Pouch leaks might be from SSRI anti-depressants and other drugs

I'm new to this forum but I've got a 14-year old K-pouch that I am so grateful to have that she's known as The Princess, Miss Pouch. I had an issue I've never seen mentioned on a continent ostomy 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 extraordinarily continent pouch began to leak once every few days -- spontaneously, without warning, just opening up suddenly to release gas or a ounce or so of output. Needless to say, I freaked out. A few weeks after the leaking began, I started to get really painful muscle-stitch type pain at the right side of my pouch (my pouch is on my right side) and 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. The K-pouch surgeons who have done my check-ups here in New York for years scoped me and said the pouch was structurally intact, looked perfect, not inflamed or infected -- the only idea they came up with was adhesions, which would not have appeared so suddenly, and might have explained the pain but not the random leaking.

I am a neuroscientist and after a few months of anguish and terror I realized that the problem had started a few months after I started taking an SSRI anti-depressant (this category includes Paxil, Prozac, Zoloft and many of the most widely-prescribed ADs). SSRI stands for "selective serotonin re-uptake inhibitor," and about 85-90% of the serotonin in the body is actually at work in the gastrointestinal tract. You actually have two nervous systems, the central and the enteric  -- the enteric nervous system regulates your gut, and serotonin is its major neurotransmitter. Drugs that increase serotonergic activity will affect both the central and the enteric nervous systems.

Thankfully, it was time to taper off the Paxil and my psychiatrist agreed that it could indeed be the culprit...and it was. The problem dissipated as the dose decreased and once I stopped the Paxil, the problem was gone. (Being a 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.) Melantonin or valerian root, taken on a regular basis, can also increase serotonin levels in the gut.

I now know that I am extraordinarily sensitive to changes in my gut serotonin levels, and most people will NOT be as affected as I was by the SSRI. However, if you have ever had the problem I've described, PLEASE do NOT stop taking your anti-depressant! First, check with your pouch doctor to determine whether there might be an infection (pouchitis, c.diff) or structural problem (like valve slippage). If nothing is found to be wrong on those fronts, work with the doctor who prescribes your anti-depressant to determine whether an SSRI (or melatonin, or valerian root) is likely to be causing the problem. I repeat: please please do NOT just stop taking your anti-depressants. If you have ruled out other possibilities and think that the SSRI is the problem, work with your doctor to slowly reduce the dose in order to avoid very, very unpleasant withdrawal effects. 

As a neuroscientist with full access to medical journals, I can tell you that, to date, there are no published studies on the connection between continent ostomy issues and drugs that increase serotonergic tone, and its certainly not part of the gastroenterology canon. Many colorectal surgeons think of the gut in predominantly mechanical terms and forget about the neurological and biochemical components of the picture.

As I said earlier, I've never seen a post anywhere on leaks and pain similar to what I had, or to serotonin-related problems, although I'll bet its not uncommon.  I'd be interested in hearing from anyone who has had leak problems while on an SSRI or other drug that increases serotonergic tone.

And thanks to this forum for letting me post this long but hopefully useful story.

sd

Original Post

Wow! Amazing. SLDRX,

Thank you so much for posting this.

I am sure that more than one k poucher is on some sort of SSRI med, secondly a lot of us have unexplained pain or leakage and this just might put pay to their problems.

I once tried to compile a list of possible pouch problems and complications along with possible fixes...this would be wonderful to add to that list.

You rock!

Sharon

Wow- so interesting! I am on Lexapro and take Melatonin. I am having leakage problems and slight pain- very similar to what you mention. I think mine could be a slight valve slippage or my pouch position but your post certainly could help others when leaking is a 'mystery'. Thanks so much! 

SLDRX,

Thank you for referring me to this old post. When I first started Prozac my doctor told me to look out for gut symptoms. I didn’t feel a difference until the dosage was increased. My output became consistently liquid- which was fine considering the mental health benefits. Now I wonder if this lower right pain and difficulty intubating could be connected. 

I’m traveling to get scoped by my surgeon next week. If he doesn’t find anything, I’m going to ask my doctor to taper me off the Prozac so I can see if that helps. 

Thanks!

The symptoms I had, as noted above, were both lower right-side pain (around the bottom of the pouch)  and serious random leaking of output. My doctor at first thought it was adhesions, but that could not explain the leaking. Shavon, you didn't mention leaking so this could be a possibility.

If you're going to try tapering, its really important to do so very slowly and gradually. I am super-sensitive to these drugs and was on a small dose of Paxil so I asked my doctor for a "suspension" formula (liquid form) and used a syringe (no needle, ask your pharmacist for one with fractions of an mL and do a mg-to-mL conversion) to smooth out the taper. I don't know whether Prozac comes in suspension form but you can also get some empty gelatin capsules and tap half the contents of a pill into an empty one to halve a dose. Tapering slowly is really important -- you don't want to trigger more depression and I found my symptoms subsiding as I reduced the dose.

