Almost 12 years diabetic - 4 months on the pump, general thoughts (dislike)

Diabetes Technology Insulin Pumps
1

Hello all, this is my first post on this site. I found it while browsing for others who don’t necessarily think the insulin pump is the best invention since sliced bread. I’ll share my feelings and maybe others can tell me if I haven’t given it enough time, or maybe I’m doing something wrong.



I have been diabetic since 19, I’m 31 now. I resisted the pump for many, many years at many different doctors disapproval. Finally, I gave-in last October. I think I hate it. Yes, it does have its benefits, but I’d like to express some frustration. Mainly, I wanted to have a continuous glucose monitor. If I’m going to wear one of those around, I might as well just have the full-on pump for all the reasons they tell me are good. I was setup with the Medtronic Paradigm, with continuous glucose monitoring.



In the beginning, things seemed to work rather well. Changing sites and sensors took me a lot longer and hurt a lot more than the shots I was used-to taking. Not having to carry insulin pens with me was nice, and the CGM is great (when accurate). Then, come November the pump put me in the ICU. I changed infusion sites in the morning before work. By lunchtime I felt horrible and went home. My blood sugars were on a steady climb since breakfast and were pushing 300. I bolused additional insulin throughout the morning, but to no avail. After I started throwing up I called my doctor, who told me to get to the ER. An IV drip of insulin and 24 hours later, I was feeling just fine. It turns out the infusion tube kinked inside of me, so I was not getting insulin. However, the pump never indicated to me that it was having a delivery problem. The medtronic rep recommended I use a different type of infusion set, which I have been.



Fast forward to December and January. I start experiencing similar problems, but fix it with a manual bolus from an insulin pen before it puts me in the hospital. Then I install a new infusion site and go on. After having this happen a few times, it was suggested to try sites on my upper buttock, instead of the abdomen. I have done that 4x now, twice it has not worked (including now).



The first time I moved the site there, no problems, everything was great. 3 days later, I swtiched sides. One day in, and I started having some pain. 2 days in, there was swelling and a bump forming, as well as high blood sugars. I removed the infusion site - with some blood, pain, and signs of infection. I sited a new infusion on the other side of my body. That one worked fine.



Which brings us to yesterday. I inserted the infusion set and went through the day normally. I woke up this morning with some pain and signs of bleeding from the infusion site. “Great,” I thought. By lunchtime today I was +300 on the CGM, and relying on an insulin pen until I can get home from work and change sites again.



It seems that the sites will bleed or bruise, and that reduces or eliminates the ability for them to absorb insulin. It’s very frustrating that this device I am supposedly relying on is only working 2/3rds of the time, and I end up taking shots anyway.



Here is my laundry list of complaints about the pump:

  • See the above story
  • I was told it would eliminate many of the highs and lows I was seeing with shots - it may have reduced some their severity, but has probably increased their frequency, especially lows
  • My A1C went from 6.7 before to 7.3 in the 3 months after starting the pump
  • I hate the constant reminder of "hey, you have diabetes" every-time I see the thing.
  • Having to unhook and be extra-vigilant when: showering, swimming, etc. - not to mention the scarring and sensors/infusion sets stuck to me.
  • Getting tangled in the cord
  • Changing basal rates because I am doing something active (exercise, work, etc)
  • Just generally feeling like less of a normal person because this thing is always connected to me

Are these normal new frustrations? Most things I read before going on the pump seemed to be that people connected to it, magically their management was better, and they fell in love with using it. I don't know how this is possible, I am debating getting rid of it! 4-6 shots a day and 7 finger-pricks was way less involved than trying to manage this thing. Will it work today, or won't it? I better make sure I bring an insulin pen, just in case.

I will admit the upside of being able to skip/delay a meal instead of being on a very specific timed eating schedule. I'm not sure if this outweighs my negative feelings though.


I guess I'm just ranting and looking to see if I'm being irritable (remember, my BG is high) or if the pump is not the wondrous device I was lead to believe it would be.
2

It sounds like it’s time for a pump vacation (aka trial separation)! The pump has it’s pros and cons, for sure. Most of us who glow about the pump easily forget about the transition period because we’re so deeply in love with it now. It took me at least 6 months, if not a year, to adapt to the pump. In that time I took at least 2 pump vacations (usually a few weeks) that I can recall. Each time I went back to the pump with renewed interest because it did have pluses (more flexibility, more convenient though certainly more physically cumbersome). Eventually I went back to the pump and have been on it solid for at least 5 years (except when I plan to scuba) and wouldn’t given it up. Then again, I never had the site issues that you’re having. I do sometimes drift up as my site starts to crap out, but I’ve never gotten to DKA (knock on wood). If I had had your experiences, then I may have felt differently about going back.

