This has been a long time coming for me. I’m really nervous and excited to see if it works. I have a love hate relationship with diapers and my need for them. I would very much like to have some control back when I pee and poop. I’ve read and heard of many different out comes with this procedure.
Any tips going into it? Will I need a diaper once the interstim is in? What can I do after the initial surgery? How do I shower?
Have you had the test procedure yet? There are two different tests they can do; one of just for a few days, and involves temporary leads going into your lower back/upper buttocks (right above your tailbone). The other is a couple of weeks in duration, but involved the permanent leads. In both cases, the stimulator box is outside the body.
I had the short procedure. It went in on a Tuesday and came out on Friday. I had to do prone baths during that time, and it was a nuisance that the bandages Kerrie coming lose so I had to keep taping then back down. The box was in a little fanny pack that was small enough to wear under my clothes.
I had the permanent device implanted just before Thanksgiving, so it’s pretty new for me. So far it seems good. I’m still having some urgency, but I haven’t had a large accident since the surgery. A couple of times I’ve leaked a few ounces, but not my usual incontinence issues that involve my entire bladder.
I don’t know yet if I’ll be able to quit wearing diapers, given that I’m still having bouts of urgency and spasms most days. I’m hoping that I can get to where I don’t have to wear a diaper as long as there’s a nearby restroom, though, which would keep me from being to wear most of the time. Alternately, I may be able to switch to some of the premium cloth diapers like Threaded Armor or Ecoables, which will be far more convenient if I’m only wetting once or twice a month.
I hope your surgery goes well!
thank you for your reply. I have not had the test phase yet. They gave me two dates roughly two weeks a part. I’m aware of the no showers which will be hard for two plus weeks.
it’s good to know you have seen improvement to the point their may be a day when you don’t need diapers. That’s my goal as well. I don’t have an urgency issue. Rather the opposite. I never feel like I have to pee. I just start peeing without notice. Bowels i stilll get a little warning most of the time.
I’m going in with the assumption I’ll still need some sort if protection post surgery most likely in the way of a diaper but any improvement is a win right?!
For me im fine with wearing and using my diaper as there are no side effects and no emergency room visits if an implanted device fails, after 6 years of being diapered 24/7 diapers are simply apart of my daily life. Hope all goes well and you regain your control
My understanding is that you can shower with the longer test, since it’s the permanent leads that are implanted. After my surgery, my doctor told me to keep showers short and try not to let the water hit the area of the incisions, but at least I could shower! That lasted until the bandages came off 8 days after surgery.
In any event, check with your doctor. He or she may have different advice.
I find that diapers do have a lot of side effects. They’re hot, sweaty, uncomfortable, and get lumpy after a few hours. They’re expensive, cause rashes, take a lot of time to manage, and force me to carry supplies with me. If the Interstim fails, it’s going to be another surgery, and even without a failure it will require outpatient surgery every 5-10 years to replace the battery. A failure is unlikely to result in anything more than an early replacement and a few weeks in diapers until the surgery can get scheduled. I’m very happy with my choice, but not everyone will make the same choice I did.
One thing that’s nice about the Interstim is that my insurance paid 100% of the cost. They pay zero towards the cost of diapers, which runs over a thousand dollars a year. I’ve always found it odd and unfair that adult diapers aren’t covered by insurance.
I’m very nervous about having the surgery as I don’t know what to expect. I’m okay with using diapers and agree their really isn’t any side effects.
I appreciate the kind words and support.
My gastroenterologist ordered an MRI. It’s not scheduled until mid-January, but I’m getting my first taste of scheduling an MRI with metal embedded in my body. The version of the Interstim I have is rated for 1.5T MRIs, but not the newer 3.0T. I talked with the MRI tech, and it should all be fine, but she has to find out if the antenna coil they typically use in this MRI procedure is ok.
All concerns that I have. My urologist said I shouldn’t have any issues with any future testing that should or could arise in the future.
question- you said your still wearing diapers daily, is that due to continue leaking and or accidents or for safety and being cautious? I’m really hoping to no longer need to wear diapers or any form of protection after surgery.
I’ve had only one leak since my surgery, and that was when I was out Christmas shopping and couldn’t find a store with an open restroom - that’s not common for me. I’m going to keep wearing diapers until the first of the year, then decide to switch to something else or go back to regular underwear. I’m still worried that I’m having some episodes of urgency, but they don’t seem to be leading to leaks.
One thing I’ve thought about it switching to Threaded Armor or Ecoables cloth diapers. I haven’t tried them because of the logistics of dealing with wet cloth diapers at work several times a week, but if my incontinence episodes are very infrequent then the game is much less. If I have to bag up and take home a wet cloth diaper once a month, it’s not the end of the world the worst party is that the things are shockingly expensive $50 to $65 each.
I’m still hoping to be completely done with diapers, but we’ll seem
overall it sounds like you’ve had good success. What was your incontinence like prior to surgery? I don’t have any feeling of my bladder or when I need to urinate. My bowels will occasionally empty on their own with little to no notice as well.
My incontinence was a lot different from yours. I have interstitial cystitis, so I often have bladder pain, and this leads to spasms and urgency. The interstitial cystitis varies - sometimes it’s flaring and sometimes it’s not. When is flaring, I’ll have accidents most days, but when it’s not flaring I sometimes go a week without an accident, and have gone as long as two weeks. Four weeks with only one leak is better than I’ve done in a long time.
