After nearly three weeks on the OmniPod system, I am giving up. I know that’s not very long, but I had problems with literally every single pod I put on my body. After going through a long and detailed (good) training on it, he first two pods basically fell off. The third one stopped communicating with the control device. The fourth one worked more or less, but at the end of 72 hours, stopped working entirely, even though there is supposed to be an 8 hour grace period. The fifth pod, that I just put on yesterday, was not bringing my blood sugar down from the 170s today, despite not eating anything all day, and taking 11 units as bolus shots in addition to the basal deliveries. I tried the Tandem T:Slim Control IQ last year, and had lots of issues with infusion sites. I guess a pump just won’t work for me, which has me despairing again. I cannot seem to keep my morning high blood sugars under control no matter what I do. Pumps would be a great solution, if I had been able to find a way for them to work with my body. Really bummed. Back to MDA.
Did you try use an older OmniPod system with looping app? It may give you more flexibility to try control your BG levels.
Thanks for the suggestion. The problems I encountered were not related to the looped system of the OmniPod 5. Like my experience a year and a half ago with the Tandem t:slim system, this was the one advantage. I don’t mind sticking myself several times per day. I am able most of the time to manage my sugars pretty well with MDI. There is one problem I seem unable to solve: “Dawn Phenomena.” The entire time I have had diabetes the high sugars in the morning are not solvable with Lantus, Triseba or any other long-acting insulin. With the OmniPod, when the pods worked (for a little while), they helped with early morning high blood sugars. The problem really was the hardware. I went through 6-7 pods in the 2-3 weeks I was using the system and every single pod had some kind of issue, either with adhesive wearing out, not communicating with the control device or my Dexcom G6, leaking insulin, or absorption of insulin, or stopped working suddenly with error message to immediately replace pod. My average daily BG went up from about 132 to 150 during those three weeks, and it was not getting better after becoming familiar with proper placement, control, etc. I guess I am just not cut out for a pump system and will have to learn to continue to live with morning high sugar, although I know this is going to cause complications for me as I continue to age (59, have had diabetes for 26 years).
I am sorry to hear of your troubles with the pods. I understand your disappointment. I’ve had some of these very same problems with pods, and they coincidentally occurred right when I started using DIY Loop on iOS. I say coincidentally because I eventually was able to resolve them mostly through trial and error over the span of a few months. And, yes, like you, my issues were all related to the pod.
I encourage you to give yourself more time in resolving these issues. It sometimes takes a few pods just to resolve one issue. For example, even though I had already been using OmniPod for a few years with MDI, I suddenly had an absorption issue when I switched to Loop. These issues were totally coicidental to Loop though!
One was that I was injecting too many air bubbles into the pod when I injected the insulun for a new pod. Try to eliminate the air bubbles in the syringe prior to injecting the insulin into the pod.
Another was that I needed to switch the location of the pod. I had been usingthe bac of my arms. Now I use my abdomen.
And yet another issue for me is that I need to fill the pod higher than the recommended minimum. This is several units more than I would need for 3 days. My TDD is fairly low since I’m small in stature and the minimum for a pod is more than what I need. Being frugal, I injected only the recommended minimum into the pod. But I learned the pod works best when it has several units in reserve in the reservoir.
Another issue I experienced was with Dexcom G6. I switched from G5 to G6 at the same time I started Loop, again that was just coincidental. The G6 sensors just failed time and again within a day and could not be relied on. Someone on the forum suggested I change the location and that was the key. I switched from using my abdomen to the back of my upper arms. That made all the difference. Readings became accurate and sensors lasted til expiration.
So to make a long story short, sometimes a new system takes a lot of tweaking to get the right results. I’m so glad I, with some generous help from so many on zulip, loop, and this and other forums stuck with it. I’ve been using Loop with OmniPod for 3+ years, and OmniPod for an additional 3+ years.
Good luck and hope you resolve your issues.
I have no problem with my glucose levels rising in the mornings. I do MDI and use Tresiba and Novolog. I imagine this is because I am on a low fat whole food plant based diet.
When I was on a very low carb way of eating, I did have problems with DP
but haven’t for the last 6 yrs since I changed the way I eat.
I do eat breakfast soon after I get up in the morning, because my glucose level is usually between 65 and 80 when I wake up, but even if I wait to eat, my levels don’t rise.
