you use? I'm very slim and don't have much fat anywhere so I struggle sometimes too. By far my best place is my thighs, but obviously I have to swap areas. My tummy is so slim that I don't use that very much as it leads to highs.

Oh, I don't know if you do this, but I always pinch up the flesh before inserting the needle/cannula. That helps avoid jabbing a muscle. I was advised to do that and I always have.

All I can suggest is extending/refining within the areas you use; pinching up; using different cannula lengths; and maybe adjusting your angle of insertion.

(Btw, I use Accuchek Tenderlink sets and either 13mm or 17mm cannulas)

 

[donnellysdogs]

Now using rapid d's 6 and 8mm. Fellow pumper I know also suggested tenderlinks, but I am literally petrified of these ones due to one reason..... I have never been able to bear having those things put in me in hospital when they put them in veins for drips.. The thought alone makes me want to puke....perhaps I will have to have a look at them.. Get over my fear...
Only trouble is now, we moved recently to a different area and my hospital havent got official funding from my new pct.. So they told me to stock up with 3 months minimum supply of sets.. So cant get any even if I could pluck up courage till they get funding sorted.. Which last time was mucked up and took ages.. And that was a normal funding to sort!!
I use my legs in all places.. 1/2 way down to my knees, inside and out, but recent times had loads of problems with hitting blood. Bum sites like suggested by yourself I go practically up to what I would count as fatty diminishing place below back waist level.

I am really actually quite pleased that someone else has difficulties with using their stomach.. As everyone ekse I know uses theirs in preference to places I use. So I feel odd that I cant manage to use mine.

Will see if I can find a way to pluck up courage for tenderlinks, seeing Dsn fri so will ask about way to get them because of funding issues..

Thnx..

 

[azure]

I've only ever used the Accuchek Tenderlinks as they were recommended for me when I first got my pump. I believe this was because I'm slim and wiry so those were thought to be best for me. I also said that I didn't want any set that entailed leaving a needle in my body - again because I'm slim and the thought made me cringe as I imagined them scraping muscles and the like. I also think that the angle of insertion was another reason why Tenderlinks were recommended for me. The pump trainer questioned me about what length needles I'd used on my insulin pen and then deduced that I'd be best with Tenderlinks as I didn't have much fat.

I use the 13mm ones in my legs and the 17mm ones in my bum. The tubing length I have is 60cm which I find very adaptable.

I'm not very brave about needles at all - I feel faint when I have my blood taken - but I manage the Tenderlink introducer needles OK. I think they look much scarier than they are. The trick is to pinch up, get the right angle, and push them in fairly swiftly and with a steady pressure. You can't over-push them as they have a natural stopping place, and anyway, you push them in at a speed at which you can clearly see when they're properly in. I'd far, far rather put one of them in than have a drip! I'd also add that it's much nicer putting them in your bum or legs than your tummy, so you have an advantage there (the tummy seems to sting more, I think). I find my legs pretty painless and my bum slightly more painful, but not that bad and not really any more painful than having an injection there.

Yes, hitting blood vessels is a nuisance. Sometimes I stare at my legs looking for a place to put my site and I swear there are blood vessels everywhere! I like to get in the right light and check for obvious blood vessels first so I can avoid them. I don't find it so much of a problem in my bum as there's more fat.

I'm glad to have found someone who doesn't use their tummy for sites too. Even the diabetes nurse looked at me strangely when I said I didn't use it now. I did read about a very slim child once who couldn't use his tummy either, so slimness/lack of fat does seem to be the issue (which is ironic really as we're always hearing about how we should be lean and fit).

Oh, just a thought - maybe you could get a few sample Tenderlinks to try for free? I don't know if that's possible but it might be worth asking. When I first got my pump, I was given a selection of them to try to see which lengths suited me best.

Anyway, I hope you find something that suits you very soon.

 

[dowuchyalike]

It's good to know that I'm not the only one frustrated by the unpredictability of the pump and the problems that arise out if it. Donellysdogs, I'm a bit like you really in that I don't have a whole lot of subcutaneous fat to take advantage of, however, I look for the fleshiest areas and always make sure I rotate them regularly, though this still doesn't seem to prevent problems. I've tried a variety of cannulas over the years and eventually settled on the Accuchek Flexlink 8mm but I'm not altogether convinced it's the best for me. I'm very active both in both work and private life and I'm often aware that the cannula gets pushed around quite a bit by body movement and tugged on by clothing through the course of an average day but save for changing it on a daily basis, I'm not sure what I can do to make sure that this doesn't lead to situations that prevent the insulin getting through.

kt78, you mentioned about the 4-year thing, I think that just refers to the life of the pump i.e. the period of time for which its effectiveness can be guaranteed. Since I had a fault with my original machine after 2 years and was sent a new one, I'm guessing that that 4-year period then went right back to the beginning, so that would mean I've actually got another 3 years with the current unit.