I don’t think you’re just being cranky. You’re giving it a fair shot. Take a break for a while before you burn out on it. See if you miss it. The pump isn’t for everybody. If you were ‘happy’ on MDI and you were doing well, then there is nothing saying that you’ve got to pump. I think the idea that gives better control is a bit of a stretch. It makes it EASIER to achieve better control but it’s still work. But you were putting the work in before and so I don’t think that this will be about control for you, but about what works. If that makes sense.

Rant any time, it’s healthy and normal!!!

3

I agree completely. Spent 36 years with T1 before I finally broke down and got an Omnipod. I was put off by the tubing and having to wear the thing 24/7, like you said, it’s a constant reminder - something you don’t have with the pens. And when you stick a pen in and inject you KNOW it’s going in.

I’ve been on the Omnipod for about 4 months and most of the time I don’t know it’s on. I just keep the PDM in my purse. I also carry an extra pod. The good thing is it’s one unit, all contained so if I have to change it out it’s pretty simple and I’ve even done it in restaurants! It’s DEFINITELY not easier, just more precise with more options. The only thing I can say that I love is the fact that I can exercise and dial in a temp basal so I’m not consuming tones of calories trying to keep bs up. I’m hoping to lose a bit of weight this way.

It’s definitely not for everyone. “If it ain’t broke, don’t fix it!” I kept my A1c’s under 6 the entire time on shots, had no problem shooting up in public, and could bolus according to my carb intake - just like pumpers, so I never felt the need to change. Don’t let anyone talk you in to using one unless you really want to and NEVER FEEL GUILTY about not pumping! At least you gave it a shot! (pun intended :))

4

I go back and forth in my mind that the grass in greener on the other side.

I have been type 1 for 44 years and never ever got use to shots, and have been pumping insulin for 8 years. I rarely have a bad site, but if I did and had the episodes like you are experiencing I would be back on shots in a heartbeat.

Sounds like you need a pump vacation and perhaps if your basal was Lantus, you would not have to be on such a tight eating schedule.

I was on NPH and regular for years and remember the schedule, but with my year of twice a day of Lantus and humalog for meals (poor man’s pump) I felt pretty good control.

I find with the pump I have quite a few lows, especially with any type of movement, so I am not totally thrilled by pump usage. With all insulin delivery, less is always best, less carbs, less insulin, yada, yada, yada.

5

I sort ofl liked shots because I liked to pretend I was Keith Richards. Re the pump, I liked it pretty much immediately but, if you don’t and were happier with your results injecting, you shouldn’t feel shy about going back? I like not lugging all the junk around though. Occasionally I don’t have any clothes on and it’s hard to find somewhere to put it but other than that, I really don’t notice it.

6

did you rip the cap of the syringe off with your teeth?? :slight_smile:

7

Yes. I had 2x syringes, R w/ duct tape around it. I would use them until the numbers wore off, do R IV when my BG got a bit high, sometimes with strobe lights going. I also just took the E string off my Telecaster so I could play around w/ the GDGDBD tuning after I read his bio too. Unfortunately, the little dog will not tolerate my giant Ampeg so I can’t quite get the full effect. One of these days, she’ll have to be groomed…heh heh heh…



"It’s just a shot away…"
I don’t mind syringes at all…

8

Hi There~

I know what you mean. I was on the pump for 2 years and I ended up hating it, the “pager” hanging off of me, the feeling of my body being “wounded” in a way, having the hole in me. I really like just the needle and lantus. My endocrinologist said that he had a few type 1 marathon runners who just used needles. So I have become an athlete. I recommend it. I may go back onthe pump for a while at some point soon but the needles and the freedom are heaven. AND I predict they will have that debiotech jewelpump (tubeless mini) out soon. Keep yo Head UP!

9

So do you feel you have more freedom of movement (exercise) on shots?

10

Interesting. Are you T1 or 2, do you only take lantus? No fast acting with meals? That’s the one area I found helpful on a pump was being able to run without a low. I can’t imagine trying to do a marathon with a tubed pump! That thing bouncing around for twenty some miles! Yikes.

