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

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:

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.

i've been prescribed Cymbalta for my fibromyalgia and am wondering if should even attempt taking it.  if anybody has been able to tolerate a SSRI i would appreciate knowing what dosage you take.  i take lyrica now and it definitely helps, but the thought that i could get more relief is enticing enough to make me attempt it.   if i do try it i'll report back.   thanks for the excellent right up so that my pcp will believe me!  janet

Janet, please bear in mind that not everyone with a pouch is going to have this reaction. While my very wonderful surgeon Dr Kiran knew of many cases involving SSRIs, Drs Milsom and Sonoda were absolutely clueless at the time about what was wrong with me and they had both dealt with plenty of pouches working under Vic Fazio at the Cleveland Clinic. So we don't know how common my reaction is in the continent ostomy population. I am particularly sensitive to SSRIs (confirmed thru genetic testing as well as experience) and needed only  low doses to get results for depression. Considering those two factors, its certainly possible that you will be able to take Cymbalta without any problems. The worst part for me was that for months I did not know know why my pouch was leaking and why I was having pain but if you were on the drug and had unfamiliar pain near your pouch or if your pouch leaked even one time, you would know what the problem was and could lower the dose or taper off the drug completely, as I needed to do. If the risk sounds reasonable, you might want to try it. Symptoms will be reduced with a reduction in dose, but remember, you would need to taper off the drug, you can't just stop it cold-turkey.

sldrx

thanks sldrx!  if i start it will be low dosage as can take it in tandem w the lyrica.  i'm so thankful for knowing about this possible symptom beforehand.  i've had woefully too many drug reactions so am turned into possible effects, but hopefully not to the extent that my mind plays tricks.

what dosage were you at?  perhaps the dosing is different for fibro.

thanks and be well, janet

The drug you are considering is not a classic SSRI so comparing dosages is not going to be useful. Your doc will adjust the dose for your fibro and that's the dose you'll need to be able to tolerate (and you'll probably be just fine). I was not able to tolerate even tiny doses of the liquid form of Paxil (called a suspension) which would be the equivalent of 2 mg tablet -- that's well below the therapeutic dosage of this drug for depression. But all this may have no bearing on your case at all! In my case (at a higher dose), the leaking came first before any pain. Leaking is not something you could induce by your mind playing "tricks" so unless you get real pouch pain, you are probably safe if you don't leak. And if you do leak, see if a lower dose will work, etc. Best of luck!

I finally tapered off my Prozac and I am feeling much better. I stayed in therapy through most of my taper just to make sure I was safe. Now I can wait longer to empty my pouch without pain and I’m no longer soaking through pads. I have increased the frequency of ketamine infusions so I’m sure that is helping with my pain and mood.  I’m still exhausted and struggle with insomnia but I’ll take that over pain. Hopefully I’ll be fine without the SSRI and I can continue to tolerate future pouch symptoms. 

thanks so much for your input.  you are right, the mind couldn't get a pouch to leak!  i'll try it, as the fibro pain is exhausting, and to no surprise that can lead to depression.  i hope both of you balance out ok without the meds.  a tough situation to be in.  i'll take pain over depression any day.  peace, janet

This post is 3 years old but I am so grateful to see it. Thank you - all of you - especially @sldrx I hope by now someone has done the research needed to publish a paper on this topic.

Last week, after years of being sadder than sad, I agreed to try an antidepressant. I tried one in 2015 but my G/I system couldn't handle it. My doc is aware that SSRIs have an impact on gut motility, so he prescribed a micro dose of Zoloft to start - only 12.5 mg once daily. I did my level best to tolerate the unrelenting diarrhea, the new stomach pain and nausea to the point of retching.  My mood did lift, but after 8 days and the loss of 5 pounds, I had to send up the white flag and call it quits. My doc agreed, Zoloft isn't gonna work for me.  After it clears out of my system, he wants me to try Lexapro, but at this point I think I might be better off staying away from SSRIs altogether. I need the jpouch to keep working - I don't want to put any stress on it. Thoughts?

