Will I ever be able to pump again?

Technology & Management
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As a frequent reader of this forum, I’ve decided to finally make an account! I’m hoping that you friendly folks might have some insight, shared experience, or could just brainstorm with me through this issue.

Some background: I was diagnosed with type 1 in 2000 at age 4. I spent my first 10 years on MDI, and then I used pumps from 2010-2020. Most of this time was spent on Medtronic pumps with a short foray into the Omnipod Dash from late 2019 to earlier this year when I went back on MDI.

The biggest reason I transitioned back to MDI from the pump was the PAIN I started experiencing with every single site. I had a blissfully pain-free 8+ years of pumping, but around summer 2019, I started noticing that a lot of my sites were bleeding right after insertion, and sometimes the site would be intensely painful and I’d have to take it out after 20 or 30 minutes.
The bleeding and pain began increasing in frequency to the point that on site change days, I regularly used at least 3, 4, or maybe even up to 5 or 6 infusion sets before I was able to find a site I could tolerate.
I decided to transition to the Omnipod in the hopes that the angled cannula might help, and it pretty much solved the bleeding problem and the pain of initial insertion. However, the sites would still become increasingly painful throughout the duration of wear, and I would often have to grimace my way through the entire 3 days.

I knew there were other options to try, like steel cannulas, but pumping was putting such an enormous toll on my mental health that I decided to switch back to MDI earlier this year. I now use the InPen and have nothing but positive things to say. I actually really like MDI for a variety of reasons, and though my time in range has been consistent to that of my pumping days, my A1Cs have improved from low 6s to my most recent 5.7%. I don’t miss the pump, but I do hope it will be an option for me in the future to try again if I want to, especially given the incredible closed loop systems available. However, my last months with a pump were so horrible that I worry whether it will be an option for me in the future.

Sometimes I wonder if my sites were just getting overused, but I have always been diligent about rotating sites all around my body and don’t see/feel significant areas of lumps or damaged skin. Sometimes, I think it might be an allergy issue. I have always used Humalog due to insurance coverage, though I don’t really notice any issues with injection sites with Humalog. I am skeptical about an adhesive allergy because I use the Dexcom G6 with no significant reactions and likewise have used many other adhesive diabetes devices including the Freestyle Libre.

Has anyone experienced something similar? I’ve seen posts about itchy sites, but nothing about sites that are consistently bleeding and intensely painful. If anyone else has experienced this, did you find out what caused it? Even if you haven’t experienced this, do you have any ideas re: cause, troubleshooting, or my future pumping prospects? I’ve discussed with my endo but aside from suggesting trying Novolog, she didn’t have any concrete ideas either. I’d really appreciate any insight! Thanks!

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I’m so sorry to hear about your experience. The only thing I can think of is that you have an allergy to the infusion sets themselves, or perhaps it had to do with the length of the cannula. Cannula depth as you probably know is usually selected based on how lean the body is but there may be other factors to consider and discuss with your doctor. A pump rep might be able to let you try options and combinations you haven’t tried before (maybe a 6mm angled insertion would work better than the same at 90 degrees, etc.)
Having said all that, it sounds like injections are working great for you. Your A1Cs are admirable and even better than when you were pumping, which turns out to be the case with some people. Of course some see pumping as offering greater convenience over shots. If that’s what you’re looking for maybe a different set type will help. Wishing you the best and I’m so glad MDIs do so well for you!

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Hi @type1talia and welcome to TypeOneNation and the forum. Given what you’ve written and in my opinion, switching to Novolog is not an expected alternative because If you were having an issue with Humalog, then you’d have the issue whether you shot it or use in infusion set.

So it has to be the infusion system. Bleeding is a function of hitting capillaries. For me it’s random but it still happens. How may bleeders for you get with your cgm?

Pain is independent of bleeding for me. I don’t have a lot of fat and so I use 6mm cannula. I have had decent luck with 90 degree sets. Sometimes I get pain near certain muscles. Yes I’ve had to rip sets out due to pain. Right now the top of my butt is virtually pain free but I can’t use my belly at all.

The tapes can cause surface irritation and pain most people have trouble with that. It’s usually easy to spot it looks like a burn where the tape was. Do you get irritated by the CGM tape? If no, it may not be the tape. CGM tape is most aggressive because they stay in so long.

