I have a confession to make. I’ve had Type 1 for 15 yrs, I’ve been pumping for 12. I’ve read posts about scar tissue and how it makes it more difficult to insert cannulas, affects insulin absorption, etc, and although I’ve experienced those symptoms, I don’t know exactly what scar tissue is, if you can identify areas of scar tissue by sight, and whether there are any ways to “get around” it once it’s formed. Any thoughts?
Leaving it alone for a year or more helps a lot of people. As a teen, I had crazy amounts of upper arm and upper thigh scar tissue that are no longer there now that I’m almost 30 and haven’t injected in the arms and legs for ten years.
Rotation helps. And not left/right/left/right in the same area of the body, but serious rotation. With my current pump, I really really try to rotate areas so that in a given month, I may only hit a quadrant of an area once - as in left butt cheek, lower rt back, upper lft thigh, right lovehandle, upper rt abdomen, right butt cheek, lower left back, upper right thigh, left lovehandle, upper left abdomen, etc. Ten set changes a month - at least ten different areas for an infusion set. I don’t follow that religiously, but I do have whole areas of my lower abdomen that I overused for 8 years that are completely useless to me now for absorption. Marie B is my site rotation hero. She keeps a site rotation log on a piece of paper so she knows she’s rotating.
There is also the advice to use warm compresses, but I’ve never actually found it did anything for my scar tissue.
Personally, I can’t identify it by sight. Sometimes you might be able to feel a hardened lump (I used to feel them in my arms and thighs). Sometimes the skin is slightly puffy and raised (this happened to Amy T here). But some telltale signs are resistance to the insertion, resistance to the removal of the cannula, blood or insulin seepage after removal, and the biggie - inexplicably high blood sugars!
Thanks, Melissa – very helpful! I’m going to try your suggestion of more aggressive rotation.
Thanks Melissa, for the details. Every time you address this issue I learn something new:) Like Dave, I am not certain what is scar…and in my case, what is fat or hardened tissue. Given my reaction to insulin injected and pumped…I am pretty certain I must have scar tissue from inflammation. I remember when I took shots I even broke up shots (of UL and later Lantus) so as not to inject too much into one spot! The injection sites would itch and often get raised bumps. Now w/ my pump sites I have redness 1/2 of the time and sometimes little raised bumps under the adhesive. I took a site off my upper/inner arm tonight because it was itching like crazy! I had those terrible bumps and it was only 24hrs. I have not used that site and just wonder if our bodies are more sensitive if they never have been used…good thing is that absorption was wonderful…bgs in the 90’s most of the day. I started up a site on my lower abdomen but, way out on the hip and of course…no pain, no reactions. I went into Medline (have university access) and it seems researchers believe only 3% of those on purified human insulins develop local reactions…I would think more. They did admit that 51% of pump users experienced erythema at the site (redness/inflammation)…which I would think IS a local reaction to either insulin or the infusion site. What was interesting is that they are pretty sure that it is to protamine zinc (see increased white blood cells in tissue). So the take home message to me is to use as little insulin as necessary to get great control, rotate sites and talk w/ doc if having site inflammation…maybe a trial of a new insulin or infusion set may help.
Your take home message sounds right on target, Patricia.
Also, you should maybe experiment with different skin prep treatments before you introduce the infusion set. While it sounds more like it’s the insulin that irritates you than the adhesive, it’s possible that you could prepare the area for insertion in a different way to make it more amenable to accepting the cannula…whether with neosporin, orajel, or the many different skin-tac/ivprep/tegaderm/second skin dressings available. I don’t know - it might help reduce some of that redness.
Also, and this was HUGE for me, you may need to change sets more often. I left one in for five days once and developed a hardened lump, a staph infection, and a semi-permanent leakage hole in the center of the lump! I think it’s unlikely I’ll ever be able to use that little quarter sized area of my abdomen again. (That was 3 years ago.) Even if you change them when you should though, some people have to change them out more often than every three days. Maybe your sites would do better with 2 day sets.
What insulin do you use now? If Lantus and UL both did that to you AND whatever you take now does it too, you may just not handle synthetic insulin (or the byproducts in them) well. But yeah, maybe there’s an insulin out there to which you’d respond differently. I use Apidra and was reading something the other day about how the different analogs form crystals differently in your body (my paraphrasing sounds moronic, but it made sense when I read it). Perhaps you could try a different fast-acting, or try pork insulin (good luck finding it).
If I were you, I’d try everything and make a note of it before going to your doctor. Many docs assume we’re just not rotating, changing out, or dressing the sites compliantly. You need to make sure you document your evidence to the contrary.
I have been pumping for 9 years. I change sites every other day to avoid building scar tissue. Some people keep their sites too long, and that can cause scar tissue. I had abdominal surgery and avoid that area for obvious reasons.
Hi Melissa,
I am new to pumping and was wondering about the site rotation you use. I have jsut been starting about 1 inch from my bellybutton and then moving away from it an inch at a time to my lower back. Do you know how long it takes for scar tissue to form? Also thsi is kind of embarrassing to ask but when you say you use a butt cheek do you mean where you would sit down or near the top of the cheek?