 

[paul_bangor_123]

Hello. Lot's of practical ideas here. Mostly good and worth a try. What I would also say though is don't be afraid to try a stint off the pump. I also stopped pumping for various reasons at one stage. Went back on MDI and stayed like that for 2 years actually. Again for various lifestyle and practical reasons I went back on the pump. Remember the pump is just another device for administering your medication. Granted there are differences in that pumps use only fast acting insulin and all that, but it really doesn't have to be a major decision which in itself can cause you stress and anxiety. Don't forget, like me you can "try" it and return to the pump with new vigour and hope in the future if that suits.

As regards some of your unexplained highs and lows. Yes, I sometimes experience that. For me it is usually down to the insulin "lumping" at the infusion site. Big highs. Then it seems to be followed by hypos as the insulin slowly gets absorbed. Medically that might be nonsense. It is only my experience and unprofessional deductions as to what might be going on. I can only take steps to avoid lumps. For me this means:

1) Change the complete set every 3 days
2) Use Sillohette set as it is angled and therefore I can set the depth myself and once inserted I find it extremely comfortable
3) Manually insert so I can sense how "clean" the insertion is before removing the steel needle bit
4) If there is any discomfort when I insert, I remove immediately and reinsert somewhere else
5) Bum works much better than tummy for me
6) If any redness, blood, itchiness or pain develops within the 3 days of usage I replace the entire set immediately

Hope that is of some help to you and I wish you well.

 

[Loopylainie]

Hi, to both of you ready to quit pump! It seems to me that the pump is not working properly and you may not be receiving insulin, this happens, 3 times in my case. The piston sounds like it is working but doesn't actually move. Check it by calling for insulin, without stopping pump and detached from your body. Watch the end to see if any insulin drips out,. You may need to do this a few times as the pump works intermittently. Good luck

 

[squeeze321]

I have been pumping insulin since May 2012 and at the start I had some issues with high sugars due to air bubbles, no matter what I could not get those pesky bubbles out of the reservoir and after an issue with DKA in sheer desperation, I decided to use a 0.5ml syringe to remove air bubbles during reservoir and set changes. It makes life a bit easier, has saved me from the ketone monster and has also saved my fingers from all that flicking!!

So for those of you who may be considering MDI due to issues with air bubbles etc., here’s some step by step instructions for removing bubbles when doing a set change.

1) Move the air bubble(s) to the top of the reservoir by violently attacking the reservoir with a pen or syringe. Watch you don’t knock the reservoir on the floor with your enthusiastic reservoir bashing as this may cause you to have an abscess, I have never had one yet honest!
2) Then with the reservoir in an upwards direction with rubber tip at the top, place the syringe needle into the reservoir so the syringe needle is upside down draw the air out, there may be a small amount of insulin in the syringe.
3) Check your reservoir for bubbles etc and you should not see any.
4) Then continue to prime your tubing with insulin then proceed with your set change.
5) Voila, new set, fresh insulin in new reservoir….happy diabetic!

 

[Trina]

Hi all. I'm a new pump user but indeed had an experience whereby huge highs one day and did exactly as stated and pumped some insulin with tubing detached until insulin dripped out. In my case I am now changing the cannula every two days and tubing every four days.

However despite the challenges I feel so much better on the pump and despite being diabetic for over 45 years am the most positive about this than I ever have.

Good luck

 

[kt78]

It's good to know that I'm not the only one frustrated by the unpredictability of the pump and the problems that arise out if it. Donellysdogs, I'm a bit like you really in that I don't have a whole lot of subcutaneous fat to take advantage of, however, I look for the fleshiest areas and always make sure I rotate them regularly, though this still doesn't seem to prevent problems. I've tried a variety of cannulas over the years and eventually settled on the Accuchek Flexlink 8mm but I'm not altogether convinced it's the best for me. I'm very active both in both work and private life and I'm often aware that the cannula gets pushed around quite a bit by body movement and tugged on by clothing through the course of an average day but save for changing it on a daily basis, I'm not sure what I can do to make sure that this doesn't lead to situations that prevent the insulin getting through.

kt78, you mentioned about the 4-year thing, I think that just refers to the life of the pump i.e. the period of time for which its effectiveness can be guaranteed. Since I had a fault with my original machine after 2 years and was sent a new one, I'm guessing that that 4-year period then went right back to the beginning, so that would mean I've actually got another 3 years with the current unit.

Hi there - tbh - I'm not entirely sure however I think I was told that the clinic supplying the pump were in a 4 year contract with the pump supplier. I don't think if your original was faulty and you were sent a replacement that would extend / rewind the contract. Worth asking your DSN though if you would like to try another product - have you looked into the Omnipod - it's been brilliant for me and I'm needle/IV phobic!?

 

[jackmarknow]

I feel the same !

 

[sanchia07]

Probably wrong thread to ask but how do you get considered for a pump?