That’s all I have in the troubleshooting department. I think that switching to a pump is helpful but comes with additional failure points and complexity. If you are getting acceptable results from MDI then my final thought is: why would you change. Closed loop pumping will not improve your A1c it’ll likely raise it. Which may not be a bad thing if you are getting too many or severe hypos. The first rule of medicine is: if what you are doing is working then keep doing it.

Cheers good luck :four_leaf_clover:

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@type1talia Hi Talia, and welcome to the JDRF TypeOneNation Forum! It sounds nice that you “finally joined” as a member after having a positive experience viewing from outside; and yes, there are nice, and helpful listeners here.

I have not experienced what you have encountered with pain, bleeding, and continued frustration during the 16 years that I have used insulin pump infusion sets, and I’ve used about 8 different kinds if infusion sets - Medtronic and Tandem. I don’t have “a fix” o offer you, so I’ll approach from a different angle:

Think back to when you decided to change from apparently effective diabetes management with the MDI technique to an insulin pump - what were your expectations? Has a pump delivered what you wanted?

MDI diabetes management technique, especially now when you have use if a good CGM can produce awesome results. Like you, my HbA1c averages were lower with MDI before I began using my first pump. But even though I have been getting A1c readings since the early 1970’s, I have never used them as a goal - I use data like that as a tool.

I hope that soon you will be free of the discomfort, first the physical hurting, so that you will soon be able to fully live, and enjoy life while leaving diabetes management to the always present, but not too overbearing part of life.

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Thanks for the sympathy and your idea, Dorie. I like the idea of taking it to a pump rep and seeing if maybe they have some ideas. I wonder, too, whether it’s an issue with the cannula material.

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Thanks, Joe. I appreciate your methodical approach! I don’t find bleeding to be much of an issue with my Dexcom sites. In my 4+ years of using various CGMs, I can only think of 3-4 bleeding episodes where I had to pull the sensor early. That’s why I’m so puzzled with the sudden bleeding issues I had with pump sites. And occasionally a Dexcom site will be itchy, but it’s very mild. I don’t consider it to be a problem at all, so, like you, I’m skeptical about the adhesive being the problem.
After reading everyone’s replies, I am really leaning further toward pinpointing the cannula material as the potential issue with the pain. Though, what keeps puzzling me, is why it didn’t hurt at all for so many years and then suddenly I started having this problem.
As you said, I don’t want to change back to the pump from MDI at the moment—it’s just an option I’d like to keep open for the future.

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Unfortunately there may be only one way to find out. BTW, I don’t know if any of the materials are supposed to be hypoallergenic/allergy resistant - but if so, as an aside the only products my mom was allergic to were hypoallergenic ones! Not talking medical items here - it was related to cosmetics. That’s just to say that even if any products are touted to be helpful for people with allergies, try to get samples before investing in a full supply if you go back to pumping.

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Thank you, Dennis! To answer your question, I wanted to change from MDI to a pump the first time really because I was in high school and saw it as a way to bolus more conveniently and seem more “normal.” Now, I don’t care about that so much.
I want to keep an insulin pump as an option since, as you noted, type 1 will always be a part of my life. So, I like the idea that I’ll be able to switch things up in the future, in the event of technological changes, changes in my own management preferences, etc.

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Hi, I just thought I would share my experiences. I have been pumping for 16 yrs now and using cgm for just over 4. I was experiencing the bleeding issue on a regular basis like you. My endo suggested that I use a reusable ice pack on the area where I was going to insert my site for several minutes prior to insertion. I have adopted this practice as my normal routine even with my cgm sensors. I have found a massive reduction in bleeding issues and even a slight reduction in the painful sites. I only had painful sites maybe every couple of months but since starting the ice pack I have reduced even those. Just a tidbit that saved me a ton of wasted sites and sensors.

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I have had “all of the above”. Hitting a nerve, gushers when removing infusion or cgm site, painful insertions, skin irration and an exercise in futility trying out various cannulas. Still I like the convenience of the pump, using the G6, the alarms & reminders, & the closed loop system. I have concluded that management of T1 with a pump & cgm is both labor intensive & time consuming. Sometimes I think that I could easily go back to 5 injections a day but i know that memories of how simple things were in the past are usually an illusion. My pump & cgm supplies take up a lot of space in a small house. I stick with the closed loop system bc I keep inching forward towards better control & management of T1.

