Three Years Out and Still Having "Accidents"

Chris Ptown
Chris Ptown Member Posts: 116

Hello Everyone!  I hope you all are doing great and at this point only a few of you might remember me.  I have been cancer free for over three years now but at least once a month or maybe once every two months I have an accident.  It usually happens when I am somewhere where I can't make it to the bathroom.  On Wednesday I was at the New England Patriots parade in Boston and it was freezing cold.  I stood outside in slush for almost four hours before the parade came by.  I didn't even realize I had an accident until I started to walk.  It was awful.  I had to get the train back home and was praying nobody was noticing.  Luckily I was wearing black Levi jeans.  Sorry for the gorey details.  I just wanted to know if any of you who have been a few years out still have accidents?  I have to tell you that radiation did a number on me.  I also don't want to get into anymore details than I have to because I know most of you are females but the radiation pretty much left me...lets say needing Cialis if you know what I mean.  But, it's better than the alternative right?  We are here and we are alive so we have to be thankful for that.  I just wish the accidents would stop happening but something tells me they always will.  Happy New Year to all of you and Happy Valentines Day too!  Cheers!

Comments

  • nicotianna
    nicotianna Member Posts: 209
    accidents

    Chris - I appreciate your candor!  I am 1.33 mos. out of XRT.  I do not go far from a bathroom so I have not had public accidents.  However, I often have 5 sec. warnings in which case I make a beeline to the BR.  For me it usually can be attributed to the vegetables I ate the day prior.  My suggestion is to make a diary & avoid the foods that cause you problems prior to going anywhere that is not easily accessible to a BR.  Best wishes!

    Nic

  • Ouch_Ouch_Ouch
    Ouch_Ouch_Ouch Member Posts: 508 Member
    Soory to hear you still have problems.

    I've only been 7 months out, but I have incontinences about 2 x week. It would probably be more often if I wasn't so good at sprinting to bathrooms .^_^.

    I wear women's heavy-duty menstrual pads or incontinance pads at all times in my under pants. I also carry extras, as well as clean undies, in my diaper bag...uh, pocketbook. I keep a supply of those Comfort Cream Cloths with me at all times, too, as I can't yet do without them due to anal pain. (I swear that I don't work for the company - they just work so darned well!) It must be more problematic for men to carry back-up supplies unless they are used to carrying briefcases or message bags.

    Maybe keeping a long-tailed shirt with you or a longer jacket will help in the event of a mishap? And a small bottle of room scent spray for a discreet spritz of orange or something nice?

    I've wondered about the treatment's effects on men, due to the anatomical differences. I'm sorry that you have problems, but I'm glad that there is a fall-back med available to you. I know how horribly I was burned by the radiation. I wonder about the delicate skin covering the testes - was that area shielded during zapping? My husband finds it horrifying to think of the boys being fried - that's his biggest concern about getting anal cancer. [ <--- EDIT: He doesn't have it; I meant to say his concern about him ever getting it. ]

    I hope your feet weren't frost-bitten, by the way! How's NYC/NJ tri-state-area life treating you? Me, I'd love to live above Zabar's in Manhattan, even if I never find a parking space again.

  • mp327
    mp327 Member Posts: 4,440 Member
    HI Chris

    Well, since I'm an "old-timer" here, you know I remember you!  I'm sorry you are dealing with incontinence issues.  I went through a bout of that a few months ago and never did figure out why it started happening all of a sudden.  I am almost 6 1/2 years out of treatment and had been getting along without that side effect until it hit me.  Strangely enough, it lasted only a couple of weeks and has now resolved on its own--why, I don't know.  My best guess is that it was food related.  I do know for a fact that I have problems digesting greasy/fried foods.  I suggest keeping a food journal for awhile to see if you can pinpoint problem foods.  Then you'll know what to avoid. 

    You might check out this website and see if this product would be worth trying.  Obviously, these pads are meant to protect against bowel "leakage" and not full blown bowel movements or diarrhea, but they might offer enough protection, at least until you can make it to the nearest men's room.  https://www.butterfly.com/butterfly-men/

    I do not want you to feel like the Lone Ranger here--I think many of us have had these incidents, including me, and male or female, it doesn't matter, they are embarrassing.  I hope you can tweek the diet enough to avoid them.  If not, try the Imodium on a routine basis, perhaps starting with 1/2 tablet per day to see if it helps, and increasing dosage if necessary.

    Good luck to you, my friend!

