Following is an update of my 2016 post regarding possible issues for pouch patients taking SSRI antidepressants (eg Paxil, Prozac, Zoloft, etc.). Feel free to link to this post if you'd like to spread the information to other pouch groups. Sorry that this takes up a lot of room but there was a lot of response to the original post and I wanted to clarify a few very important points.
Possible issues for continent ostomies and other pouches caused by SSRI antidepressants
I have a continent ostomy, a Kock pouch built in 2002 by the late Vic Fazio at the Cleveland Clinic, that I am so grateful for that she's known as The Princess, Miss Pouch. I once had an issue I've never seen mentioned on a forum although I'll bet its not uncommon at all. Fortunately I have the solution to the problem and I want to pass it on.
A few years ago, my perfectly continent pouch began to leak every couple of days —spontaneously releasing a lot of gas or one or two milliliters of solid-waste output at a time at random intervals, but then progressing to flows of over five milliliters at a time as if the valve had just completely opened. A few weeks after the leaking began, I started to get sudden and progressively more excruciating muscle-stitch type pain at the right side of my pouch (my pouch is on my right side) as well as soreness when I intubated, as if the area deep in my gut around the pouch was inflamed.
What I ate or drank made no difference. I never had any fatigue, muscle aches, fever or other signs of infection — those symptoms would suggest pouchitis, but pouchitis doesn’t cause valve leakage.
My colorectal surgeon did a pouchoscopy and said The Princess was structurally intact, the valve looked perfect and there was no sign of infection or inflammation. He didn’t think it was adhesions as they don’t appear so suddenly, and while adhesions might have explained the pain, they would not cause leaking. But he didn’t have any other ideas about what could be happening. My ob/gyn did a pelvic ultrasound, but my reproductive system was fine.
It occurred to me that the problem had begun a few months after I started taking an SSRI, the category of antidepressants which includes Paxil, Prozac, Zoloft and most of the other most widely-prescribed ADs. SSRI stands for "selective serotonin re-uptake inhibitor," and as a neuroscientist I knew that only 10-to15% of the serotonin in the body is at work in the brain and spinal cord — the other 85-90% is in the enteric nervous system, which governs the gastrointestinal tract. Serotonin is one of the most important neurotransmitters in the enteric nervous system, essential for intestinal motility. SSRIs increase the availability of serotonin in both nervous systems.
Fortunately, it was time to taper off the Paxil anyway and my psychiatrist agreed that it could indeed be the culprit...and it was. The problem dissipated as my dose decreased and once I stopped the Paxil completely, the problem was gone. (Being a research scientist by trade, I was compelled to test the theory a few times, and yes, taking even a small dose of Paxil resulted within a few days in the pouch getting leaky.) Melatonin or valerian root, taken in large enough amounts on a regular basis, can also increase serotonin levels in the both brain and gut.
I now know that my pouch is extraordinarily sensitive to changes in my serotonin levels. Most people will not be as affected as I was by an SSRI. If you are having the symptoms I've described, PLEASE DO NOT STOP TAKING YOUR ANTI-DEPRESSANT! Suddenly stopping your anti-depressant is very likely to cause cause potentially DANGEROUS and VERY UNPLEASANT WITHDRAWAL SYMPTOMS, including severe exacerbation of depression. Going on and off an antidepressant just to “see” whether that might be the problem will not work, and is definitely inadvisable. If the SSRI is the problem, you must taper off very slowly — some tips and suggestions follow later in this post — but first figure out whether the SSRI should be considered a suspect:
(1) Make an appointment with your pouch doctor. While you wait for your appointment date, make daily notes for him about when and how much output you’re leaking, and when and where you’re having pain. He can determine whether there might be a structural problem, like valve slippage or a fistula, which are very well-established causes of valve leakage.
(2) If your pouch doctor has absolutely ruled out all the established possibilities, tell him that you’re taking an SSRI and have heard that the increase in serotonin in the gut might account for your symptoms. Many pouch doctors have heard about this informally (‘anecdotal information’) but there have not been any studies published about it in the peer-reviewed medical journals, so he may be rightfully skeptical. You can show him the “proposed mechanism” (below) which explains in very simple terms how the SSRI might be causing those symptoms to see whether that makes sense to him given what he’s observed. I am a neuroscientist, not a gastroenterologist or colorectal surgeon; the terms used are descriptive for the purposes of this post, not explicit or clinical.
(3) The “proposed mechanism” is this: as SSRIs increase the availability of serotonin in both the central and enteric nervous systems, the neurons in our "displaced" intestinal tissue are getting signals which no longer make sense, given that the tissue is now pouch and valve. The leaking and pain occur where muscle fibers involved in gut motility are getting signals to contract and release which are no longer appropriate given their current placement, causing twisting pain and intermittent valve malfunction.
(4) If your pouch doctor thinks the SSRI could be the culprit, please work closely with the doctor who prescribes your anti-depressant. It may be a bad time for you to go off the drug or reduce the dose, for any one of a thousand reasons. Please do not endanger your mental health by acting rashly on this matter. If your pouch symptoms are not severe and you can tolerate them for a while longer, consider staying with the drug until the time is right for you to come off it. But if the choice you’re making — hopefully with the support of both doctors — is to taper off the drug, please take your time and do it very slowly.
How to taper off an SSRI:
I found my symptoms subsiding as I reduced my doses but — I repeat! — it is extremely important to TAPER YOUR DOSES VERY SLOWLY in order to avoid withdrawal effects. I am super-sensitive to these drugs and was on a very small dose of Paxil to start so I asked my doctor to prescribe the "suspension" formula (liquid form) and used a syringe to smooth out the taper, step by step. If you can get a suspension formula, buy a syringe (no needle needed) on Amazon ($5 - $8 for a bunch) or ask your pharmacist for one with fractions of an mL. Ask your pharmacist for the mg-to-mL conversion of the dose for your drug from tablet or capsule (mg) to liquid form (mL) — with Paxil, for example, 1 mg = 0.5 mL. You can also buy empty gelatin capsules on Amazon (single-zero or smallest available size) and tap half the contents of a capsule into an empty one to halve a dose. Using a pill cutter for tablets can work but its a lot less precise, and if you’re taking smaller and smaller doses, you’ll want to be as precise as possible.
I am hoping that one of our community of respected pouch surgeons will take the time to document a case involving adverse response to SSRIs for the peer-reviewed medical journals, so that it will be one of the possibilities all pouch surgeons consider when a patient presents with these symptoms.
Until that time, its up to us to post on bulletin boards and in forums to spread the word. And thanks to this forum for letting me post this long but hopefully useful story.