Omnipod made diabetes a larger part of my life

Insulet's goal to "make diabetes a smaller part of your life" is an admirable value. Yesterday I decided, after giving the Omnipod a five month trial, that Omnipod was making diabetes a larger part of my life!

I have been having trouble with pod-change highs and this community has given me lots of advice on how to deal with them. Thank you for that. I think I found an effective workaround using a 7 unit syringe bolus at the time of the pod change. That seemed like a drastic amount compared to many others here but it worked for me.

I also experienced problems with unilateral pod deactivations and occlusions. It was an occlusion early yesterday morning that made me decide to finally give up on the Omnipod.

The night before I went to bed with normal blood glucose but was awakened in the middle of the night with a 180 alarm. I took a correction dose via the pod and went back to sleep. When I rolled out of bed in the morning the pod sounded a continuous screech. I quickly checked the PDM and discovered an occlusion report.

My CGM showed that I was over 200 for the last eight hours. In years past I survived these situations with few symptoms other than the usual grogginess and the more general "blah" feelings.

Now, however, my gastroparesis rears its ugly head. I'll save you the impolite details but I doesn't take much imagination to understand the nature of my distress. It was no way to celebrate Thanksgiving Day!

I pulled the final occluded pod off of me and hooked up my old Animas Ping, out of service since last July. It took me until noon to get my BGs back into the normal range; I spent over 12 hours above 200. Yesterday's occlusion was the final straw for me. I gave the Omnipod plenty of time to prove its merits. For me, at least, it failed. While my experience with tubed pumps also included occasional absorption problems, the Omnipod was giving me these problems a couple times every week. I was adding hours and hours of unnecessary hyperglycemia.

I understand that the Omnipod system works well for many here. I think that's great! When I started on the Omnipod last July, however, I was well aware that a significant slice of attempted Omnipod therapy adoptions failed. I read about them here and elsewhere.

The system, however, intrigued me. It's use of wireless technology and elimination of tubing attracted me to try the system. Access to new sites also motivated me. Insulet offered to sell me the PDM for $200 and bypass my insurance. That allowed me to try the system without having to make a four year commitment. I am now especially grateful for that. I am still eligible to buy a replacement for my four year old Animas Ping and my insurance will cover it.

I read many idiosyncratic reports about not wearing the pods cannula down, problems on certain body locations. It seems everyone had their own personal list of do's and don'ts that sometimes seemed capricious and superstitious.

I made many calls to customer service, sometimes for my personal education, to learn how to effectively use this device. The customer service was very good about replacing pods when one of them failed. The thing that I could not understand was Insulet's deliberate decision to keep me in the dark as to the actual meaning of the alarm codes that they wanted me to read to them. I'm very much a hands-on technical "under the hood" kind of guy. I want to know how something works and why!

I filled out an Insulet online survey recently and I wrote a few sentences in the box supplied for general comments. I gave some details about my pod change hyperglycemia. The form asked if I wanted to be contacted by Insulet and I responded "yes" and filled in my email address. I never did get a response to that.

I know, I know, I know. We all go to great lengths acknowledging that each of our diabetes varies. But my experience with the Omnipod is congruent with many before me. Omnipod suffers from some significant (and yet to identified/recognized) design flaws that Insulet doesn't seem to want to talk about. (What's up with those large size air bubbles that I found in several of my discarded pods??!) I just wanted to go on the record here so that future Omnipod prospects will see the challenges that one person experienced. And maybe my experience will influence, in a positive way, the future development of this patch pump.

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I am sorry you have had so much trouble. I've been wearing this system(Omni pod) for 3 1/2 years. I can count on one hand the issues I've had. This is also the only pump I've ever had. Good luck ....

I’m sorry you had so much trouble :frowning: but since you have posted in to warn people of issues, I hope people will also know that your experience is not EVERY experience. I have been using Omni for a while now with not one hyperglycemia incident. I can count on one hand actual “issues” I’ve had. Omni made diabetes take a backseat in my life and I love it. If I were on a tubed pump I don’t think I could say that :slight_smile:

The highs after a pod change are indeed frustrating. But I also had those when I was on the MM and had to change the infusion set. Now, I just try to bolus a bunch before I put on a new pod, and then an extra few units when the new pod is in place and depending on the time of day/night, I can sometimes make it work. Every system is going to have it’s flaws and everyone will be different in how they deal with it. Whatever device you choose, I hope it works well.

Keep in mind Diabetes is more than just your pump. It's your lifestyle, your habits and your full attention to detail. Personnally, I don't see any of the "flaws" you see, so be sure you are on the up and up with your own control before giving it out on the devices you use as one small part of the full control picture.

I agree totally all a pump gives me is more accurate dosing and ease of use. MDI gave me good control as well, it was just less acurate dosing. In the grand scheme of diabetes the delivery method is far less important than the care and attention we give to our disease.