    Martha 

  • mxperry220
    mxperry220 Member Posts: 493 Member
    I Know What You Mean

    I finished treatments January 2009.  For the first 2-3 years I was not comfortabe getting too far from home for fear of an accident.  I had one accident right after treatments while out at the grocery store.  I do not have diarrhea but frequent bowel movements.  My normal bowel movements pre cancer were 1-2 times per day.  My norm today is 3-4 bowel movements daily.  I make no appointments before being up for at least two hours before going out.  The mornings are more of a challenge than other times during the day.  I still take 2 immodium per day.  The doctors said they could do no harm. Erectile dysfunction is common with anal cancer treatments as well as inability to produce semen.  The radiation can do a number on the male reproductive system.  Hope this helps.

    Mike

  • sephie
    sephie Member Posts: 650 Member
    yes still accidents

    i am 5.5 yrs after tx.... and still have accidents...some small,,some large... i can not always feel when i need to go.....the radiation does a horrible thing to our vagina and perianal area..... makes everything hurt so badly even with lubrication....have tried them all including coconut oil.... with this much pain it is hard to have intercourse and my hubby feels badly hurting me....so what  a mess..... others after tx seem to do just fine.....i have done the dilators and etc...but still painful.....just to let you know that you are not alone.......sephie

  • jbug2
    jbug2 Member Posts: 73
    to Chris

    Happy Valentine's Day, to you, Chris!  Congrats on 3 years cancer free!  Those darned after effects of the radiation ... I know them well!

  • Ouch_Ouch_Ouch
    Ouch_Ouch_Ouch Member Posts: 508 Member
    mp327 said:

    HI Chris

    Well, since I'm an "old-timer" here, you know I remember you!  I'm sorry you are dealing with incontinence issues.  I went through a bout of that a few months ago and never did figure out why it started happening all of a sudden.  I am almost 6 1/2 years out of treatment and had been getting along without that side effect until it hit me.  Strangely enough, it lasted only a couple of weeks and has now resolved on its own--why, I don't know.  My best guess is that it was food related.  I do know for a fact that I have problems digesting greasy/fried foods.  I suggest keeping a food journal for awhile to see if you can pinpoint problem foods.  Then you'll know what to avoid. 

    You might check out this website and see if this product would be worth trying.  Obviously, these pads are meant to protect against bowel "leakage" and not full blown bowel movements or diarrhea, but they might offer enough protection, at least until you can make it to the nearest men's room.  https://www.butterfly.com/butterfly-men/

    I do not want you to feel like the Lone Ranger here--I think many of us have had these incidents, including me, and male or female, it doesn't matter, they are embarrassing.  I hope you can tweek the diet enough to avoid them.  If not, try the Imodium on a routine basis, perhaps starting with 1/2 tablet per day to see if it helps, and increasing dosage if necessary.

    Good luck to you, my friend!

    Martha 

    Immodium liquid.

    "If not, try the Imodium on a routine basis, perhaps starting with 1/2 tablet per day to see if it helps, and increasing dosage if necessary."

    I use Immodium liquid as it's much easier to titrate fractional doses, like 1/3 of a dose or 1-1/3 of a dose. However, I find that it tastes icky - keep something handy, like a hard candy, to take away the taste!

  • cap630
    cap630 Member Posts: 151
    Accidents

    Yes, Chris I remember you. You're not alone. I am almost four years out from treatment and when I have to go I have to go!  I have a "poop" bag that I carry in the car.  The bag contains a plastic bag, baby wipes, underwear and a pair of sweatpant.  Just a little piece of mind.  

  • 0626june
    0626june Member Posts: 73
    Patriots

    they beat my beloved Seahawks! But anyway, people keep telling me that Depends are getting more advanced and look more like real underwear now. (none I ever wore)  My plan is to use them when I know I'm going to be away from a bathroom for a long time and panty liners the rest of the time. I've had a few accidents and fortunately, I was with kind and  understanding people when they occured. 

  • Terri Sue
    Terri Sue Member Posts: 22
    Chris, you're definately not

    Chris, you're definately not alone bud! The Dollar General Store carries "pull ups".  They are gray and would resemble gray tighties if you are like my husband and often desplays a plumber's crack since he has worked his butt off over the years.  He also has your issue, especially at night.  When it comes to intimacy, take it from me as a female:  I just want to be held and cuddled.  I'm scared too and sex isn't even on my mind most of the time.  Chin up!

     

  • RaleighMusicGuy
    RaleighMusicGuy Member Posts: 27
    Wow! This is disconcerting

    Hello everyone,

    It has been 3 weeks since chemo and radiation therapies ended.  Reading your posts are disturbing.

