Sacral neuromodulation (Interstim)

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So, I posted an update about my visit with my Urologist and her recommendation to reach out to a colorectal surgent about interstim options. I have done some more research and do seem to find any indication of if interstim can be used to treat both bowel and bladder incontinence together.

The other issue that I have with all of this is if it is going to stop the pain as well as what it will mean moving forward. I don't want another bandage-like I have been dealing with (Medication. And, if I am going to go with the interstim I need to know what life will look like with it.

All in all, I am going to be seeing my PCP on the 2nd and will be talking about all this with him and my physical therapist.

 

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The thing thats hardest to hear is that you are in pain
You can look up the threads on interstitial here but its urinary
Itapilot, znd mezza jarjar banks posted quite a bit and good results 24/7

 

[Archives1]

The thing thats hardest to hear is that you are in pain
You can look up the threads on interstitial here but its urinary
Itapilot, znd mezza jarjar banks posted quite a bit and good results 24/7

Thank you. The pain is the big deal for me. I have a lot of pain around my Ileocecal valve all the time and my physical therapist said it is likely due to surgery. After stuff moves through and into my large intestine then my whole gut hurts.

I am worried about the Interstim assessment because being dual incontinent. Also, I have read that it is painful to get put in and taken out. I am no wimp, but back when I was admitted for the two abscesses I had with diverticulitis in Dec 2018, a nurse removed a bellow catheter from my side where an abscess was draining. Yea, that hurt... A lot and this good Christian boy said some really bad words. So not looking forward to anything like that again.

Granted, I don't even know if I would be a good fit for it but I will see next month.

 

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I have had very good results with InterStim for over active bladder for years now, but I don't know anything about bowel use.

As far as pain is concerned, it has never "hurt" me. I had general anesthesia for every surgery. You have to qualify by having a temporary, external device first. If that helps you at all then you have the permanent one installed under the skin.

I do have constipation issues because of all the medications I have been on for a long time. My doctor told me to take the Miralax (or generic) laxative every day; one or more times per day if needed. If that fails, I take Milk of Magnesia. It's important to drink plenty of water.

 

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I have had 2 Interstim Implants. Neither worked for my OAB and I don’t believe it’s meant to help your bladder pain. It did not take any of my pain away. Botox to my bladder is the only thing that has worked to take my pain away. Unfortunately, it doesn’t always work. Had the last Botox injections in February, and the pain I am in is unbearable. Wish there was another option. Insurance will only cover the injections once every 3 months. The Urologist always gives me anesthesia for the Interstim Implants and the Botox injections so I don’t feel a thing. Only way to go, under anesthesia.

 

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I have had very good results with InterStim for over active bladder for years now, but I don't know anything about bowel use.

As far as pain is concerned, it has never "hurt" me. I had general anesthesia for every surgery. You have to qualify by having a temporary, external device first. If that helps you at all then you have the permanent one installed under the skin.

I do have constipation issues because of all the medications I have been on for a long time. My doctor told me to take the Miralax (or generic) laxative every day; one or more times per day if needed. If that fails, I take Milk of Magnesia. It's important to drink plenty of water.

Though I do worry about the pain from the implant and what it does, I really worry that nothing is being done about the pain I already am in.

The only other objection that I have is that it seems like they want to move forward with the implant if they saw any improvement. I am only 36 so the idea of them saying I will be okay with just a 50% improvement... Like no. I have had no improvements so far, even with everything from therapy and medication.

And, I don't want to have to go through with many procedures every few years for just a bit of relief.

 

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I am going through an Interstim evaluation now. There was no pain during the surgery as I was given general anesthesia. I’m not leaking anymore and the urgency has improved somewhat. I’m still hoping that the frequency with come down as I was averaging 10 times a day.

 

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My bladder pain is less since I had the Interstim surgery in November. I'm talking with my doctor about doing more Botox (last round was in August, and this is the longest I've gone without it in several years) but, despite still having bladder pain, I don't think it's bad enough to justify Botox yet. We may get there at some point.

I don't have significant bowel pain or bowel incontinence issues unless my UC is flaring, which I'm pretty sure the Interstim won't help with. I know it's commonly used for bowel incontinence, though, and I'd expect it to help at least somewhat with pain from other bowel issues.

I had the leads implanted without general anesthesia both times (test and permanent leads), and I did find it painful. It's over quickly, though (five minutes for the test leads, 30 minutes for the permanent because they had a hard time getting them in the right place). I wouldn't relish going through it again, but it was so worth it for the results I've gotten. They put me completely out for implanting the control box, and I had very little pain from that afterwards. I didn't need anything stronger than Tylenol for post-procedure pain.

My urologist told me that she feels it's important to implant the leads with the patient awake so that she can get feedback about what they're feeling. I can use the very lowest intensity settings on my controller (I'm usually at 0.4, for those who have it) which I understand means the leads are very close to the correct nerve. If I hadn't been awake, I don't think my results would have been as good, given the difficulty they had in getting the permanent lead in the right place. They started to put it on the left side, but I quit getting any sensation from the doctor putting electrical signals on it as she worked, so she ended up moving it to the right side.

 

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Tomorrow I have physical therapy and will be talking through Interstim and all the pros and cons. When I say that I have a lot of pain, right now it is around a seven with spikes where it hurts enough to bring tears to my eyes when I move the wrong way. And that is how I live every day. Once my large intestine starts doing anything I get pain that I cannot handle and I just sit on the couch in the fetal position until it passes. Tylenol just takes the edge off the spiking feeling.

After talking this all through with my mom she feels that I need look into this with caution. If the Interstim is not going to help me get off all the medication, stop having accidents, and stop the pain I am in then it might not be worth it. But again I have to talk it through with doctors and such.

Again, My main issue is both bowel and bladder incontinence with a lot of bowel pain throughout the whole bowel. Bladder spasms and lack of bladder control.

One thing is this until someone, a doctor, or another gives me a definitive answer as to what I have and why I have it we are just guessing on what to do. GI does not consider this to be an IBD, IBS issue. Yet they know that I have diverticulosis in my whole large intesten. So anytime I get backed up is a big issue with ending up with diverticulitis again. So I have to stay on medication to not end up that way. So... Don't know what the Interstim will do as I cannot control when I get the runs at all so.