The top of the cheek. Like when you sit down, the parts that you aren’t sitting on. There’s plenty of room there! It’s one of my favorite spots. The only thing to be careful of is getting changed or going to the bathroom…I’ve definitely ripped my fair share of sites out that way… 
Cost is an issue…and yes, maybe I have been running sites longer (3-5d) to get the most for the money…and maybe this is my primary issue? I am buying sets myself. I am fasidious (clean and care for them) about the sites and use skin prep…QuickSets have been the best for minimizing set irritation for me. Have used Novolog since it came available…tried Apidra (1 vial) a while back and had some issues w/ blood sugars…odd, irradic…but, not certain…maybe it was the Lot 8’s (I had them and stopped using them!) or scar tissue issues? After finding Tu, I have been more hopeful and testing a lot more, taking note of differences in methods and over all in much better control:) I went back to trying arms and will try back and butt next. I will try switching out sets at 2-3 days and see if this helps. Thanks again, Melissa:) I just wish all of us had access (cost) to supplies (sets, CGMS) given the issues w/ T1…I just sent off my signature to the Care petition for better FDA oversight of materials and medications…. I would recommend everyone consider signing it and adding your personal considerations. I know I followed and contributed to the lenghty discussions on inaccuracies w/ blood sugar meters some time back…we should demand better products and oversights for insulins, medications, pumps, etc.
Take care all:)
great posts, everyone! here's another discussion on the matter. Like you, Susan, I had surgery 30 years ago when I ruptured my kidney, and have a huge scar; I am also short, so “real estate” is limited. I have to change every other day now. I keep a separate notebook describing where I put my sets, so I can make sure I’m rotating much better than my first 17 years with the pump, when I only used my abdomen. I get my husband to help me put it in places I can’t reach.
and Melissa, you are the tops!
I was building up scar tissue on my abdomen while using Quicksets. I called Minimed and asked them to change half my next order to Silhouettes. Now I rotate from left side of abdomen to right side of abdomen (Quicksets) to left side of rump to right side of rump (Silhouettes). I complete a five point star pattern in each area before moving on to the next one.
For me, scar tissue feels like thick skin. Almost like I have a wallet under between my muscle and epidermis. (didn’t want to repeat the word ‘skin’) It’s not noticeably thicker on looking at it or rubbing my hand over it, but when pinching it I pull up a more than expected…
Terry
Great description and word points for vocabulary!
Thanks for all the tips, everyone! One follow-on question for “the panel”… sometimes, in the areas I use most frequently (left and right abdomen, just below the belt line), I get resistance when inserting the silhouette cannula. Feels like a layer of tough tissue when I’m about 50% in that I can puncture with some additional pressure, then the insertion goes smoothly the rest of the way. Is that a form of scar tissue or some other membrane? It’s been a mystery to me.
Sounds like scar tissue to me. I doubt it’s another membrane unless there’s also bleeding.
Try another spot, say your flank, and see if you get the same resistance.
Terry
Is this the reason why I like using the Sure-T 's ???..it has simplefied( sp ?) my life somewhat ( pumping since 2001 ) …no cannula to bend 
.Living with diabetes for over 26 years. And I try to rotate .
That’s exactly how the scar tissue on my lower abdomen behaved when I was using quick-sets, so I agree with Terry. It’s probably scar tissue.
I know when I was on MDI (multiple doseage injections) in my early days - I built up abit of scar tissue. It felt like I was going thru’ layers of tissue paper - that had resistance - once thru’ the “tissue paper” - then the needle would go thru’. It was a wierd feeling! Is this how scar tissue feels like to a few of you?
SIght, I suppose that MIGHT maybe depend on how big we were talking about. However it is 100% identifiable by FEEL-touch. While it is true the vigilent rotation may maybe reduce it… there is only so much rotation you can do and after 10, 20, 30, 40+ years. you WILL hit spots that you’ve used lots and lots and lots of times before.
I see no way around it.
Something is below our skin whether a shot/canula. That has to add up at some point. Maybe immediate, likely decade(s) but it will add up eventually.
I like the idea of deep tissue massage might work? Depends on whether this scar tissue of ours has the same characteristics as say surgical scar tissue does/ If so it should work, be able to be “broken up” somewhat.
Regardless it (deep tissue massage) certainly feels good, and does not hurt a bit!!! 8 9
Yes, but in some places it feels more like parchment. As in tougher to pierce than mere tissue paper!
PS: The new infusion site waaay round toward my back is working OK. That’s the spot I’ve dedicated to Marie B, MelissaBL, and Dave S for the great reminders about rotating! I wonder if next I could get companies to sponsor various infusion sites on my body. They name stadiums, don’t they?
I’ve found this thread to be really helpful…I injected mainly in my lower abdomen for the best part of 14 years, and now that I’ve started pumping I’ve found that that’s one area I have to avoid as it never works when I use it.
However, I’m new to pumping and wasn’t aware there were so many areas you could use…I’ve heard people here mentioning arms, thighs, lower back etc…does that mean you can insert your infusion set pretty much anywhere on these areas? I feel a bit wary because I was told off by a diabetes specialist for wearing an infusion set above my belly button…I thought that was ok, but am I wrong?!!