FUDiabetes

Long term pump use and infusion sets

I have been using an insulin pump for a little over 30 years. Most of the time it was a Medtronic although I did have a Disetronic for a few years. Bottom line - I am out of sites to put the infusion set and have squeaked by for several years with no really good spots. I’m of average to thin build and a little more muscular than the average person my age (I like to work out). For the first 5-8 years of pumping I didn’t have good insurance so I would keep my needles in longer than recommended which caused scar tissue. In my defense though, I didn’t have any support and my doctor (back then) never told me why I should change it every 3 days. I use Silhouettes, Sure-Ts and Quick-Sets, depending on where I might be able to find a spot. Over the years I have talked to my doctors, nurse educators, pump reps and even spoke with someone at Joslin. No one has been able to help me. At one point, my endo stated he didn’t believe me so I saw his nurse and started taking off my clothes. She is like, whoa, what are you doing? I said, I’m tired of everyone not believing me. Find a spot on me for an infusion site. Unfortunately, she couldn’t help me either. I put in a Silhouette yesterday in my stomach and it stopped working this morning. I then put in a Silhouette in my inner thigh (only place I really have some fat) and about 10 minutes ago I had to rip it out because it hurt so much. Sorry for the long post but does anyone with long term pump use have any suggestions? I just told my husband that he might have to put it in my butt and I will sit on one cheek for a few days. Sadly, I am serious :frowning:

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I wish I could help you, but I’ve no idea how to deal with this. This is an issue I’ve been thinking about lately, though. I haven’t been pumping nearly as long as you, but I have little fat too. That means I have to be careful to rotate my sites, which isn’t always easy. Some of my infusion sites are already a bit overused, so I find this a little worrying for the future.

Unbelievable. My infusion sites are checked annually to make sure no problems are developing, but they don’t even want to look at yours?

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Actually it’s not a crazy idea. A number of pump users here, particularly those on the Omnipod, use the upper butt – just above or below the waistband, not the part you sit on. I do it myself and it’s very comfortable. In the beginning I worried I’d be pressing against chair backs, but that never happened.

There are also the upper arms, at least one person uses her calves, some people like the back-of-the-neck area, even between the ribs, and I use my pecs but I’m not sure how that works for a woman. (Of course not all these are so easy to reach with tubed pumps.) I can’t use my abdomen because of scar tissue from pump use decades ago, but using the pod has enabled me to use many more sites I would never have thought of.

But of course if nothing works out, you could try injections again. In the 30 years you’ve been pumping, both long-acting and short-acting insulins have improved considerably, and some people find there’s little difference from pumping. Inhaled Afrezza is another option you might explore.

Good luck!

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My son likes to use the back of his arms, works well for him even though he doesn’t have much fat there and he lifts weights.

We moved to NV a year and a half ago from NC. While we still in NC I was into Crossfit and I have to say that I was pretty muscular. When we moved here I gave up lifting (okay, I cheat a little bit) because my abs, arms & legs didn’t have much fat on them and I decided that I would rather continue with my pump then look buff. But I don’t think my calves will work (still too muscular from other exercises). I’ve tried the back of my arms and that is where I probably will go next. I like the neck suggestion. I’m going to look into that. I’ve already used up the upper butt. That was where I used to keep the infusion set in forever when I first started out. So, that is why I was going to try the actual butt. Definitely virgin territory there.

With regards to the Omnipod, how deep does the needle go? Maybe this is something I should check out? I will also check out Afrezza.

Unfortunately where I live (Reno) doesn’t have reliable medical care. The University of Reno is here so the doctors stick around for a few years after graduation and then leave. So there is always a rotation of new doctors. It took me 10 months just to get into an endo in the beginning. I saw him this past October and was going to ask him a question the following week but apparently he just up and quit (or it least it seemed that way since he didn’t mention he was leaving to me). Now the office won’t answer my calls so I don’t know if I will have to find another endo or get lucky and go to one of the other ones in the office. If I need to find another one, I’ll have to count on another 10 months before I can get in.

If nothing else, I hope my story is a cautionary tale to those of you who haven’t been pumping long. Change those needles frequently! :slight_smile:

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That would be my suggestion as well. Novolog and Lantus are very good. Certainly you don’t get as much control as with a pump, but what can you do? You’ve had a good run …

Thanks for the post though - I have been on a pump for only 5 years and can see how this could become a problem. When you say “change those needles frequently” - what are you thinking? every 4 days? Longer / shorter?

Thanks again.

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About 4.5 mm, at a 45-degree angle.