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Hi, I do sometimes get some pain issues, but this happens as I am on the leaner side. However, I have found that using a 6 mm steel infusion site works the best for me. It is small, and I can control how it is inserted. I found with the soft ones that the spring loaded insertion mechanism, initially makes a bigger hole to insert the cannula, this with the force it used, tended to cause me some pain. Now I just have this little steel needle to insert and it is near the same size as what I used with MDI, so I just need to find a right spot and push it in, if I start to feel an issue as I’m inserting, I stop and move it over a bit.

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That’s a great tip to know about, Jason. Thanks for sharing! I’ll definitely try it if I decide to go back to the pump!

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Thank you, Joseph! It’s nice to hear that the steel cannula fixed the problem for you. Do you find that you can “feel” the steel cannula, even if it’s not painful? Or is it pretty sensation-free?

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I tried the true steel canula. Discomfort from start. Tried full day bc I thought I could get used to it. Tried a new site with same results. Too painful for me to use. I do have to say that after 64.5 yrs of T1 I do have a lot of scar tissue.

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For me its pretty sensation free. I do feel it sometimes when I am running and I have my running belt in a spot that pushes on it and rubs. I’ve learned where I can put them and not feel at all, but still need to make sure I rotate around enough. I’ve been using them about 6 years now, the Trusteel now and the contact detach prior.

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Hi Talia,

Years ago I used a Pen Pump which had a small steel “canula,” (this pump is no longer on the market). Like Joseph, I would adjust it if it started to hurt during the insertion. I only felt the “needle” on rare ocaissions and these were usually a small pinch due to my twisting or bending the wrong way. Otherwise, I didn’t feel it at all!

Pam K
T1D 56+ yrs and counting!

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Hi @pamcklein. I’m curious about your pen pump - could you share a bit more? Thank you!

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Welcome! I have used the Medtronic 670 for over 3 years with no problems until about 5 months ago. The 6mm cannula was causing pain and kinking upon insertion. My BS would climb above 400 because insulin was not being absorbed but it did not tell me there was an occlusion. When I would pull the cannula out, it would always be bent. I wondered if they changed something or mine were defective.
I went back to MDI in June and love it. I have the Dexcom G6 and have lowered my A1C from 7.1 to 6.5 so far. The freedom from the pump is so liberating. By the way, the only sites I use for the CGM are my upper thighs and it works great. I use both the front and side areas and have never had a problem. The accuracy is amazing. I know they don’t recommend that area but it works for me. Not sure I will ever pump again.

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Did you ever find success?? I am asking as a disappointed (and exhausted) T1 that has blown through 7 infusion sets in less than 72 hours for the similar bleeding and pain issues. I, too, keep having to go back to MDI, yet with greatly inferior results. I can get very insulin sensitive (239 grams of carbs for low’s and no bolus the other day) and without warning. I almost cried when I went back to the pump a few days ago and gave myself the perfect 0.275 unit bolus. But, I had 1 decent day out of 5, so back to clunky MDI I sit. I am hoping to give the Omnipod a try as one reader on here mentioned that her daughter really wanted the Tandem pump to work for her, but the infusions sets gave her issues and the pod worked very well. It sounds like that worked okay for you initially with the bleeding, too. And, maybe our pain is different. I seem to just feel the knicking of the capillary kind of pain, yet it happens nearly every time now. I’ve also tried nearly every set from Animas, Medtronic, and one from Tandem with no luck, even the steel cannula. They all bleed quickly. I also tried icing my last site before insertion and those were bleeders, too. My CGM sometimes gushes blood, yet less frequently so I am tempted to try the 9 mm cannula as the sensor insertions seem a lot deeper. My 4mm pen needles seem to do fine with bleeding, though. I also stopped baby aspirin, tumeric, and fish oil as those can increase bleeding, yet my INR (blood clotting value) is in range. I’m not interested in what seems to be the newest in the pancreas project either, as I feel absolutely miserable with even slightly elevated blood sugars and the external automode landed me in the 300’s a few times. Keep me posted if a switch in insulin brands is helpful, too. I feel like I’ve had the bleeding with Novolog and Lyumjev, too, yet I predominantly use Humalog in the pump. Hope you are feeling well!

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.Egan @mamamaegs , have you tried inhaled insulin?
No needles, no infusion sets, no pain. I don’t use it, but I know a man who does use inhaled insulin with wonderful results.

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