Omnipod - my horrible experience

Diabetes Technology Insulin Pumps
1

Hi everyone!
I am 19, currently in college. I was diagnosed at age 8, and went on and off the medtronic minimed pump. Ever since Nick Jonas (Whom I was absolutely in love with) got the Omnipod pump, I investigated and decided I wanted to try it out! I needed something different; a change perhaps. My insurance company held to a strong no on covering this pump until this past April.

I finally was trained and all set up on it at the beginning of this past May. At first I LOVED it. I really liked the fact that I could place the pod on my arm where I don't have scar tissue from past sites. It was awesome! Until the first problem arose.

I started noticing that the pod was leaking insulin while it was on my skin and fully activated. We determined that the cannula WAS always still intact and there was never an occlusion to make it leak. This would happen maybe once a week or once every other week. It started this past summer, June or July - ish. Talking with our local rep, we thought maybe my body was rejecting the insulin because of a reaction I was having to the adhesive tape - causing me to itch to the point that I'd break skin. I started using All-Kare adhesive barrier wipes. This helped 99% with the itching - and it helped the adhesive stick the full 3 days. But this did not help the insulin leaking.

The problem resolved for a while, so I was relieved, thinking that I was out of the woods. Soon the insulin leaking started up again. Once again, I would first notice the top part of the pod was wet. I'd smell it and then I'd know that for sure it was insulin. I sent pictures of this to my local rep and she forwarded them to her other reps and nobody had any answer to give me. No one had seen it happen before! I started wearing the pods on my thighs, where I had fresh skin. This helped a bit, and made the leaking occur farther apart, but it didn't stop it. There was a period of time in October or November where I was changing my pod every day, when they are supposed to last 3 days.

Now, the tricky part about this is that once you fill a pod with insulin (200 units) - it is in there for good. I have been told from my rep that technically you can retract this insulin if you have a pod go bad, but you really are not supposed to. I have HAD to take the insulin out of each pod because I cannot afford to lose 100-200 units of insulin multiple times a week. It's insane!

I did speak to product support a few days ago and talked to them about this problem (like I have hundreds of times) and the woman I spoke with suggested that maybe the pod is getting bumped around, and the needle tip that stays at the end of the cannula (to push the tubing back in if it gets pulled out) is poking a tiny, tiny hole in the cannula which is causing the leaking. I am going to order a "Bands 4 life" and see if that helps. Right now I am wearing coban around the pod. WHo knows.

The other problem with omnipod that I have encountered is pod alarms. A pod alarm is a high pitch, obnoxious screeching noise that happens when there is an internal issue with the pod. You are forced to discard the pod and put a new one on. (this also happens if it detects an occlusion in the tubing - which is really helpful actually). Talking to other people who have the omnipod, they say they have only had 2-5 pod alarms total. I have had EIGHT pod alarms since december 26. I know this because after each pod alarm, you are supposed to call product support and they will replace the pod for you. They say I am doing nothing wrong and that I did not get a bad batch of pods.

I am at my wits end right now. I have been breaking down crying because I don't know what else to do. I go to class everyday in fear that my pod will start alarming in the middle of a lecture or an exam. I have to carry multiple pods with me because who knows how many I will need to replace. The amount of insulin that I have lost makes me cringe just thinking about it.

The praise I have for omnipod is the fact that you can wear it pretty much anywhere. The other wonderful thing is the customer service. I have not had one bad experience while talking with anyone on customer service. I call in every time I have a pod leak or an alarm and they always replace it hassle free, and send it over night. Also I have never had to wait to speak to someone, I'm always put right through. I am working with Insulet to see if they will replace the insulin I've lost, which may take a while. Other people love the omnipod, they haven't had the issues that I am having. But at this point I'd give anything for $10,000 to get a different pump.

2

I am so sorry for all the problems you've been having. I can understand your concerns because although I am much older than you, I've "been there - done that". I finally got really tired of dealing with pods that didn't perform well and went to MM Revel 723 pump. What are the chances of your insurance approving a tubed pump for you, if that is what you want? Could you possibly get your doctor or your Endo to contact the insurance company on your behalf.

