Infusion Site Preservation Society

I saw my doctor recently and he mentioned how some of his patients have lost the ability to use parts of their bodies for infusion sites because of damage caused by overuse of those areas. He said the damage was invisible and irreversible.
He emphasized the importance of rotating infusion sites regularly to avoid this.
I’m basically on board with all this, but it has me worried. I change sites pretty regularly and rotate a fair bit, but I do think I tend to come back to the same parts of my abdomen pretty regularly because they are the spots that are the most comfortable and because they work reliably and I have been known to put off changing my steel infusion sets beyond 2 days because they just seem to be working so darn well…or because I’m being so darn lazy.
I’m curious if there’s anything beyond assiduous site changing and site rotation that might help preserve infusion sites. There may be nothing, beyond that, but I was curious if someone had any tricks up their sleeve. (For example, anything topical that you put on to prevent inflammation or something?)
On a related note, does anyone have a system for insuring good site rotation? I move from one side of my body to the other every 10 days (changing sides when I change my Dexcom sensor) and I try to move clockwise away from wherever my last site was, but I feel as if I could use a more rigorous method. I think I just get drawn back to the spots where inserting an infusion set seems most comfortable…

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Ahhh… scar tissue. I feel like it’s half the story of my life.

It’s all about the cyst.

Most of us think of cysts as nasty infectious lumps of disgusting things we don’t want to ponder much, but all a cyst really is, is that your immune system identifies an invader/foreign object. When it fails to destroy it, it’s last ditch effort to protect us is to build an impenetrable wall of scar tissue around it… Called a cyst.

With the infusion sets, which cannot be destroyed, that usually occurs in the 3-4 day mark, which is why it’s advised to change every three days. Some people can only get 2 days, though, and some even less yet if their immune system is in overdrive. The giveaway is that insulin cannot penetrate the protective scar tissue. It gets trapped inside the cyst. If your BG starts climbing and not responding to the insulin delivered, you’ve passed the point of no return for that exact spot. The trick is to be in the habit of always changing the sites BEFORE your glucose spikes, and thus before the scar tissue has developed, and to use as much real estate as possible to avoid accumulating it in any one place. I’m terrified of more scar tissue, and thus neurotic about using every inch that’s a little squish able, including front, sides, and back of my arms, thighs, and torso.

The good news is that it’s not true that scar tissue is irreversible… It just feels that way. Healing scar tissue is an excruciatingly slow process measured in years, but it does indeed happen on its own naturally and can be aided through various techniques such as physical manipulation (deep massaging to help break it up and promote the healing circulation of fluids), light therapies (not necessarily the common infrared, but certain shades of the visible red light spectrum stimulate specific cytochromes related to cellular regeneration and healing), topical lotions and ointments, and even supplements.

My personal favorite scar tissue supplement is “NattoSerra”, a blend of the enzymes nattokinase and serrapeptase. I get it on Amazon through the subscribe and save program, but I won’t link my specific one since I’m not trying to spam it or anything. I take it specifically for the scar tissue in my joints related to my chronic inflammation. (GP suspects I have RA, but I can’t get an official diagnosis because the rheumatologists in the area are refusing new patients and my labs are confusing.) It’s not even a listed benefit of the supplement, which is mostly pushed for heart health. It was my own scar tissue/inflammation research that led me to seek those specific enzymes… And I’ll be darned if it didn’t make for a drastic improvement. It’s the one and only supplement I’ve ever taken where I can feel a nearly-immediate and direct effect if I stop taking it. Admittedly, I don’t take it for diabetes-related scars, but I do know first hand that it works on scar tissue. Maybe the fact that I don’t have scar tissue in my skin is because of taking it? I consider it my miracle “drug”, nearly as essential as insulin, so every once in a while I go off on a rant about it.

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This is very interesting. I don’t use a pump, and have only worn a CGM for about 2 yrs, but I have given more injections than I can count. I have no scar tissue that I know of. I have been taking Nattokinase for around 7 yrs for CVD. I wonder if this supplement could be helping. I will now look up Nattoserra.

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I get scar tissue from injection of long acting insulin like lantus. I also get it from infusion sets if they get inflamed.

I had a real problem on my belly, I rested it and used compression shirts to heal. I no longer have any noticeable scar tissue on my belly, but I still avoid it. Now I use my hips and sides.

I don’t know what your doctor is talking about making your body parts unusable. That sounds extreme. Something I have never heard of.

The scars are just lumps under the skin. Some people get infections, but I don’t. And they do fade.

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I use a 4 site rotation that is left - right abdomen and upper leg. giving each site at least 9 days to rest. So far after 20+ years I have not had issues.
rick

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I think I might have written that in a misleading way…I think it’s spots or small areas that can become unusable, not whole parts of your body.