I don’t get dawn phenomenon either, but I’m relatively sensitive to food in the mornings as compared to later in the day - I need more insulin in the morning to cover the same number of carbs.
I actually have to reduce my basal insulin during the early morning hours or I drop low though. Without breakfast, I’m more likely to run low than high.
I’m not on a low fat or plant-based diet, but I think I eat less animal products than the average American. I don’t keep beef or pork in my home, but I’ll eat them on occasion if I’m out and about - maybe once a month. I usually have vegetarian meals for breakfast and lunch and maybe 2x a week for dinner.
I’m not sure if diet/lifestyle impacts DP or just genetics.
Yeah that’s a tough one that, in my experience, only going on a pump was able to solve. Struggled with it for years on MDI, including using Metformin at night and risky stuff like giving myself a low-ish Novolog shot to drive my overnight BG down so it wouldn’t be so high in the a.m. That was pre-CGM, so I had no real idea what I was doing. But nothing worked until I started using a pump, where I could set a higher basal rate starting around 3:30 a.m. to get ahead of DP.
Do you still have the Tandem? One thing a tube pump allows for that (AFAIK) Omnipod doesn’t is that you can try different types of infusion sets. A lot of people who have trouble with the standard teflon-canula infusion sets have tried switching to stainless steel ones (TruSteel for Tandem) with good results. Angled sets are also available, which don’t penetrate the dermis as deeply, and there are different cannula lengths as well.
Uggh, that’s the worst. I’ve been through it many times after 40 years with T1. I call that feeling “T1 claustrophobia” (see OMG, I have diabetes!) Comes on the worst when your D regimen is just not working, and this whole system where you have to commit to a pump technology for 4-5 years at a time can be really bad. But there can be other options, and seeking help from other T1’s who have experience with the problems and the fixes and alternatives is one of the best resources that we didn’t have back in the dark ages. Please stay in touch and let us know how it’s going!
@DrBB, @katers87, @Marilyn6, and @Trying, thank you all so much for your understanding and support.
Here is a basic report I shared with Insulet directly and also sent to my Insulet (OmniPod) rep in response to her encouragement that things will go better if I just tweak my dosing with the OmniPod:
Dosing was not my problem, at all. In fact, in theory at least, having better control of my dosages using the Pod, was the one good thing about it. As I explained in my previous email, there was some kind of hardware issue with every single pod I used (6 out of 6). If dosing had been the primary issue (wasn’t really an issue at all), I could easily have stayed on the system while giving myself extra boluses as needed. To recap, 3 of the 6 pods either fell off or started leaking (not giving me insulin), one just stopped working, and the other two had near-constant difficulty communicating with my Dexcom G6 (even though they had “line of sight” on the same side of my body as the G6). For what its worth, I am not someone who has difficulty with technology. I do expect technology to work how it is supposed to, especially when it directly affects my health. Insulet needs to know about this kind of failure rate. I hope you will share my experience with them. I will be reaching out to them independently.
For now, I have gone back to MDI. The Pod system holds a lot of promise, but it very much still seems in beta mode for the time being (e.g. really needs better quality control over adhesives, much better bluetooth communications protocols and no iPhone app?). I will circle back to it in a year or two to see if they have ironed out the kinks in the system.
I do still have my Tandem pump, and I might consider trying it again with the steel cannulas, but not for some time. I need to recover from this rather dramatic experience, and really think hard about the direction I want to take. I do realize that the common demoninator between my experiences with the Tandem pump system and the OmniPod 5 system is me. That might mean my body just doesn’t do well with pump systems, or that I am just not tolerant or patient enough to have to deal with all the complications involved (not the dosing, but all the other stuff), or it might mean that both systems are just not yet at the level of consistency in insulin delivery that I expect, even though there are obviously plenty of others that are able to adjust to the systems and do quite well with them.
For now, I am going to go back and try diet and exercise routine changes, along with modest tweaks to Triseba and Humalog to see if I can’t get better control of my morning highs. I do think, as has been suggested, that staying away from too much protein or fat before bed is a good idea (I have a habit of eating almonds or mixed nuts for snacks before bed, and I think they convert the fat and protein into sugar over night.
I should also add a couple of points to consider. First, even without using a pump, things are much better now than they were nearly 30 years ago when I was first diagnosed. Triseba is so much better than Ultralente. The Dexcom G6 is a godsend. For the past three years, my average A1C is about 6.5%, which is a lot better than it had been before using a CGM. Flexpens are much better than vial and syringe. So, relatively speaking, I have a lot to be thankful, even though I do despair at times.