11

I am type 1 and pumping humalog only. When I was taking shots, my basal was lantus, using humalog to bolus for meals or other adjustments. I am pretty-big into long distance cycling - which diabetes was the cause of me getting into it. I never had any issues with needle use + cycling, but I am rather worried about how this summer might play-out with the pump. My medtronic rep is also a cyclist and loves it, so we’ll see.

As an update to my story above, I changed my infusion site[now in side of abdomen] after work, bolused an adjustment and enough to counter my meal - and was back to normal range within about 3 hours.

I emailed my medtronic rep earlier in the day and he wants me to come see him on Friday to get some samples of other infusion set types. I’m not sure, the vacation that people suggested sounds like a possibility. I’d need to check supplies and maybe pickup some more Lantus first - as I am 100% humalog currently.

Thanks for the replies everyone.

12

I know one person who hated the pump, and stopped wearing it after giving it a good try. Everyone’s different. The most important issue is your comfort and convenience, and living every day with it. Personally, I love the pump, but it’s because I hated having to carry around paraphernalia, and often as not, would forget them anyway, and that was just the time friends would suggest going out to dinner. And I hated shooting up in restaurants, anyway. Still hate testing in restaurants. Also, I never had any problems with sites in 12 years. An occasional kinked cannula, but I figured that out from my BGs. Periodic no-delivery alarms, which are a pain, but I just put up with them.

So I’m a very different animal than you are, but nobody can say one is better than the other. You do what you need to!!!

13

We had a rough start when my son first went on the pump. His A1Cs were fine on shots, and we too had a similar climb in his A1C after starting the pump. It took a little while to get used to everything. I’d give it a few more months before you decide to go back to shots.

For us the benefits of the pump far outweigh the drawbacks. But to each his own.

We occasionally have site issues. We do have more lows. I still worry about scary highs if the site randomly decides to stop working. I still bring insulin and set changes if we are going to be far from home for a while. (There is always something to worry about, isn’t there?)

I’m dealing with a growing, active kid, so the freedom and flexibility of the pump are totally worth it. And although this disease is way too much of a burden to put on a kid (or an adult for that matter), I think the pump lets him feel like he is more in control. We can’t imagine going back to shots now.

Ultimately it is your decision. You’ll make the right one for you. :slight_smile: Good luck.

14

You should use shots or pump, whichever is most comfortable for you. But I think you are having a lot of trouble with infusion sets… too many failed sites. For now I would use the Rapid D or steel set (it is a needle) so once in, you should be getting your insulin. No kinked canulas or set problems. I think you do have to change it every two days instead of three. This will eliminate the problems with the sets so you can focus on pump settings and getting used to the pump in general. If you still want to give it a try.

15

Hey M! Yeah, this frustrating stuff is a buzz-kill, eh? I’ve had very similar issues. I am type 1 about 30 yrs. On pump (MiniMed Paradign) for 10 yrs now. I have waaaay too many issues with my sights. And some unusual random highs. I do change my sight every 2 days, that helped originally but then the prob started again. My Dr. changed my insulin from Humolog to Novolog & that helped too. Seems that every 5 months or so I have to change insulin type. I use the ones mentioned as well as Apidra (also fast acting).
I wear the pump (sights) in abdomen, upper buttocks, lower back, and on rare occasions the back of my upper arm - but only w/ one specific type of infusion set (Sure T). I’ve had too many issues w/ my sight so I don’t even wear the sensor. My Dr. agreed w/ this, worried about poss scar tissue developing.
My Dr. has mentioned that there can be other factors involved w/ these random highs. She (endocrin.) said that one possibility is the freshness of the insulin, was it a fresh bottle when used? And also whether or not insulin in the pump has been exposed to/changed from warm (and cold??) temperatures. In one e-mail she wrote "Are you trying to fill the syringe with less insulin so you use fresh insulin every 2 days or so?"
I agree that there is way too much hype about the pump and that it is definitely not all that was promised! I am frustrated & I’ve been w/ it for 10 yrs! But…I don’t wanna go back to 5-6 injections/day & I like that I can skip a meal every now & then. Its a tough decision.
I wish you all the best! Great topic btw!!!

16

I had very similar feelings to you when I started on the pump (6 years ago). I did not have a miraculous start! My A1c went up, I didn’t like always having something attached to me. I did rip it out (literally) in a bout of frustration and took about a month off then tried again. My endo made me commit to staying on the pump for one year. She said that it might take me that long to get used to it. I am still on the pump and I think that it is what is best for me right now, but I don’t know that I will stay on the pump forever. Someday, I would like to try switching back to shots for six months and see if I can maintain as good blood sugar levels.