I use a distinct rotation pattern for my sites, I’m aided by the fact that I must shave hair for my sites. I start my pattern by shaving a narrow strip across the top of my abdomen on one side. I get three or four sites from that shaved strip after which I shave another strip just below that one for three or four more sites. I continue this pattern until I get to the bottom of my usable abdomen area. After that I move to the other half of my abdomen and start the process over.

This pattern gives about 30 or more infusion sites. If I can get 3 days per site that’s 90 days of sites before I have to start all over. This way each site gets to rest 90 days or more before it gets used again.

You should see the strange pattern of hair on my abdomen with usually about 1/4 shaved clean and the rest at various stages of regrowth.

Before I started pumping I never thought that being a hairy person would come in handy

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@Tnyc: I don´t have any advice for you other than what is already said, but I found out I have lipoatrophy after starting regular full body massages. My stomach was never touched during massage, but because of incerased circulation (I guess) my stomach started to look like this (pic from ADA):
Lipoatrofi

The pic is from an article from ADA called “Lipoatrophy Associated With Lispro Insulin in Insulin Pump Therapy”. My doc says it´s common for all types of insulin and bakced it up with studies, I just can´t find them at the moment.

Link.

Sort of like the real estate adage, it’s all down to rotation, rotation, rotation. I absorbed that message way back when MDI was the only game in town, and kept to it after going on a pump/CGM combo. They showed me pix of insulin injection-induced hypertrophy, and that was enough to convince me. With a tethered pump there are not nearly so many options as for injection sites. There are places I used to inject—back of the upper arm, love handles, lower back—where I simply can’t use a tubed infusion set due to yank outs, difficulty threading through clothes, etc. But I still maintain a rigorous rotation schedule.

Side note, but as a lifelong, dedicated follower of the Kinks, I appreciate the reference in your title (intentional or not!)

I have the opposite problem. My over used sites get puffy.

Any opinions/knowledge on steel infusion sets vs plastic sets in terms of hypertrophy?
I’m a convert from plastic to steel because the steel ones just seem more reliable. But, plastic sets are supposed to stay in for three days vs just two days for steel sets leading to the idea that steel sets cause more of a reaction from the body…and maybe more damage as a result? It would be hard to go back to plastic sets but I’m wondering if anyone has seen a study or anything.

I struggle with this as well. There some really good body maps
That I mark the site and date every time I rotate to keep track of where I’m going. I wonder how Medtronic is coming out with their 7 day infusion set.

I guess I’m “lucky” then: I can see a small red dot at each of my last half dozen or so sites. So I avoid those places.

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I rotate sites and switch sides with CGM, similar to the OP. I do occasionally use my back above the waist line - mostly when I need a another site or two before switching sides with the CGM. Only other caution I take is to give a site that is highly inflamed or has a “knot” extra time before using agian.

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My husband suggested regularly massaging (with an electric massager) areas to possibly break up scar tissue. I asked one of my daughter’s physicians about that and he said it might help. Worth a try?

I think massaging old infusion sites that feel sore and may contain some knotty tissue really works. I use a class of an electric massager called a massage gun. These cordless devices weigh a few pounds and exert an aggressive force.

Screen Shot 2021-09-25 at 6.41.12 AM

I find when I use this tool on a sore-to-the-touch old infusion site for several minutes per day, the pain at the site diminishes over several days. I also think that massaging scar tissue can help that tissue heal. I do think regular massage can be used to rehabilitate former infusion sites.

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I am unable to use my abdomen because of scar tissue. I assume at some point I’ll switch to a steel cannula, but I do wonder If someday I’ll be out of luck. I can only reach so far to insert on my backside. I try and use my arms for cgm. I’m not great about rotation because I feel limited.

About a week ago, I ran out of infusion sets and had to wait a week before my Medtronic order arrived. Accordingly, I ended up keeping my infusion set in for ten days. The area around the sire became red and sore to the touch.

When I inserted my new infusion set about 2 inches from the old site, I quickly got a blocked insulin flow alarm. I cleared the alarm and within 10 minutes got another blocked flow alarm. I changed the new infusion set and site to about 5inchex from the original site and all worked well.

When I pushed in on the old site, I could feel a hard lump about 4 inches in diameter under the skin. A week later, the hard lump has been reduced to about 1.5 inches in diameter.

I had liposuction because, after over 30 years of injecting insulin in my abdomen, I developed pouches of fat on both sides, below my navel. I couldn’t alternate between thighs and abdomen because the insulin intensity and duration were totally different. I’ve now been on a pump since 2004.

@Gamin Did you notice improved insulin absorption on your abdomen after liposuction? After almost 30 years of MDI on my stomach, I have significant hyperlipidemia on my stomach (normal BMI / fat distribution elsewhere on my body) and have wondered if I had a very targeted small amount of liposuction on my stomach it might help absorption. Thanks! Jessica