Contrasting your experience with mine remains a mystery to me. I thought that I could work through the difficulties that I had and figure out how to get beyond the initial problems. That’s why I gave it a good long 5 month trial. I hoped/believed that I could work my way toward a relatively error free situation. But that’s not to be. Thank you for your comment!

Alison - I’m happy to hear that you’ve experienced no pod caused hyperglycemia. The experience of people like you motivated me to see if I could make this thing work! I can no longer jeopardize my health to figure this out. I’m glad your pump works well for you.

I made an effort in this post to communicate that this is my experience as well as a significant slice of those that try the OmniPod. My observations are merely anecdotal and do not represent everyone’s experience. Thanks for your reply.

Consistent absorption remains a challenge for every long term pumper, no matter which pump is employed. I realize that most difficult problems are often solved, in the end, with an array of solutions, not one “magic bullet.” I can’t afford to stick with this system and figure out how to make it work for me. I’m glad your pod’s are working well for you. Good luck!

Scott - This year I have gone back to “diabetes boot camp.” I hired Gary Scheiner for three months and kept a detailed daily log of all BGs, insulin, food carbs, exercise, and any other pertinent remarks like pod changes. I basically took my diabetes management on as a full-time job.

This attention to detail combined with a switch to a low carb diet has helped me lose a lot of my body weight, improve my A1c, drop my blood pressure, and drastically cut my total daily dose of insulin.

I realize that the game we all play, controlling our blood sugar, is influenced by many factors and is complicated and dynamic. I’ve been at this a long time.

I also know that sometimes our tools get in the way. In this case, I’ve concluded, that the OmniPod was causing more problems than it solved. I did not come to this conclusion hastily (it took five months) or without considered study and deliberation.

I’ve resisted making sweeping generalizations based on my n=1 experience. I trust that your favorable experience does not undermine your understanding that others may, through no fault of their own, endure a less than favorable experience.

I don’t begrudge your success, in fact I think it’s great. I’ve simply arrived at a conclusion different from yours. Neither experience invalidates the other.

Good luck to you.

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Hi Terry, sorry that the OmniPod did not work for you. I am however super happy that you do have a pump that works well for you.

I have been using omnipod for about a month and it is still touch and go, I have seen some of the complaints people have first hand, and understand their fustrations. for me the pros still out weigh the cons.

In the end, it only matters that you are healthy! and I do appreciate your post. and how you did point out that it did not work for you, not everybody.

Good luck!

meh - Thank you for your encouragement. The OmniPod appears to enjoy many satisfied users. I hope that your experience will follow the happier path to good control.

I’ve used insulin pumps for 25 years and am well aware of their capability to deliver precise and customized insulin doses. When they perform poorly, it makes a difficult job impossible.

I wish you the best.

I completely relate to absolutely everything that you reported about your experience. We even started the Omnipod at the same time. I can't tell you how much I appreciate you documenting your experience as it really validated everything I have dealt with. I would also add that I am an experienced pumper (18 years) and T1D for 42 years. We both seem to have serious gastroparesis complications, too! In addition to what you have noted, I have had trouble with pain at the site. There is a poking from the cannula and also an overall pain from the pod pressing on whatever it is up against. I have changed many pods because of it. I don't know if it is due to neuropathy pain sensitivity or what but it's very uncomfortable.

I am still using it as of now but will stop soon.

Thank you, again, Terry

jattzl - I'm sorry to read that the Omnipod is not working well for you either. Pain from the cannula poking and the pressing of the pod against your skin sounds like it could be neuropathy; whatever the name, it certainly sounds irritating!

Letting each other know that we are not alone is a major benefit of TuDiabetes. I'm glad my account helped you. I don't write these kinds of things just to bellyache. I try to frame things in such a way as to effect positive change.

If you stop the Omnipod, what method will you use to deliver insulin? I often wonder if I could go back to MDI. When I last did that, there were no rapid acting insulins and no Lantus or Levemir basal insulin.

Thank you for your kind response.

Your positive intention is what came across. Very well done.

I used the Medtronic Paradigm with Quick-Sets. Like you, after so many years, I was having absorption problems and hoped the Omnipod would help with some new sites, which I think it did. I am eligible for an upgrade and will probably go back to Medtronic but have not researched it yet.

There have been a few times in the past when I decided to take a "vacation" from being tied to the pump and used Lantus with Humalog. It was a nice break and blood sugars were pretty stable. The "vacation" only lasted for 2 days though :) That's all it took to remember all of the great benefits of using a pump. I am very insulin sensitive and obviously there is no way to inject .05 of a unit accurately let alone doing the math lol.

Thanks again. Nothing better than the peer support and information we get from sites like this.