Here are a few points to consider:
(1) the infusion set matters A LOT. I use the MM pump as well. They gave me 9mm Quicksets when I started and these cannulas were too long. I struggled with a lot of kinked cannulas. When I switched to 6mm Quicksets, the problem went away! Since then I switched to the Sure-T, which has a metal cannula. This is by far my favorite infusion set. I am amazed that I don’t feel the cannula at all and I find that insertion is (usually) much less painful. I also think that I have less scarring because I move the infusion set every two days (instead of three) – this is the recommendation with metal cannulas. The nice part is that I don’t need to use a new infusion set every 2 days, but I re-insert the same infusion set and tape it down. I get about 6 days out of each infusion set this way (I could get more, but change it to prevent infection). Minimed will not officially endorse this – I’m sure – but my doctor was OK with it and I haven’t had any infections doing this. Be sure to try the Sure-T when you get your samples. It certainly gets rid of the worry about kinked cannulas!

(2) the pump is only as good as the settings that are in it. I think that for my first few years of pumping, i was walking around with bad settings in my pump. The reason was not that I had a bad doctor or that I didn’t understand how my pump worked. The reason was because I did not test my blood sugar in a patterned way and I did not log my blood sugars to better be able to identify patterns. When I switched endos and got one that demanded detailed logging, I saw how she adjusted everything and how my blood sugars became amazingly better! I would recommend finding a way to log for at least a month. I hate logging, but see if you can find a way that works for you and commit to it for a month. Given that the pump memory can handle a lot of it, then you might not need to write much down, but you will need to be sure to test at regular intervals and analyze those patterns. The book “Pumping Insulin” has awesome explanations about how to make adjustments and you can also post your patterns here on TuDiabetes and members can help you analyze them. When I finally got the right settings on my pump, I found that I love the stability that it provides.

(3) I think that one thing that did improve over time was getting used to the physical presence of the pump. The tubing used to bother me, but now it is so normal that it is there. The reminder of diabetes used to bother me, but now I am happy that I don’t need to wear a watch. It took me a while to find a way to wear the pump so that I find it the least disruptive.

I would recommend giving the pump at least a few more months and devoting the time to figure out your settings. Some people do very well on shots and there are indeed many pros and cons to pumping. Do, however allow yourself to take a break from the pump at some point and go back to shots. It will help you compare how your blood sugars do and which method you prefer. The precision with which I can adjust my basals has really helped me to have stable blood sugars, which is why I have decided to stick with the pump for now!

17

Thanks, it’s good to hear I’m not the only the only one that had some issues adapting to the pump.



Following yesterday’s bad infusion site and high blood sugar levels, I dropped low before bed (55). I had a snack and took the following picture of my CGM history. Unfortunately, as I often do, I over-corrected the low and woke up in the mid-200s. Now I’m waiting to see if the pump can bolus me back to the normal range with this site being a day old. I bolused a corrective dose at about 6:30am and only had cottage cheese for breakfast. So far, the sugars aren’t coming down. I’m really hoping I didn’t burn out another site in 12 hours.



Here’s an attached image of how well everything worked once I changed sites last night. You can see the ineffective boluses earlier in the day.



18

Stubborn highs that won’t come down can also be a sign of basals being too low. Watch for patterns across days. My endo really looks at changes (not just highs and lows). If I go up from 80 to 120 one day and find another high at the same time another day, that can be evidence to change basals. The best way to test basals is to fast (start the basal test 4 hours after your last bolus or snack), but you can catch trends without fasting. I can’t fast right now because I am pregnant (yeah!)… so we identify patterns by watching trends over multiple days.

Usually it is recommended to fix basals first. But it can often seem that there are too many variables!

Overtreating lows is a REALLY common problem. I used to struggle with it a lot. Now I treat lows with shots of juice (I use a shot glass to make sure that I don’t drink too much). One shot is enough for me for a mild low (60-70), two shots for a lower low. I also use glucose tabs. I had to stop treating lows with chocolate, which used to be my favorite!

19

Do you often find yourself in situations where you don’t have any clothes on for a protracted period of time?

20

Speaking for myself , yes, I sleep nude. What I do is wear my pump inside a spibelt around my waist, pulled tight enough not to drift around, but not so tight it constricts. I put it on the edge of my hip towards my back as I sleep mainly on my stomach or side. Works for me.