anyone have problems with fecal incontinence?

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Allyme
Allyme Member Posts: 319
edited May 2019 in Stage IV/Metastatic Breast Cancer ONLY

This is an embarrassing problem I have been having for about a week now. I am no longer on taxol. The last taxol was 18 March. I am just on Herceptin for now, the Perjeta was put "on hold" after my allergic reaction that I had after 6 months of use. Anyway, I'm only 37 and have never had fecal leakage before. It's embarrassing and scary to me. It didn't start until I had started taking Metamucil, as a preventive measure from all the painkillers I'm prescribed. I wasn't having any constipation problems, but was just trying to prevent any. I don't know if this is what caused the new problem or not. Any ideas would be greatly appreciated. I haven't been on here lately, because I have just been so depressed. :( Thanks for any responses.

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  • WinningSoFar
    WinningSoFar Member Posts: 951
    edited May 2015

    I'm so sorry, dear. I certainly don't know what's causing the leakage, but I'll agree that the metamucil is a likely suspect. Maybe you should stop it for a while and see what happens? Let us know.

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  • Allyme
    Allyme Member Posts: 319
    edited May 2015

    Thanks for responding, Winning. I stopped taking the Metamucil about 4 or 5 days ago. That's why I don't know why I'm having leakage. I'm trying to give it some time to see if it'll stop on it's own. I'm so nervous and depressed, thinking it's another Met. I do appreciate your response very much though. :)

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  • blainejennifer
    blainejennifer Member Posts: 1,848
    edited May 2015

    Sometimes you can get a compacted bit of stool in the rectum/sigmoid area, and the body will respond by sending liquid poo around the blockage (encopresis). Could that be happening here? Have you been producing any firm stools?

    Take care!

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  • DivineMrsM
    DivineMrsM Member Posts: 9,620
    edited May 2015

    Are you taking an OTC medicine like Imodium? That would be the first thing on my list to try

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  • WinningSoFar
    WinningSoFar Member Posts: 951
    edited May 2015

    Dear Allyme--don't go there with the cancer fears. I have had constipation and diarrhea and explosive diarrhea and fecal leaking, at different times. All of it was connected to chemo and/or the drugs with it. It all cured itself. I did use Imodium at times and that's something to try to stop the leaking. Please try to assume that it is your body still reacting to chemo drugs.

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  • 208sandy
    208sandy Member Posts: 2,610
    edited May 2015

    By any chance - are you taking magnesium? My PCP has seen quite a few patients lately that have been taking way too much of it and it can cause diarrhea - trouble is most people don't bother to mention it because they think it is just a harmless supplement. Hope you feel better soon.

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  • Allyme
    Allyme Member Posts: 319
    edited May 2015

    Thank you all for responding. I feel so much better. I have been trying the Imodium and it seems to be working some. I had been eating mostly cream of wheat before all this happened because I was trying to avoid constipation. Then I got the Metamucil too. I was so stupid to mess with something that wasn't broken in the first place. I was having regular bowel movements, I was just scared of constipation. It's not liquid leakage, it's just soft and unformed leakage. I was just so upset, crying, and depressed thinking my life was just over. Thanks for responding and giving other possibilities. I appreciate you all so much. :)

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  • sueopp
    sueopp Member Posts: 1,541
    edited May 2015

    Don't beat yourself up for trying to stay on top of things. I have been guilty of the same kind of thing (keeping my port covered daily with a gauze pad to head off possible infection, then getting a brush burn in the area from the pad). Part of this game is to stay alert and beat the bugger (and side effects) back with a vengeance. Hang tough honey and take a breath - you can do this. SUE

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  • Zillsnot4me
    Zillsnot4me Member Posts: 2,687
    edited May 2015

    Thank you for sharing. Don't be ashamed or afraid of your body's responses. Easier said than done but we all learn from each other. These drugs and their SEs are buggers.

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  • car2tenn
    car2tenn Member Posts: 515
    edited May 2015

    All, that is what we are here for on Stage 4 site. You can ask anything and Usually get the best advice there is ...certainly better than calling your doctor's nurse . Allyme, do not ever be embarrassed to ask anything that is related to this beast known as Breast cancer, stage four and its treatments. Most of us have issues that do not always make it onto the screen...good luck Carolyn from Music City

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  • debiann
    debiann Member Posts: 1,200
    edited May 2015

    When I was having chemo I remember a few women reporting the same problem. Chemo is harsh on your digestive track. I hope your problem resolves on its own soon, but don't be embarrassed about talking to your MO or NP about this problem. They've heard it all. 

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  • Beatmon
    Beatmon Member Posts: 1,562
    edited May 2015

    have you tried probiotics? Helped me a lot. Good luck.....know just how you feel

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  • Allyme
    Allyme Member Posts: 319
    edited May 2015

    Thanks for everyone who responded. It's been so embarrassing to ask anyone about this problem. I feel like I'm falling apart. I get so sad and depressed when a new problem comes along. I've only been diagnosed for 7 months. I really get sad, because I have no idea how I can survive like this for years. I just don't know how people do it. I also still need to find an MO who I can even feel comfortable with asking questions like this. I wish my first one didn't move to another state, I actually felt comfortable with him. I plan on calling a female MO, who was recommended to me on this site tomorrow. I appreciate you all, because right now I feel so lost and alone.