    I am wondering if doing kegel excercises will help.  Just a thought.

     

    I appreciate the many topics and posts on the CSN.

     

    Blessings to everyone

  • mp327
    mp327 Member Posts: 4,440 Member

    Wow! This is disconcerting

    Hello everyone,

    It has been 3 weeks since chemo and radiation therapies ended.  Reading your posts are disturbing.

    I am wondering if doing kegel excercises will help.  Just a thought.

     

    I appreciate the many topics and posts on the CSN.

     

    Blessings to everyone

    RaleighMusicGuy

    I know it can be discouraging, but I truly believe things will get better for you as time goes on.  Watch your diet closely, as too much fiber, fresh fruit and veggies can all cause issues for some people.  Your intestinal tract has been damaged by the radiation, but in time, it will repair itself.  You may have lingering side effects that will remain, but I think things will improve greatly for you if you are patient, eat the right kind of diet, and perhaps take Imodium routinely, which my rad onc said was perfectly safe to do.Trying to get all of these things in sync takes some trial and error.  I think most of us have been there, at least to a degree.  I wish you all the very best in your recovery.

    Martha

  • jbug2
    jbug2 Member Posts: 73
    mp327 said:

    RaleighMusicGuy

    I know it can be discouraging, but I truly believe things will get better for you as time goes on.  Watch your diet closely, as too much fiber, fresh fruit and veggies can all cause issues for some people.  Your intestinal tract has been damaged by the radiation, but in time, it will repair itself.  You may have lingering side effects that will remain, but I think things will improve greatly for you if you are patient, eat the right kind of diet, and perhaps take Imodium routinely, which my rad onc said was perfectly safe to do.Trying to get all of these things in sync takes some trial and error.  I think most of us have been there, at least to a degree.  I wish you all the very best in your recovery.

    Martha

    My morning cup of coffee

    My morning cup of coffee sends me running to the nearest restroom, no ifs ands or buts, gotta go!  I'm only 2 years out and sure do hope this changes.  I get the occassional light spot or near accident when I'm out shopping, too.

  • RaleighMusicGuy
    RaleighMusicGuy Member Posts: 27
    mp327 said:

    RaleighMusicGuy

    I know it can be discouraging, but I truly believe things will get better for you as time goes on.  Watch your diet closely, as too much fiber, fresh fruit and veggies can all cause issues for some people.  Your intestinal tract has been damaged by the radiation, but in time, it will repair itself.  You may have lingering side effects that will remain, but I think things will improve greatly for you if you are patient, eat the right kind of diet, and perhaps take Imodium routinely, which my rad onc said was perfectly safe to do.Trying to get all of these things in sync takes some trial and error.  I think most of us have been there, at least to a degree.  I wish you all the very best in your recovery.

    Martha

    Thanks

    Martha, Thank you for your insightful and encouraging words.  I will press on, because I am a man not without hope.  Thanks for the diet information.  I will contact our dietician at the cancer center and get some advice.

     

    Blessings,

    Michael

  • TraceyUSA
    TraceyUSA Member Posts: 316

    Wow! This is disconcerting

    Hello everyone,

    It has been 3 weeks since chemo and radiation therapies ended.  Reading your posts are disturbing.

    I am wondering if doing kegel excercises will help.  Just a thought.

     

    I appreciate the many topics and posts on the CSN.

     

    Blessings to everyone

    I remember reading these posts and finding them disturbing too.

    But for the most part it sounds worse than it really is, at least in my case.  Yes, there are side effects of treatment but they are managable.  It is scary & frustrating at times but this board is very helpful.  Being able to compare notes and offer each other suggestions & support makes it much easier.

    Hope you're feeling better soon!

    P.S.  There is pelvic floor therapy available.  I have not tried it but I believe there are others on this board who have and had success with it.

  • qv62
    qv62 Member Posts: 434

    Wow! This is disconcerting

    Hello everyone,

    It has been 3 weeks since chemo and radiation therapies ended.  Reading your posts are disturbing.

    I am wondering if doing kegel excercises will help.  Just a thought.

     

    I appreciate the many topics and posts on the CSN.

     

    Blessings to everyone

    Raleigh

    Prior to treatment  and as a result of many surgeries to remove tumors off the sphinchter as well as some skin graphing and reconstruction I did go to PT for pelvic floor strengtheing, it was very helpful.  As much as I could use to go back now post treatment  I haven't due to both time and money but I would highly reccomend it.