incontinence

RoseC said:

I'm a little over 4 years
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.

mp327 said:

Hi MorganK--
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.

Marynb said:

MorganK

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!

Angela_K said:

Agree with Marynb
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 said:

Hi Angela
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.

cap630 said:

Bowels

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!

 

 

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.