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  • debiann
    debiann Member Posts: 1,200
    edited May 2015

    I'm sorry this has been so difficult for you Allyme. My husband had this problem for 3 months following a surgery and it was very upsetting to him. I hope you find a MO you like and trust. Sending hugs and prayers your way.

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  • WinningSoFar
    WinningSoFar Member Posts: 951
    edited May 2015

    Dear Allyme,

    I think chemo does a mean number on all linings, like the lining of your mouth and inside your digestive tract. That's why we get these problems. I'll bet this is more commonplace than not. How about your oncology nurse? They have seen it all and can tell you that it's nothing to worry about and what to do about it. That way you have more than one person at your onc's office to ask. I had a really embarrassing problem that I had to ask the onc's pharmaceutical nurse--really embarrassing because sing I had to admit I had gotten a script from my cousin for an antidepressant which was the wrong drug because I was too loopy to remember the right name. And the drug was causing all sorts of suicidal ideation which then caused the whole medical establishment to rush to my side in case I did myself in. How embarrassing was that? Very.

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  • amontro
    amontro Member Posts: 504
    edited May 2015


    Ever since my diagnosis and treatments (being on and off of drugs that cause diarrhea and/or constipation), I started using extra long panty liners, the ones with wings. Since they extend to the rear of the panties, there is coverage for some leakage. They've been a blessing while I'm at work and they have caught small accidents.

    I particularly use Always Infinity Overnight Longs with wings. They are extra long so don't place them too far in front, they'll extend to the back, and the wings keep them in place.  Also, the back of the liner is wider.

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  • Allyme
    Allyme Member Posts: 319
    edited May 2015

    Thanks bunches for responding, everybody. I really appreciate the info and advice. The MO ' S nurse is rude and acts like everything she has to do is bothersome to her. I actually had to go in person on Monday to ask about my labs, since the MO or his nurse wouldn't call us back after at least 4 messages my DH AND I Left for them. The results are available online, so we knew they were back. We only wanted someone to go over them with us. I had my appointment with the MO on Wednesday, Who Said he'd call on Friday to go over the results. He never did. So Monday, his nurse said he'd call us in 20 minutes to go over them. After 2 hours, that's when we finally went in person to ask. Anyway, I have an appointment with a new MO in 2 weeks. I plan on asking about all of my options, even stopping all treatment. I love my DH and daughter very much, but it's so hard to find help. Thanks for responding. :)

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  • stagefree
    stagefree Member Posts: 2,780
    edited May 2015

    I ditto Mrs M. Helped me before..

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  • Iamstronger
    Iamstronger Member Posts: 378
    edited May 2015

    I had this when I was having Rads on my spine. Since I had pads still, I just used those in my underwear. I think it depends on how much you have.

    On another note, I have found that Smooth Move tea is amazing for constipation. I would drink one cup before I went to bed and would have a bm the next morning. It wasn't explosive or painful. Works like a charm for me.

    GL, yes, I have had to have some very uncomfortable conversations with my 68 yr old onc. I am convinced that he isn't hearing anything new and just blurt it out

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  • Allyme
    Allyme Member Posts: 319
    edited May 2015

    Thanks for responding, Iamstronger. I don't have big leakage, and it only usually happens when I am up moving around. It Only started when I tried Metamucil, even though I was having perfectly fine bowel movements. I was afraid with the pain meds, I would have those problems. Instead, I created a different problem. Anyway, thanks bunches for your response! :)

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  • tinyturtle
    tinyturtle Member Posts: 34
    edited May 2019

    Heads up - this post is going to be pretty frank! I've had fecal incontinence 3x since starting treatment. I've only been on the pills -no IV chemo yet. It happened today while I was in the kitchen fixing lunch. I was in a great mood (so it wasn't triggered by stress) - a little tired but not too bad - and I hadn't had any coffee or greasy foods.

    There's never any warning. And all you can do is panic and cry and hope you dont go through all your clothes while you rush toward the shower. This time was worse than the others. After showerimg I returned to the kitchen to find a tiny puddle and a trail of drips. Thank god no one was home!

    Perhaps there was some warning though because I had frustrating leakage thay last 2 days.. Like I forgot to wipe..I blamed it on my treatment-created hemorrhoid!

    At least after you're done crying you can search the internet and end up on this thread ..finding some comfort that you aren't the only one. :)

    Anyway Im super mad.. I was in a great mood and was excited to go do stuff. Im going to invest in some pee proof undies (I have no problem with urine incontinence but it has to better than nothing!)

    The worst part is locking yourself inside all day after an incident.. And running to the toilet frightened over any twitch or feeling of pressure. After the 2nd time this happened a year ago - out of fear I bought a waterproof mattress cover. I was afraid to sleep!!

    For today though, Im going to be my bravest and IDGAF-est and double up on underwear and throw on a panty liner. (Triple protection!!) I'll also have a squeeze bidet and spare undies in my bag as well. With this arsenal (lol at 'arse') I'm going to wait a couple hours and then try to go out into the world anyway -- because the last 2 times it happened, it only happened once in a day.

    #fingerscrossed !!

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