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incontinence

suzynanny
Posts: 36
Joined: Jun 2011

I finished treatments in August last year so I am over a year out. But I cannot control my bowels. I have tried dietary changes immodium everything under the sun. Just wondering am I the only one. I am at my whits end. I tell the doctor and he just says this is your new normal. Thanks in advance for any info.

mp327's picture
mp327
Posts: 3112
Joined: Jan 2010

My bowels are still quite sensitive to too much fiber and I'm over 4 years out of treatment. I have changed things up some with my diet and seem to be doing better. Have you tried something such as Metamucil, which is supposed to bulk up the stool and hopefully avoid accidents? Kegal exercises are primarily used to help strengthen the bladder muscles. However, I think the same exercises can be helpful with the muscles that control bowel function as well, so you might try those. Diet may have more to do with this than anything else. Have you tried keeping a food journal to track what you eat and how your bowels react? Sometimes doing this can help identify trigger foods to avoid. Have you ever been put on Lomotil, which some people find much more effective than Imodium.

Unfortunately, I think for some people, your doctor may be right. Radiation does such a number on the bowels. I understand your frustrations and am sorry you are experiencing these life altering side effects. Perhaps someone else will have some better suggestions.

mxperry220
Posts: 369
Joined: Mar 2011

I am 3 years 11 months post treatment and take 3 immodium daily. The radiation oncologist said taking 3 immodium daily would have no adverse effect on me. I have not been constipated as a result of taking them. I get the generic equivalent at Sams' which is much cheaper than Immodium brand. I do not have diarrhea but my new BM norm is 3-4 times per day rather than 1-2 daily BMs before treatment. For the first two years I was feaful of venturing too far from home without knowing where a bathroom was. Iam better now even though I make certain I know where a restroom is in case I need one.
Mike

Marynb
Posts: 1134
Joined: Aug 2012

I had trouble for about a year. In some cases, time improves things. I changed my diet to include fiber to bulk things up and it has helped a great deal. Add 1/4 to 1/2 cup of hummus daily to your diet. Also, either take a probiotic and/ or one 8 oz. serving of plain yogurt. Eliminate sugars, junk food, processed food. Give those changes about 2 weeks to see if that helps. Also, all vegetables should be cooked for ease of digestion.

sandysp's picture
sandysp
Posts: 852
Joined: May 2011

I had all kinds of problems, the worst being diarreah. I would go up to twelve times a day.
The Surgeon recommended Psyllium Husks which are in Metamucil or you can order them other ways too. I buy mine at Costco. I try to remember to take everyday because it really helps.

All the best,
Sandy

suzynanny
Posts: 36
Joined: Jun 2011

Thanks everyone

RoseC's picture
RoseC
Posts: 513
Joined: Jun 2011

I'm a little over 4 years out. For the first 8 or so months after treatment I dealt with incontinence. It gradually got better. I did the kegel exercises and I think they helped a LOT. Really scrunch up that butt and hold for 20-30 seconds. Repeat as often as you are comfortable with.

Best wishes! I hope things get better - it's an awful thing to have to experience.

MorganK
Posts: 1
Joined: Jun 2011

Hello everyone, this is my first time on this site. I am a 1 year and 4 month survivor. In the beginning the diarrhea was bad but things have gotten progressively worst. I now can not control my bowel movements and have accidents often. Tomorrow is my last day at work. I am a community health educator and my job is going out into the community to do presentations. My bathroom runs interfere with my presentations. My supervisor has been very understanding but I have missed so many days of work that she suggested that I take a medical leave of absence to 'rest'. I am taking a 30 day leave but I don't think that they will take me back. I live alone and this is my only means of support. My doctors all say the same thing, more fiber, diet, etc. but nothing seems to help me. I am totally stressed and depressed. My car broke down and I am afraid to use public transportation for fear that I will have an accident on the bus. Sorry, just needed to vent.