I don’t eat any meat (beef, pork, chicken, etc.), although I do eat seafood from time to time. I’ve been a vegetarian/pescatarian for 15 years, so one advantage is that I have low (“bad”) cholesterol. I also have relatively moderate blood pressure. So, again, for now anyway, those other issues are not something I have to contend with.
Sounds wise. You would not be alone in deciding that pump therapy just isn’t that great a fit for you, despite what the entire T1D industry seems dedicated to persuading us all. I do think it’s worth trying because even non-AIM systems like my trusty old Paradigm are much better in terms of giving you control over your basal insulin needs. Once you take your shot, you’re pretty much stuck with it, whereas with a pump you can bump up or zero out the rate at need, not to mention programming in compensation for DP. But the downside is a lot more failure points, which I think is what it boils down to for most pump-resistant people. Injections just are a lot simpler, especially with things like smart injector pens that “remember” your previous dosages etc., that help prevent the kinds of screw-ups that can happen even with MDI (I once gave myself 40 units of Novolog first thing in the a.m. when I thought it was my Lantus injector in my hand. Oops).
I’ve said many times that if it came to a choice I would choose my Dexcom over my pump in a heartbeat. I was dx’d back in the R/NPH era when even finger stick meters weren’t yet a thing and you had to organize your life around your insulin not the other way around. So I’ve been through pretty much the whole gamut of regimens and of all of them, accurate CGM systems are the single most significant advance in terms of helping you stay in control and alleviating hypo-anxiety. As long as you have that, you’re in pretty good control of your fate.
I don’t have experience with Tresiba, but I do know that splitting your basal insulin dose into separate morning and night injections is a pretty common thing people do to account for the metabolic changes and “Lantus fade” effects. So that might be something to experiment with. And it sears my heart to say, because I so loathed the stuff after being manacled to it for 20 years that I came to dub it the “Eat now or DIE!” regimen, but there is a case to be made for judicious and educated use of NPH. You might actually find that the very long effect curve of that stuff serves you well as a way to lower your BG six or so hours out from bedtime. I would definitely approach it with caution, but with the advice of a good endo and your CGM that might be something to cautiously experiment with. Stuff is available for pretty cheap OTC from Walmart.
I tried to work with pods for a year and a half. It was my highest a1c in over 15 years and I was miserable. I know people love them but not for me. I was convinced the length of the cannula and the angle of it increased my insulin doses and continuous highs every time I changed the site.
For the record I was very happy and a1c 4.9-5.3 with tresiba. A1c’s were not that low on the pods.
I have the same thoughts about both the Pods and the infusion sites with the Tandem system. I noticed when I changed sites that there would often be a bump at the old site, which might have been an infection, but also thought it might be insulin sitting there building up at the site, and I think with the pods anyway, insulin also would work its way back out of the site, which might be why I had problems with adhesive–insulin was leaking just enough to cause attachment issues but not enough to be detectable outside the pod area. With the Tandem, I did use two different kinds of cannulas, with different angles, and it didn’t solve the problem (I never did try the steel cannulas but was ready to give up by then anyway). I like what one person said earlier in this thread, for me, there just seem to be “too many points of failure” with a pump system.
May ask I a couple of questions: if your A1Cs were so good (4.9-5.3), why did you go on the pod system? Also, if you are still using Triseba now, what is your regimen? I need to find out if there is a way to use MDI and get my A1C from 6.3-6.7 down further, since my experience with both a standard pump (Tandem t:Slim with Control IQ) and OmniPod 5 have not been good.
Don’t give up yet. Have you tried known good sites with better alcohol, SkinTac and KT Tape?
I did MDI for 40 years and I had lots of trouble when I started with a CGM and then with a pump locating good sites. I’d had bad sites with MDI but since I was correcting with every bolus I never thought about it. Now I’m using 70% less insulin.
Some of the “bad sites were” bad. The others were from my not attaching the CGM sensor or cannula securely enough, not cleaning the skin thoroughly of debris, or not protecting the sensor and cannula sites from trauma.
Bad sites: Fat isn’t amorphous, it grows in thin layers within a protein matrix. Infused insulin normally moves outward in a irregular thin sheet like a puddle. Scars through the fat layer distort that flow and wher flow is imoeeded cell growth is stimulated,making a tougher barrier.
