House Arrest...

lizzydavis

I feel like I am under House Arrest.
I had to respond to a dinner invitation...
"Thanks for your invitation to dinner. I am so sorry but I cannot go
out yet. It is hard to describe what is going on with me but I will
try. I am irregular and suffer from urgency issues. For instance,
after I returned from the hospital today, I had my first meal of the
day. For the next two hours, I was running back and forth to the
bathroom. Not fun. I have left the house to run an errand and found
that I have to come back in 5 to 10 minutes or sometimes before I get
out of the driveway. Therefore, I have been missing daily walks."
--- My surgeon said I could take Imodium - BUT VERY LITTLE. So I am afraid to take it. How will I be able to even go out for the Chemo treatments? Can anyone offer some much needed advice? THANKS!

dorookie

I hate to admit this
But when I was in your shoes, I had to wear depends, its embarrassing but at least It gave me some security just in case I were to have an accident while I was out. Also carry extra ones too. May I ask when you have these urgencies are you actually producing anything or is it just the urgency to go? I ask because sometimes I would just take a Xanax to calm me down, most times when you are stressing it tends to make you have to go to the bathroom even if you dont produce anything, ya know what I mean. JUst my opinion...

Good Luck and believe me you are not alone in this...

Take care
Beth

KathiM

Banannas...and cheese....and water....
It WILL get better!!! The WORST place in your entire body to have a surgical procedure is in your lower digestive system. A dear surgeon friend of mine, many years ago, said "anytime we even look crosseyed at the small or large intestine, the patient struggles with bathroom issues for awhile!"

I declined invitations to people other than those I knew I could trust to not get upset when I ran to the toilet. As time went on, I held things a bit longer each time, just to retrain my bowel...I had lost my entire rectum (storage facility), and had a new one made out of descending colon...an organ whose job for 49 years had been to process and push all the stuff...NOT hold it!!!

I tried to keep a laugh inside. BUT I was not afraid to pull into ANYwhere (Dennys, hotel lobbies, etc) and say "I am a colorectal cancer survivor, and when I need a bathroom I REALLY need it...could I use yours?" I never got a 'no'...and I got much sympathy...also inspired 3 people to get colonoscopies...lol!

I still, almost 5 years later, have an occasional 'everyone into the pool' session in the bathroom...usually after eating something I know causes trouble (we all need to 'sin' every once in a while, don't we?????). I usually know when it's going to happen, so I 'sin' at home...and bear the consequences...

It may be 'house arrest', but before you know it, you will be back where you were before...

Hugs, Kathi

lizzydavis

Beth & KathiM - Thanks so much for your responses!
Beth & KathiM --- Thanks so much for your responses!
Yes, when I have the urgency, I do produce. It is so comforting to know this will get better. I was thinking that I could not live like this for the rest of my life. I have scoped out every bathroom. I have made emergency stops at large executive office buildings and the local hospital. I am trying different things. I believe the Edy's popsicles which contain sorbitol might have been an added culprit. Also, I have started taking Ginger capsules. Things are better this afternoon. I even went out for 2 hours with no stops. Life is good again. Thanks for being there for me. It means so much!!

dorookie

lizzydavis said:

Beth & KathiM - Thanks so much for your responses!
Beth & KathiM --- Thanks so much for your responses!
Yes, when I have the urgency, I do produce. It is so comforting to know this will get better. I was thinking that I could not live like this for the rest of my life. I have scoped out every bathroom. I have made emergency stops at large executive office buildings and the local hospital. I am trying different things. I believe the Edy's popsicles which contain sorbitol might have been an added culprit. Also, I have started taking Ginger capsules. Things are better this afternoon. I even went out for 2 hours with no stops. Life is good again. Thanks for being there for me. It means so much!!

Your welcome
Your very welcome sweetie, hope you have many more better days ahead...Good Luck

Beth

grandma2selena

Irregular and urgency issues
I understand all to well with what you are saying. The damage to my anal muscles from the cancer and radiation doesn't allow me much ability to try to stop it when it starts coming, I also have chronic diahrea from the secondary infection I got from the Chemo. I refused to let it control my life or stop me from living.

My family has been very supportive here at home and understand that I might pop in the bathroom at anytime if they are in the shower or tub, no matter how shocking it might be. In fact I keep the little key to unlock the bathroom door very near by.