mp327's picture
mp327
Posts: 3112
Joined: Jan 2010

I am so sorry you are having such terrible incontinency issues. I have had accidents in the past and know the humiliating feeling. You said your doctors suggested more fiber. I strongly disagree with that advice. Perhaps cutting back on fiber would help. I can always tell when I've eaten too much roughage, as I make many more trips to the bathroom. I'm sure you have tried medications but if you could expand on that and tell us what you've tried, perhaps someone will have a new idea that you could try. My rad onc told me that taking Imodium on a routine basis was fine, so that's what I did right after treatment to help slow things down--1 Imodium daily. I also would eat a banana daily. Have you tried keeping a food journal to see if you can identify any foods that trigger this? Perhaps a low-residue diet would help. Check out this website for more information on that type of diet: http://www.webmd.com/ibd-crohns-disease/low-residue-diet-foods

I can certainly understand your frustration and I'm sorry that this has impacted your life to such a degree that you must leave your job. Please don't give up--there must be an answer. I wish you all the best.

LaCh
Posts: 532
Joined: Dec 2012

Apply for Social Security Disability. The process is long and slow, so the sooner you apply, the better. Keep in mind that they usually deny a first application and usually approve it on appeal.

Marynb
Posts: 1134
Joined: Aug 2012

Sorry to hear about your issues. I am wondering whether you have seen a gastroenterologist? It is hard to know what you have tried so far, so I will throw out some ideas to get you back to work. Have you tried probioltics? My Gastro recommended Align. I no longer need it. I now eat 1/2 cup of hummus a day to give bulk. It should help you within a week or two. Also, I eat 8 oz. of organic plain yogurt a day. All vegetables are cooked and fruit is limited. No sugars, alcohol. Eliminate junk food and processed food. No artificial sweeteners at all.

If you work with a gastro, they can get you to a good dietician. Most insurance cover this. Surely, there is a diet that will make your problems manageable.

Someone mentioned trying to get declared disabled. That would be pretty extreme and very premature! Nobody wants to be on disability when they could be a contributing member of society, which you are.

30 days may give you the time to figure this out. I am at about the same time post treatment. I think I have it figured out, but if I stray from the eating plan, I pay! I still cannot eat spinach, kale, broccoli......goes right through me.

Hang in there. You can figure this one out!

RoseC's picture
RoseC
Posts: 513
Joined: Jun 2011

Hi Mary - Sorry but I have to take issue with your comment about being not being a contributing member of society because one is unable at the current time to work. Incontinence is a very powerful rock to have to deal with and working while having it is not something everyone can do. Not many people at all could work while experiencing incontinence. But the fact that one is ailing in such a way does not make them a non-contributor to society. Hopefully this is a temporary thing for Morgan. I think this is the kind of thing that disability was meant for - to help out when there's something wrong that's beyond one's control.

Morgan, Hi. I've dealt with incontinence too, and it's an awful thing. I second Martha's idea about the food journal. I started keeping one and found that it helped a lot. I was able to track where and when I had problems and by doing so have been able to get things under control. For me it was the addition of Metamucil and bananas, and an occasional Immodium. We're all different - but the food journal led me in the correct direction and I hope it will for you too.

Marynb
Posts: 1134
Joined: Aug 2012

Sorry, I did not mean to imply that someone who was truly disabled could not be a contributing member of society in other ways. I was trying to say that she may be able to recover so she could continue to contribute to society in the way she had been prior to treatment. I think that
SSI was intended for those who are permanently disabled. I really think that declaring oneself permanently disabled so soon would be premature and unneccesary, hopefully. There may be a temporary disability program. I certainly suffered from severe diarreah for many months. We probably all did to some extent. It takes time and much work to find a healthy diet that works.

Angela_K
Posts: 374
Joined: Jan 2011

I am so sorry that you're going through so much. I so agree with Mary in that filing for disability would be a last resort for most of us. It's good to know it's available, though. I don't think Mary meant to offend anyone. She just doesn't want you to be so discouraged that you just give up and I feel the same way.

Bowel control was an issue at first for me coming out of treatment, but I kept on keeping on and eventually it all evened out and I have been able to tolerate all foods. (And like Mary, I choose to eat sugar free, clean organic food.) Keeping a food journal was helpful.

And then, out of nowhere, I pooped all over myself at a dinner party last week! :) (I can smile now . . .) Thank goodness I had my coat on and was on my way out the door.