My ulcerative colitis used to cause bowel accidents, but for several years now it’s been causing proximal constipation instead, so it’s been a very long time since I’ve had to deal with bowel incontinence.
Very different indeed. I’m so nervous about all this. I’m super afraid I’ll still be in diapers after surgery. The drs said they hope it fixes the issue but their is a chance it will just improve me situation. Fewer accidents and less leakage.
Any improvement is still an improvement. I’ve talked with a couple of other people who’ve had the Interstim put in, and both of them have been able to quit wearing diapers. I might still be diapers for times that restrooms are unavailable, but I think I’ll be able to quit wearing them day to day. Worst case is that I’ll be able to justify switching to cloth pullups without having to deal with a lot of inconveniene, since they’ll stay dry most of the time.
only time will tell at this point. I appreciate the conversation. Everything I’ve read in states this is more of OAB suffers. I haven’t been diagnosed with OAB. They don’t know what is causing the incontinence so they put Urinary incontinence without sensory awareness in my charts.
Hi Ehorton, we’ve chatted a bit about this on PM, but I thought I’d post a little here publicly.
I was diagnosed with OAB 2(?) years ago or so. I didn’t have much leakage…but what I did have was annoying and stressful. I like wearing diapers, don’t get me wrong, but needing them especially at times like family vacations, trips, etc. is really really annoying and stressful.
I got the medtronic interstim implant, the new one that is MRI compatible, with a permanent non-rechargable battery device that lasts 5 years.
Mine was done in 2 procedures, both that involved general anesthesia, but I understand that sometimes the process is done in 3. My surgeon said that he thought the first was superfluous.
The first procedure is arguably the most invasive and takes the longest. This is the placement of the permanent lead. “Permanent” can seem a little misleading because at the close of this first procedure, you end up with a wire sticking out of your back. In my case, it was a wire with a suture wrapped around it and then through my skin right above the wound. However, the opposite internal end of the lead stays in the exact place, even if you end up getting the permanent controller implanted.
After the first procedure, I had an external device attached to the lead that was coming out of my back. This device was controlled by a Samsung cell phone – but only to change the amplitude or “program” of the installed lead.
The medtronic tech was present at both procedures and he gave me his cell phone number so I could call or text for info and help. The instructions he gave me were to turn up the amplitude until I could just feel the flutter of the device in my saddle area. Changing the program modes moved the location of that flutter sensation. I chose the program that the tech initially chose although I did sample all the other ones. The mode they had me on when I came out of surgery produced the most sensation the furthest forward in my saddle. Interestingly enough, one of the programs yielded sensation that was in my upper buttocks area! It varied quite wildly.
In any case, they said that you want to “Just” feel it and that over time, you would come to not notice at all. That proved correct for me.
Other than the annoying external belt thing, I pretty rapidly grew to not even notice it was there.
The surgeon and representative said that the effects should be immediate and obvious. They were looking for very significant changes before doing the permanent install. It took a couple days for me…and it took me turning up the amplitude a few times. But eventually, I found the device to radically shift both my urgency and frequency – and reduce leakage episodes. I went from peeing like 15x per day and rather small amounts (~100ml or so) to peeing 7-8x per day and volumes of like ~200/250 or so. I still have incontinence at night sometimes, but it is predictable to when I use any kind of sleep aid or pain killer. That works for me.
Since I had great results, they installed the permanent transmitter 2 weeks later. I ended up with a pretty long 3 inch scar on my upper buttocks…they routed the lead that was hooked up to the external device, over through my skin tunnel to the side where the permanent battery was placed. I had to get an x-ray after to make sure everything was in the right place.
Honestly, the worst part was the two weeks in between. The wound site of the trial installation becomes very itchy and the Tegaderm peels up. I ended up having my wife who is a nurse change the dressing a few times. If I didn’t have access to her, I would’ve gone back into the clinic a couple times to have them do it.
All in all, I would do it again. Pain was minimal. Discomfort has been worth it. Inconvenience has been worth it. Cost was negligent because I’m with Kaiser HMO. I would 100% recommend, with the caveat that it may not work for everyone. For me, it’s been a lifesaver.
My test procedure was quite a bit different. I had temporary leads placed, which was done in the doctor’s office with local anesthesia. These came out through the skin right above my spine, and connected to an external device that let me control only the amplitude (no Samsung phone for that one). I had that for the days, them the leads and everything were removed. My response wasn’t as strong as yours, which is perhaps the difference between the temporary and permanent leads, or maybe in lead placement since my temporary ones weren’t done under X-ray guidance. Still, after the the days, I’d seen enough improvement to decide on the permanent placement.
That one started under local, where they inserted the leads and asked for feedback from me on what I was feeling. They started on the left side of my back, but they couldn’t get the sensations they wanted so they switched to the right side, so I got to go through the discomfort of having the wires of into me twice. Once they had the leads placed, they put me out and ran the lead over to my left your buttock where they placed the device.
My Medtronic rep was only there for the second procedure, but she gave me an her contact information in case I had trouble. My permanent device has the Samsung phone and the little blue and white control box, and I’m sure it’s identical to yours. I can’t tell any significant difference in the programs, but they all seem to work equally well, and at very low intensity (0.4 to 0.5).
It was an uncomfortable procedure, but not horrible, and the results are completely worth it for me.
after 2 years i actually had mine removed. it really didnt help me much.
Can I ask what life was like prior and what life’s like now?