I have began to learn what foods, and stresses make it worse, so when I do go out, I avoid these foods, believe me I have had my share of accidents, but I gracefully go in and take care of the situation. I guess too my having a 2 year old, I just look at it as if I am dealing with her. I have stopped at resturants, and given no explanation, just asked to use the restroom and have yet been turned down. I don't give my friends a second thought, as if they are going to get offended because I jump and run to the bathroom, then they are not very carring friends, they all know I went through the cancer, and though I have never openly explained the after affects, there just seems to be an accepting understanding.

Mine has gotten better as time has gone by and I am learning to tell the differences between the false urgencies and the true urgencies. I would wear the depends to get to my treatments, no one will know but you, carry an extra pair or two, also at most dollar stores you can buy scented bags used to dispose baby diapers in, keep these in your bag as well, it makes the disposal so much more discrete.

Debbie

daydreamer110761

lizzydavis said:

Beth & KathiM - Thanks so much for your responses!
Beth & KathiM --- Thanks so much for your responses!
Yes, when I have the urgency, I do produce. It is so comforting to know this will get better. I was thinking that I could not live like this for the rest of my life. I have scoped out every bathroom. I have made emergency stops at large executive office buildings and the local hospital. I am trying different things. I believe the Edy's popsicles which contain sorbitol might have been an added culprit. Also, I have started taking Ginger capsules. Things are better this afternoon. I even went out for 2 hours with no stops. Life is good again. Thanks for being there for me. It means so much!!

2 things...
First - long before I was diagnosed, I had bathroom problems. One day my friend (a pharmacist) saw me eating sugar free life savers - I was trying to quit smoking - one after the other. She looked at me and told me a long story about sorbital, and the problems it produces, and reiterated that since I already had problems - that was not helping.

Second - Immodium - I lived off of it all through chemo, in the beginning would only take one, which didn't work - my Onc told me I wasn't taking enough - the package says you can take so many a day, and he recommended I take up to that amount until it works. If that didn't work he would have prescribed Lomotil (I had been on that for years as a teenager). I take two at the first rumble and give it time to work. (although I did search out the restrooms at movies and stores that i go to just in case....)

kimby

Potty Issues
The first two months after takedown were the worst for me and it has since gotten better, partly because I eat differently and partly due to medication regimen. Here's what I do:

Eating: I limit
*chocolate
*alcohol
*raw veggies (instant salad shooter!)cooked are ok
*fresh fruit (canned is ok)
*fried foods
*Oreos are the worst for me

Add:
Bananas, Rice, Applesauce, Toast (brat diet)

Meds:
First sign of ANY diarrhea for the day: one dose Pepto Bismal, 2 Lomotil pills (prescription), 2 Immodium pills

Each loose stool after: one dose Pepto Bismal (2 TBSP), 1 Lomotil, 1 Immodium (up to 8 per day)

The medication regimen I'm on now is different but the above was recommended by my doctor after my takedown last year and has served me well. You need to check with your doctor before you start it, but you'll need a prescription for Lomotil anyway if you decide to try it. I found that dietary changes alone just didn't work for me.

I hope this helps,

Kimby

lizzydavis

kimby said:

Potty Issues
The first two months after takedown were the worst for me and it has since gotten better, partly because I eat differently and partly due to medication regimen. Here's what I do:

Eating: I limit
*chocolate
*alcohol
*raw veggies (instant salad shooter!)cooked are ok
*fresh fruit (canned is ok)
*fried foods
*Oreos are the worst for me

Add:
Bananas, Rice, Applesauce, Toast (brat diet)

Meds:
First sign of ANY diarrhea for the day: one dose Pepto Bismal, 2 Lomotil pills (prescription), 2 Immodium pills

Each loose stool after: one dose Pepto Bismal (2 TBSP), 1 Lomotil, 1 Immodium (up to 8 per day)

The medication regimen I'm on now is different but the above was recommended by my doctor after my takedown last year and has served me well. You need to check with your doctor before you start it, but you'll need a prescription for Lomotil anyway if you decide to try it. I found that dietary changes alone just didn't work for me.

I hope this helps,

Kimby

Debbie, Kimby & Daydreamer....
Debbie, Kimby & Daydreamer,

Thanks for sharing this much needed advice. Your input helps me so much. Many, many thanks!

Liz