I think you can figure it out with your doctor or RD. Is there a social worker the hospital where you received treatment that could help you explore social services including temporary disability? Please keep us posted on how you are doing and know that we will be cheering you on. And even if this is something that continues to be a major problem, we'll help see you through it, too.

Blessings,
Angela

RoseC's picture
RoseC
Posts: 513
Joined: Jun 2011

Same thing happened to me (but luckily not at a dinner party - eeks!). Over four years out and a couple of months ago, the bowels just let go. It was horrible. Metamucil and bananas seem to have helped a lot (and Mary, I added the hummus - which I love anyway - it's helped, thanks!).

Yeeks, we all go through so many changes. But we're here and will continue to be here. Suzynanny and Morgan, we hope you find your answers to this awful condition, and whether or not you do, we're here for you. We understand and hope you find the solution.

LaCh
Posts: 532
Joined: Dec 2012

Social Security Disability isn't necessarily permanent, life-long and doesn't preclude a return to the workforce is one's condition improves. It's intended to give an income to people unable to work for extended periods of time. FICA isn't withheld only for retirmente benefits. FICA is also withheld for either long-term or permanent disability. Why go without an income because of an inability to work when the funds that have been withheld from a paycheck since the beginning are set aside for just such a situation? It isn't a question of contributing or not contributing to society (I won't comment on that) but the fact that every employed person contributes to the funds set aside for a time when work may not be an option. It's a question of no income or some income. That's all. And nothing is etched in stone.

suzynanny
Posts: 36
Joined: Jun 2011

I know exactly how you feel. I can't go anywhere it is terrible. So sorry you are enduring the same thing. My heart goes out to you. I have tried everything under the sun.

 

sandysp's picture
sandysp
Posts: 852
Joined: May 2011

l have to take Metamucil for my fiber and watch carefully foods from the broccoli cabbage family, and be careful around high fiber cereals since many of them are just too rough. The nurse at my Colo-rectal surgeon's office said Metamucil is better anyway, at least fiber wise.

Good luck,

Sandy

suzynanny
Posts: 36
Joined: Jun 2011

How many do you take per day? I bought some and just do not know how many I need to take. Thanks.

cap630
Posts: 150
Joined: Jul 2011

I understand and keeping a food journal has helped.  I also keep a "Poop Bag" in my car. I have a black and white polka dotted bag with a hot pink bow/poop bag and in it is a plastic bag, wipes, toilet paper, underwear and a change of pants.  I have had to pull over jump in the back seat to poop.  Hey - poop happens!

 

 

BeaRose's picture
BeaRose
Posts: 45
Joined: Jul 2011

I am 2 1/4 years out of tx and have been on a prescription med Lomotil for incontinance. My Dr says it is equal to taking 5 imodium at a time. I take them 3x daily. I have pretty good control most of the time except when I have very watery diahrea. I ended up with a fistula in the perineal area so spincter control can not always control stuff. Needless to say accidents are still an unavoidable occurance. I always just tell myself sh*t happens and at least I am alive. My employer Is understanding and allows me to run home to clean up if I need to. Over time it has gotten better so hang in there.  

sandysp's picture
sandysp
Posts: 852
Joined: May 2011

I like to mix mine as directed. The tablets, I am afraid I may not drink enough water to be absorbed properly. If I mix the powder with water, then I know I have enough water. It tastes fine.

Good luck,

Sandy

eihtak
Posts: 887
Joined: Oct 2011

Lots of good advice here. I have a colostomy, so although problems with bowel movements could/do arise, I'm kind of lucky to have the bag!! I can still have leaks though, but thats rare now. That being said, I still need to watch what and when I eat. The comment about artificial sweetners is so true....almost runs straight through. Too much fiber....blockage! The food journal is a great idea since we all react differently. I do include yogurt in my diet daily and eat more often but small amounts at a time. I am not quite 2yrs post treatment and still learning.

As far as disability goes....it is definately an option. There are a lot of programs out there just for this purpose. I had been on a temporary, partial disability program and would have had to rely soley on help from my kids without it. I got help applying from our local aging and disability resorce center in my area. I was originally denied, but they were able to help with the approval. We have $ taken from us every paycheck for years and is there to help when needed, it definately does not have to be a permanent thing.

Wishing you luck on all...will keep you in my thoughts and prayers.

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