Best wishes to you.

3

Sounds like a massive headache. Is it possible to load less insulin into the pod to reduce the amount you risk losing if you have to change it?? I have had zero success dragging insulin back out.

I feel for you, I really do. I'm sure I'd be at my wit's end by now, also.

4

I think Nick Jonas switched to the Minimed pump. To be honest, all the reasons you mention are reasons why I stayed away from the Omnipod. Not long ago I was talking with someone else who has an Omnipod, and she made the same complaint regarding the pods beeping the minute they need to be changed. Personally, I've found the Minimed Revel to be a really solid, reliable, and hassle-free pump. I think folks feel similar about Animas.

You may have options, though. If the Omnipod isn't working for you, you may be able to get a refund or at least justification from your physician to switch to a new pump. Repeated insulin delivery failures are serious business and if it can't be solved, you need to either go back to MDI or switch pumps.

It seems reasonable that not every pump will work for every person. I'd highly recommend talking to your endo and seeing what can be done. No pump is issue free, but you might have more luck with one of the tubed pumps.

5

I am so sorry you are having a tough time with the Omnipod. I really do feel for you, as I was there once before. I was on the Omnipod for about 3 1/2 months (November 2008-mid February 09), and had to discontinue use for very similar reasons.

Not only was I having pod failures, but my PDA was also failing. The largest problem I had was with static. Apparently, the cold air and colorado made for a perfect 'static' condition. I constantly got alarms due to that. I tried wrapping the PDA in static sheets etc. etc. Nothing helped.

I, too, feared the obnoxious Pod alarms...in fact, I had one Pod that wouldn't quit. I finally had to take it out and smash it....another found its way into the garbage can, and you could hear it going off for hours.

Anyway, I was able to get onto the MM522, and was SO MUCH happier with that pump. I know a lot of people are afraid of the idea of a 'tubed' pump. However, it was a welcomed relief.

I also know of plenty of people who had good luck, and LOVE the Omnipod. Unfortunately, it just wasn't right for me, either.

6

i am allergic to my MM sets adhesive too, I tried the wipes but they only helped a little. I also have insulin leakage because of the inflammation. Also absorption was a problem for the same reasons, My cannulas would slip out of the hole when the site got irritated.

Finally some one on Tudiabetes suggested I try an IV 3000, It worked but I added some neosporin too and I have not had any trouble since.

Here is what I do :

I clean the area with alcohol.
Then I put a small dot of neosporin in the center,
Then I cover it with a Iv 3000 barrier.
The neosporin spreads out a bit and makes a good target about half the size of a dime.
I use manual silhouetttes so I can easily hit the right spot, but you should be able to manage with the pods the same way.

Then I poke through that spot on the Iv3000 through the neosporin and into my skin.
Then I stick it down to the Iv3000.

This way the adhesive never touches my skin, The neosporin prevents infection and also prevents inflammation,

When I take my sets out I can barely see any mark at all.
In the past year I have had no infections and no irritation at all.

And I nearly just gave up on pumping all together,

It is worth a try and the Iv300o makes a better seal too for leakage.

My insurance covers the Iv3000. You might want to check if yours does.

7

p>Your story is as familiar to me as if it were mine. I just got tired of calling and replacing pods. T1 Diabetes is so hard and this just makes it worse. I am looking into replacing my Omnipod with another pump asap. At the moment I am on MDI and wearing my pod for just boluses. I have some pods I want to try and use until I get a new pump. I don't know if this will work on not. It might leak the same or I might have to take extra insulin from a pen. I have gone into DKA several times. So two shots of Lantus will keep me from doing that. I wish OmniPod would make different cannulas or metal needles available for us. But of course that would cut into their profit margins. I am as frustrated as you or maybe a little more. Insulet this is ours lives you are messing with!!!!!!!!!