Bowel issues after anal cancer treatment: Had the interstim procedure?

You got it. I stay close to the bathroom every morning. A gastroenterologist prescribed amitriptyln . Off use. It seemed to help for awhile. but then nothing and my gp said it could cause memory problems. So that's where I am at. My surgeon that followed my treatment (no surgery) referred me to the Cleveland Clinic but I live in the Chicago area. Thanks for the info.

I’ve had bowel incontinence for years. Had my Interstim put in in January after what we thought was a really successful trial. I’m afraid it hasn’t really helped. I have cycled through many many settings and the only thing I can say is that it has made me even more aware of how little time (seconds) I have to get to the bathroom on time. I am currently on a program where the device is turned off for 23 hours and then comes on once a day - no real difference. The thing that seems to be helping the most is trying to make my bowels VERY regular - frustrating problem to be sure.
Providers are kind, but they always say the same things “don’t give up” “everyone is different” “we have other programs to try” . . .

@currimom
I am having the same experience. I had a successful trial (peeing about every 3 hrs is good enough!) mid-October and have tried 5? 6? Programs since then. I have peed every hour day & night, thrown up, had diarrhea — miserable. Then I end up retaining, having to be catheterized, get a UTI, and have 10 days of antibiotics before we can try a new program. Medtronic rep told me retention patients may take a year to find the solution. I, too, am very overwhelmed and discouraged. Hard to understand how the trial could be so good and the real thing so problematic. I would love to hear from anyone who struggled but did eventually get it right.

I am also interested in hyperbaric oxygen treatment (in addition).

I wish the best of luck to all of you. However, the Medtronic interstim nerve stimulator for bowel incontinince is the biggest mistake I think I’ve made. So after dealing with bowel incontinence for over 10 years, all I can say is that I was more than excited to hear about this device!
I feel like I’ve been scammed. The doctor, the rep, and even Medtronic hasn’t been helpful at all. I’m seriously thinking of removal, but NOW I’m afraid. I can only blame myself, but I will tell anyone who is considering it, please think and research, think and research, think and research.

I had the interstim procedure but it did not work for me. Removal was easy. I still have problems, sometimes I will take an antidiarrheal in the morning and a citracal in the evening. Sometimes it works.

I’ve also has the interstim implanted. I don’t think it is the answer, that it was supposed to be. Possibly it helps a little. I wouldn’t recommend it, but also see no reason to have it removed. My only other option is a total colectomy with apr surgery. No thank you.

I'm sorry about the other option. I guess I should count my blessings.

@geriincary this post treatment status is difficult at best, it’s okay to acknowledge that. I am blessed in many other ways, but this is not one of them. Warmest regards!

Hi, Debbie Downer here🤣. During the trial. I thought I had struck gold. But since then it’s been useless. I think I made a terrible mistake. I’m nine months in with the intrstim bowel stimulator. Feels like I’ve been sent up the creek without a paddle. But I know that it doesn’t work for everyone, just call me everyone. Good luck to everyone who’s tried it or trying it. I definitely wish you the best. But I don’t really have anything good to say about it.

At least you were trying your best to address this problem. Don't give up. My best to you.