Groundbreaking Study to Treat IBD: use of Sacral Nerve Stimulation

Wow!  This would be so great for current and future sufferers of Crohn's and UC!  I hope it works.  Wonder what the side effects are?  Guess I'll actually click the link!

Just spoke to my doc about this, NYU isn’t a participant but she did say she’s heard of it and it’s quite interesting. I’m thinking about looking into it more.

If I recall correctly from the article, they are looking for new sites. it would make sense, then to have them look into it. Jan

Do you have a jpouch? I saw there’s actually a trial site in my city, but it looks like having a proctocolectomy makes you ineligible.

I relooked at the website, below:

Who is eligible for the trial?

Patients who have active disease — We're enrolling patients with both Crohn's disease and ulcerative colitis between the age of 18 and 75.

Can't answer your question but can understand why you would think having the J would exclude one.  It would be good to clarify, as well as clarify whether pouchitis would qualify somebody.

BTW, I have a K pouch and in no need of getting a SNS implant.  Merely posted info as I am excited that anybody with IBD could avoid surgery.  

Do you have complications with the J, such as pouchitis?  Be well, Jan

would it help us with a j-pouch who still have inflammation such as pouchitis or inflammation in the upper afferent limb?

I inquired about the trial and was initially told that it excluded those who have had a proctocolectomy. Just last week they called me back to tell me it now includes those with a J-Pouch! I'm not 100% approved yet but I'm hopeful this is something I'll be able to try. Thanks for the info, Jan, and keep us updated how it works for you. I'll do the same if I'm able to get it done!

Thanks for clarifying that J-pouchers are included.  I hope you get in and more so that it helps.  (Makes me feel that study is real with your inclusion.)

Don't recall reading if it is a blind study with placebo, although assume so.  Do you happen to know?  As a K-poucher I have no reason for the SNS.  Did get pouchitis once in eight years, which is merely a nuisance.   Got K after woefully too many years of pouchitis with J.

Be well, Jan

I look forward to hearing more about this.  I'm so glad members of this group are (potentially) participating! 

I got into the study and the device is being implanted Friday! Will keep you all updated on results.

Jan, they didn’t mention it being a blind study. I can ask at my next appointment.

So glad you got into the study. Yes, please report back results, and whether it is blind/placebo. Be well, Jan.

It’s unlikely to be a blinded study. The use of sham surgery as a placebo is at best unfashionable and at worst unethical. One way a treatment like this could potentially be blinded is with a crossover design, where the device is turned off for a period of time, as the control, for all participants, and is turned on at other times.

Surgery went well and I’m at home with minimal pain and restrictions.

I don’t think there’s a way for this to be a blind study - you definitely feel when it is sending electrical pulses.

thanks for the update.  did they tell you if one gets used to the electrical pulses? so excited for your possibility for improved health.  jan

It has been only a few days and I don’t notice it all the time while it’s running. It also depends on if I’m at rest or in a certain position whether or not I notice it more. It’s certainly not painful; I’d say more a slightly annoying sensation at worst.

Iholdem how is your device working? Has it helped you control your BMs?

Yes, I am curious as well!

Hi all, I’m at about the 2-month mark. The research liaison said patients tend to notice results around 3 months, and clinically they tend to see results around 6 months.

For me, I wouldn’t say my BMs were out of control, but my doctor was concerned about the amount of inflammation seen during my scope. So I have maybe noticed a marginal improvement, but there’s various lifestyle/diet/supplement changes I can do to affect that too. It has certainly not gotten any worse.

One encouraging concrete result has been my fecal calprotectin coming down. Baseline was taken before surgery at 283, and my most recent result showed 183 (0-120 being normal).

I have a scope next month and I’ll update you all on those results when I receive them.

so I have a redone jpouch since 2015 but have some minor incontinence. My GI at Cleveland Clinic wants me to see a DR Anna Spivak there who is doing a similar device for leakage . I havent made an appt yet but very curious .