All the best,

I think it would be interesting to know from people with bad omnipod experiences which kind of set works now for them using a tubed pump.
I think much of the problems of omnipod come from its fixed sized cannula (9mm diagonal).
If on a tubed pump you have good control only using longer sets, or deeper than 6 mm vertical sets, I can understand why pod doesn't work for you.
In particular I cite Jattzl

I used the Medtronic Paradigm with Quick-Sets. Like you, after so many years, I was having absorption problems and hoped the Omnipod would help with some new sites, which I think it did.
What do you think about this guess ?

garidan - I think you may be right about the style and length of the infusion set playing a key role. In fact, with my decision to drop the Omnipod, I've been researching a new infusion set for me. I have been using the Inset 30 with my Animas Ping pump. That set is angled and its cannula is 13 mm long.

Perhaps the shorter cannula length of the Omnipod is at the bottom of all the problems that I and others have.

I did have absorption anomalies from time to time with the Inset 30/Animas combo but their frequency was much less than the Omnipod.

I will next try the Contact Detach infusion set. It's a 90 degree steel cannula and comes in 6 mm and 8 mm cannula lengths. I will choose the 8 mm. Now I'm wondering about the actual insulin delivery depth comparison of the Inset 30 versus the 8 mm Contact Detach 90 degree set. I'll probably just try it and see how I do.

One thing I should note. I had problems using the back of my arms with the Omnipod. This is tissue that I never used before for insulin infusion. I'm not sure what to make of that.

Your cannula length hypothesis may be the right path for me to take. I intend to experiment using it.

Thank you for your comment.

This post could not have come at a better time! When I started Omnipod in September I decided to give it a 6 month trial run. After nearly 3 months I am debating on ending it sooner.

I too am greatly frustrated with the over 200 post pod change highs that can take over 6 hours to treat. My current system of prevention/treatment for this works well sometimes (numbers stay under 140 through the change only to rise above 250 12 hours later) and other times-even though I change nothing about my routine-it doesn't. I've also begun to experience insulin absorption issues after 48 hours no matter what site I use. Over the 72 hour life span of a pod I probably have 1/3 of that time spent in control-the rest of the time I am fighting to lower my BS. I did not have these issues with my Medtronic pump. I knew once I changed my infusion set with Medtronic that I could enjoy 3 days of great control. I originally switched to Omnipod because I was running out of sites to use after 11 years and, when I did encounter problems with my pump, it was typically due to tubing.

Like you Terry I decided 6 months ago to eliminate other variables to make my diabetes management easier (adopted low carb approach, kept food diary, etc.). Because I made these changes (and feel confident it is a lifestyle I can continue willingly) I am seriously considering returning to MDI. The last time I was on MDI-2000-I used Humulin/Humalog. I too wonder if I will be more responsive to newer long acting insulins combined with Novolog or Apidra. After almost 12 years on a pump I am worried how my body will respond to the switch but I know that another pump will not eliminate the issues I have with absorption.

Again-thank you for posting. It is comforting knowing I am not the only one experiencing these issues!

Whew! That was quite a post! I AGREE 100% and then some!

Just two days ago I was doing a pod change, 1st try) POd had a plastic block over where one injects to fill the pod with insulin (third one in this box of pods!), so I just placed it in my basket 'o bad pods to call in to insulet (usually about 3-4 in there already) ..... 2nd try) PDM signaled "defective pod' during the priming process...just threw it in the basket with the others. 3rd try) didnt hear the double beep after filling with insulin, my directions from my Insulet trainer was if "you dont hear the double beep, dont proceed. We wont be held resposible for anything else that goes wrong and we dont accept responsibility if you hadnt heard the beep-" so into the basket it goes. Summary, took about an hour to change my pod that day, and I had three pods to call in as defective....WOW! This CERTAINLY is NOT making Type 1 a smaller part of MY life!

tebbemae - I'm sorry that the OmniPod could not deliver good performance for you. There is a large group that it seems to work well with.

If you had good control with MDI then maybe that would be a good choice for you. When I look at my basal profile, especially in the early morning hours, I fear that there's no background insulin that could deliver that. I would definitely have to split my Lantus or Levemir doses into two, maybe three per day. I've never used Lantus or Levemir so I'd have to do detailed logging to discover what works for me. I'd probably look for a day-by-day email assist from a CDE too.

One problem that I'd anticipate with changing to MDI is remembering if I took my dose or not! I just know this would be an ongoing challenge. I often check my pump to verify what the heck I did on the last dose! Double dosing or missing a dose both have disastrous consequences for control.

If you had good luck on the Medtronic pump, why don't you consider just going back to that?

You mention running out of sites. I have the same challenge. One of the reasons I tried the OmniPod was to use new sites. Well, I had such mixed results with using the back of my arms, I was discouraged to try other places. I need to experiment with alternate sites (other than abdomen) but I will wait until I can change to a steel cannula (Contact Detach) after the first of the year.

What was your problem with pump tubing? Was it just a nuisance and getting caught on doorknobs or was it something else?

Good luck with whatever you do. I will be interested to know what you choose and how it works out.