Rolling over in bed on top of a sensor or cannula or sitting into a table and make your skin stretch and move laterally and make a sensor probe or cannula move within the fat causing small tears in the protein matrix which become scars.
If you feel a bump you believe is insulin trapped under your skin don’t forcibly push it down. It could be bleeding or an infection. Cover it and leave it alone.
Where to try:
If you have been able to use a CGM successfully, those same sites should be good for infusion. Start with one from 10 days ago.
How to prep:
A bath or shower leaves residye from shampoo, conditioner, soap,etc and softens dead skin. You gradually shed your entire outer layer every 2-4 weeks, some parts more quickly.
Before inserting a pod use a cotton ball soaked in 91% isopropyl alcohol to mechanically clean the site. Wipe hard from the center of the site outward, do this 8 times until youve made an 8 pointed star. Dabbing, rubbing in circles or back and forth just loosens dead skin, oil and sweat but leave it there. Let the skin dry.
Apply SkinTac in a circle with a 1/2" opening. Let it dry.
When attaching a sensor, cannula or pod, don’t immediately pull the inserter away, Hold it down. Wait a minute. Then lift it away.
Wait an hour. If you believe it’s going to come loose (I don’t) or stressed by activity, put a strip of KT Tape over it. I do this before working on my car.
If KT Tape doesn’t get wet, you may need to soak it with alcohol to remove it.
If a sensor or other pad starys workig loose, SkinTac can be applied to the upper surface to re-energize the pad’s adhesion.
When changing sites you only need to move 1" away. Circle around a known good site with 3-5 more. then move away.
Mark this chart with good sites as you find them: https://www.diabetes.co.uk/forum/attachments/insulin_sites_index2-png.24295/
I had the most trouble with sites 35,36.37, 40 some but less with 8,9,10,13 .
I changed to steel cannulas after the first month. They are easier to anchor. If I hit a bad site and am very careful I can remove the cannula and inert it a ckleaned site an inch away. If that fails I can attach a new cannula to the tubing, fill it with 3-4 unu=[its and insert it at any known good site.
If the poids arent your thing, try the Tandem again, I haven’t had a pump or TruSteel tubing problem, and site siises have become rarer than unexpected highs on MDI. were -
now that I know where to stick them in.
Perhaps try the Omnipod DASH
John
I had horrible absorption (big swollen irritated sites) issues with the Omnipod and gave it up after a few months. I can ONLY use steel cannulas and have quite good success using the Tandem with CIQ. Sometimes I get a site with slow/inadequate absorption, and I’ll move the cannula to a new spot, as @pstud123 mentioned. It’s great to be able to do that and not waste a whole set, insulin, etc.
I also use SkinTac with every site change, and cover the set adhesive with Hypafix tape, as ANY movement seemed to create irritation and inflammation, leading to bigger problems…
This may not be your whole issue, but it really has changed my life, and I wake up with great BG every morning now. Hope you find some solutions here!
I wish I had some great suggestions for your pod problems…I’ve been on some version of Omnipod for about 15 years now and haven’t experienced what you are going through.
I did want to say, even though Dawn Phenomenon is super irritating, it’s actually a good sign. It means your body is producing cortisol in the morning, which means your circadian rhythms are working like they should! Just wanted to give you a silver lining there.
I do hope you can find a good solution! When I was still doing MDI, I got up at 3 am every morning and gave myself a small dose of Humalog to combat Dawn Phenomenon. Might be an option, though it sucks if you can’t get back to sleep. I find this stuff pretty helpful for getting back to sleep when I wake up in the middle of the night: Rescue Sleep® Spray | Bach Remedies | Natural Sleep Aid (rescueremedy.com)
Best wishes to you!
I was on a pump/pod before the Triseba. I had 14 years of pumping before Triseba was created. I am currently on 6 am Triseba and only fast acting when I need it but it usually not necessary. I play with my dose and even if it sounds crazy I am currently using 14 units for 2 days and 13 units on the third day. So 14,14,13. It really diet I think I’m doing a lot of salads and protein and keto style treats. Easy low impact workouts sometimes just 10 minutes helps keep everything stable and moving.
I don’t always use this site I jump on when I get email updates. Feel free to use the messenger with an questions.