I did fine on Wellbutrin (buproprion) — that drug affects different neurotransmitter pathways (dopamine and norepinephrine but not serotonin), and my K-pouch had no issues with it. I did not feel anxious or restless but I did lose weight on it so if you're already slim, prepare to increase your caloric uptake for the duration; the lost weight came back when I came off the drug.

Ketamine doesn't affect serotonin pathways either — see Shavon's post above — but its not covered by insurance and its pretty expensive. If cost is not an issue, you might look into it but if it were me, I'd make sure there was a trusted psychologist or psychiatrist involved because its a very powerful drug.

Most of the rest of the antidepressants on the market now are SNRIs — they affect serotonin in the same way as SSRIs but they also affect norepinephrine — and my best guess would be that we'd have the same issues. So my personal suggestion would be to consider Wellbutrin and see what your therapist thinks about giving it a try.

Thank you @sldrx, I very much appreciate your quick reply and most excellent suggestion. I did try Wellbutrin, twice, and you are right, both times it worked very well. For a few weeks. I had zero G/I issues, zero diarrhea and my mood lifted significantly. Unfortunately, no matter how much water I drank, for some odd reason buproprion dried me out so much that I had the opposite problem. Dry mouth and constipation. I developed blockages that required Miralax to move along, and some days not even Miralax worked. I ended up being x-rayed for an SBO both times, only for the x-ray to show that the blockage was not in what remains of my small bowel, it was in my pouch and no evidence of a stricture or adhesions causing the problem. The only change I had made was taking Wellbutrin, and the problem resolved when I stopped.

I really do appreciate your taking the time to reply. It's uplifting and comforting not to be alone with this stuff!

I’m so sorry that Wellbutrin didn’t work out for you. I love it because it works quickly and there are no side effects. However, I can’t take it because I’m already losing so much weight - it makes it even worse. Hopefully I can figure out this weight issue and get back on it. I tried Paxil but couldn’t even take it for 2 days - it messed my gut up so badly. Luckily, therapy has been enough for me so I no longer need ketamine. However, it worked wonders and was covered by my insurance through my pain specialist (instead of a psychiatrist). So maybe look into it.

Good luck 🍀

Hi @Shavon , thank you so much for taking the time to add your information and experience. Ketamine is new to me so I did a little research on the internet. It sounds promising, fingers crossed. I understand insurance might not cover it, and it's pricey so I will bring it up with my doc and take it step by step.

May I ask three questions about ketamine? No worries if you do not have time to respond, but if or when you have time - here they are:  1) did you have any G/I side effects? 2) did you add ketamine to the anti-depressant you were already taking or did you take it without being on an anti-depressant? 3)  did you go the route of IV infusions or the nasal spray or something else? I thank you kindly in advance for your help.

My doc said we will wait for the sertraline to clear out of my system (which won't take long) - and then try Lexapro. I admit to not feeling the least bit enthused about Lexapro since it is an SSRI and I'm afraid my G/I system will respond similarly to the SSRI sertraline.

And, in closing, I agree with you, Wellbutrin can be just the ticket and I am sorry it is causing you to lose weight you can't afford to lose. Have you tried consulting with a nutritionist? They might be able to help figure out a palatable way to add the calories needed to gain back and maintain weight. Mental health is so important, but being a healthy weight is too.

All the best to you!

I advise you to check with your doctor and maybe even a pain specialist about getting ketamine covered by your insurance. My doctor had to submit it in a specific way to get it covered - but it worked. He was only able to get the infusions covered because the nasal spray was still very new. I did not have any side effects at all. I was not on any other medication.
I may look into a nutritionist however I know what to eat. It’s just that I no longer have an appetite. My therapist thinks it might be a lingering after-effect of my depression - which is why we tried Paxil.

Hi @Shavon thanks for the advice. i will definitely talk with my doc, I have an appointment tomorrow. Now that I am 3 days past my short but disastrous 7 day trial with 12.5 mg of Zoloft, I no longer have the terrible stomach aches, and I am not in any pain anywhere else, so I can't justify a pain diagnosis as a reason for ketamine. Depression? Hell yes, but my insurance company may not agree. I will give it my best go. It will probably mean trying Lexapro first....time will tell.

I will you all the best with gaining some weight back. I understand having zero appetite, and wish I could help.