And to those of us who have been pumping long. I started pumping in the early '80s, and because I (a) paid out-of-pocket for everything, and (b) was lazy, I’d frequently leave my sets in until they were itchy or red. Forty years later, I can still see where those sites were. These days, one thing I appreciate about the Omnipod is that it makes me change out every three days.

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I was told (of course not at the beginning) to change the infusion sets every 3 days. I’m doing it now but that’s like closing the barn door after the horse escaped. I’m going to look into the Omnipod. Thanks for all your suggestions.

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After ten years some of my fave spots are becoming untenable, such as the front of my thighs. Last few insets left a couple of nasty scars there, some of 'em still hurt after a week. Anybody using a tethered pump, I’d love to know how you manage your tubing when you’re using your upper arm. I tried running it through the shoulder hole and down to the waist of my pants, with the pump living in my pants pocket. But it was awkward as heck when having to remove trou, and wanted to snag and yank out when removing or putting on my shirt. Similar problem with using lower-back/upper buttock region: clothing abrasion wants to peel away the adhesive, not to mention the awkwardness of trying to unclip your tube in such a hard to reach and difficult to see location.

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Ease of attach/detach depends on the type of infusion set. I found the Tandem right-angle cannulas nearly impossible, but the Medtronic quicksets are easy anywhere I can reach with my fintertips (fiddle around until the ring circles the post, then give a small twist and it locks.) The Smiths Cleo 90 is nearly as easy: place the ring over the post in any one of 8 directions, then push the latch/needle into the post.

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I don’t have a good method especially because I prefer using shorter 23"/32" tubing.

If I’m not in public then I’ve taken to just clipping the pump to my collar.

Other folks take the approach of creating a hole on the inside of a shirt pocket. You can keep the pump in the pocket & route the tubing out the hole & under the shirt to the set on your arm.

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My arms are a favourite spot, and I also run the tubing down my shoulder and keep my pump in my pocket but I keep the clip attached (although I don’t use it). If I’m taking off my pants, I clip the pump to the neck/collar of my shirt temporarily. If taking off my shirt, I usually disconnect the pump, which is a little annoying.

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I’m no crossfitter, but a decade of bike racing left me with challenges using some typical sites (arms, back, etc). Recently switched to Ominpod from Medtronic and, while the transition hasn’t been perfect, its opened up some new sites that I’m thrilled about. Not sure how much its their variation of catheter vs freedom from tubes. Currently using my quad just above the knee and fairly confident the calves would work too.

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I tried my calf. The insulin didn’t absorb but rather pooled beneath the skin to where I had to take the pod off a day or so in. There was a lump the size of a chick pea and hurt like the dickens! My basal rates vary throughout the day between 0.5 - 0.9 u/hr. The PCP had to lance it; I don’t think they were impressed that I tried using that as a site for the pod. I still have a scar.

I’m saying this to not stop you or anyone else from trying the area, just so that you’re aware it might cause a problem.

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I mean this seriously - maybe you should put on a little weight. A little more good and a bit less exercise might make life more pleasant. I can’t imagine wearing my infusion set in my neck. Don’t mean to be flip.

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I had a similar issue with my upper quad on the ridge of the vastus lateralis. Didn’t need it lanced but won’t be using that site again.

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I am grateful that I am a female because I discovered years ago to put my pump in a sports bra. So no matter where I put the infusion set I don’t have a problem with the tubing. I started doing that because I was tired of people asking me if that was a pager on my belt. Yeah, okay, it’s been a while. I was young and very self conscious about it.

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Are you not bike racing anymore? I would think that your quads and calves would be too muscular to put a needle in. If you don’t mind me asking, what does putting an Omnipod in your quad look like? Don’t they stick out so you would look like you have this weird lump near your knee?

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Years ago I was doing some serious ab work and I had to tell my workout partners that I had to quit doing it because I didn’t have any fat on my abdomen. They looked at me like I was crazy saying that I needed to get a little fat on my belly. But then again, they didn’t live with diabetes. And the neck area that I am looking at is kind of lower neck, upper back. I think it has potential. I’d be okay with a few more pounds but … :pensive:

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Well nobody is bike racing in 2020. I still ride and will race again, but bikes makes you more lean than muscular (at least compared to CF!). I have to do the the skin pinch to avoid muscle but otherwise its been smooth sailing.

The pods do have a lump under clothing. My pants are looser and I’m pretty good at not caring anyway, but I could see that being a problem for someone else. Haven’t worn shorts yet, but its gonna be pretty noticeable when I do. They’ll send you dummy pods to stick on and try out.

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