Some surgeons, including Dr Pokala Kiran, have heard about this problem with SSRIs but there is still nothing about it in the medical literature. My then-doctors Jeff Milsom and Toyooki Sonoda had never heard of it and poo-poo'd me when I told them what I'd concluded -- and I am a real-live neuroscientist with a PhD and fat credentials and everything -- so if your doctors don't "get" that this may be the problem, tell them the following theory behind the findings:  its well-established that  the enteric nervous system (GI, gut) expresses lots of serotonin receptors. As SSRIs increase the availability of serotonin in both the central AND enteric nervous system, 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 the pain occur where muscle fibers are getting signals to contract and release as a function of gut motility which is no longer appropriate given their current location.

I'm definitely feeling the loss that I can't take SSRIs -- they were the most effective drug for me and I can't even handle a tiny dose. The only antidepressant that doesn't affect the serotonin system is Wellbutrin, and for me Wellbutrin has helped when I needed it but not as much as the SSRIs. So its worth exhausting other possibilities about any pain and leaking so that SSRIs remain an option if you need them.

SLDRX,

Would you please give me permission to repost your conclusions on a few other K pouch/BCIR sites? I believe that what you have discovered needs to more widely read and understood in our very tiny community...

Or you could repost it in the BCIR and the Poucherlifestyle facebook pages.

Thanks for your diligence.

Sharon

I'm not on Facebook but yes it would be great if you could get this info could get out to more people, you definitely have my permission. I am assuming you're referring to the first post (5/12/16) and you could add the second (today's) if you don't think that's too much for people to read. I could edit and condense them if you think so -- let me know, I'll get that done over the weekend.

I haven’t mentioned leaking because I don’t know what is normal versus abnormal leaking. I soak through most of the covers I’ve tried and it has increased recently.  It still might be considered typical  

I have heard good things about Wellbutrin so I will talk to my doctor about tapering and switching.  I think I’d rather deal with depression over this random pain and “popcorn gut”  

 

Shavon, if you don't have to switch from an SSRI that's working for you -- and give up those very effective SSRIs forever! -- I'd rather that you sort thru the problem step by step to make sure that the SSRI really IS  the problem and not something else. Even if what you have is "normal" leaking that you'll have to live with (and not caused by the SSRI), what I'm going to suggest might help.

Please collect some "data" for your surgeon -- that will help him figure out what's going on. Make a chart, keep records for each day:

How many times a day do you empty your pouch? What times of day do you empty, in relation to your meals?

How many times a day do you change your patch ONLY because you've soaked through? Do you always soak thru or just at certain times or just after drinking a lot of liquid?

Is it clear liquid or colored like what you last drank, like coffee? Is the liquid coming out a little at a time over a few hours or is it coming out in random streams?

How much liquid are you drinking before the leaks? is it all at once (like 6-8 oz in a few minutes?) or is it spread out over a few hours? Is it carbonated drinks or not?

How much solid waste is coming out?

What kind of pain is it and where do you feel it? Does it happen after you eat, after you intubate, or randomly?

I know this sounds weird but you could take pictures of your patch when you've gotten solid matter leaking out, so the surgeon can see how much it is.

I changed my patch a few extra times a day for the first few years, in addition to changing it when I emptied. That is normal if your pouch is "active" and produces a lot of watery mucous.

Giving your surgeon this information will help him figure out what's going on. Don't give up on the SSRIs until you REALLY know what's going on for sure.

Thanks Sldrx,

If you I could sort of cut and paste the article in a private continent pouch group that might help a lot of people...I will get to it.

Sharon

if not, PM me with a synthesis that you find acceptable and I will publish that online on my poucherlifestyle page and on a few others.

 

sldrx

 although I don’t have the same problem I greatly appreciate your analysis. So good to understand how the G.I. system operates in order to better manage the K pouch.  thanks for your scientific approach and reporting.  i’m so sorry you are suffering from depression as it can be such a dibilitating disease.  hope all works out ok w different meds and approaches.  janet

Sldrx,

Thanks for your insight... I have already gotten reactions to your article and we are sending it to Dr Rheneke at Palms of Pasadena ... the surgeon who does the BCIR... he will take your research seriously.

I would sort of like you to forward it yourself if at all possible  (so that you can get the credit).

Sharon 

Thanks, Sharon. Could you send me his contact info in a private message? I am assuming you are a patient of his? -- just asking so I can introduce myself to him properly. It would be ideal if one of "our" surgeons who had seen this in his practice would write it up for publication. I'll assist with that in any way that I can.

You aren't a member of facebook are you?

There is a QLA (Quality Life Association) site that was started 30+ yrs ago for all internal pouchers and BCIRs...Dr. Rehneke (sp?) can be contacted through them or send any and all info to:

327 S US-27, # 417
Clermont, Florida
Call +1 352-394-4912
w.qla-ostomy.org
Ask to speak with Dr Rehneke or Susan Kay, his assistant and introduce yourself...they are incredibly open and friendly.
Sharon

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.

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