Some things that have worked for me

Please feel free to read, share your thoughts, your stories and connect with others!
lcasadonte
Posts: 3
Joined: Fri Mar 03, 2017 6:26 pm

Some things that have worked for me

Postby lcasadonte » Tue Nov 14, 2017 2:02 pm

I write this as I hope it will help someone. I used this forum to do much research. I was diagnosed and had my surgery in 2012. While I have a tendency to continue to grow things I am happy to say it was a surgical cure and I won the lottery of life. What drove me to this forum was the aftermath to such successful surgery. The body just won't work the same anymore. Most of the time it just feels like a free for all (constipation/diarrhea). Like so many stories, 5 years later I still look for the bathroom in every new place I go. That probably won't change. Most of the time my normal is severe constipation. What has changed is my ability to deal with it and I'd like to share some things that have worked or not. For years I tried combinations of ducolax, lactulose, miralax, special diets, enemas, etc. Things got so bad last year I almost wound up in the er because of the constipation. I kept trying to be "normal". I've given up the notion of normal (and probably beat myself up that I had such an expectation). After the experience that almost caused me to go to the er I got real serious as one of the tools in the toolkit was fasting and this was a situation where I could not not eat my way out of it if that makes sense. I started going to a nutritionist and have been going ever since. We dialed food back to zero and slowly re introduced foods and played with the medicines w/permission from the doc, experimenting until I found a routine that i can live with. Where I am today is I take miralax 2 times a day, morning and night. About 5 times a week I take prune juice in the am with it. I take about 12-16 oz of prune juice. Once a week I take Linzess (ideally this would be 2 but work gets in the way). When I take the linzess I skip the miralax dose in the am but take the prune juice with it. Food wise I have cut out virtually all fat, chocolate and red meat. Virtually nothing fried. I eat plain toast or fruit in the morning, yogurt and a wrap or sandwich with turkey and some potato chips (my main cheat which has to go) and for dinner salad and fruit allowing me fat from the dressing and I tend to use chicken fingers to get some flavor. All food portions have been reduced a minimum of 50% and I can't tolerate large meals. I add in rice and some potatoes at lunch instead of a sandwich once or twice a week. While I know I am still working on the food part a great deal, the combination of miralax, linzess, prune juice and controlling my food intake is allowing me to get by every day without worry. The prune juice in particular has been incredibly helpful and I vary quantity and frequency as needed and it is usually enough to send me over the top and produce good results. On those times I am having extreme trouble I just have as much prune juice as I can handle. I have had up to 1/2 a bottle. If I keep things up, the combination has not failed me yet and I have not wound up in the kind of pain I was in last year. I hope this helps someone. Remember you are not alone. Sign me lucky and grateful!

User avatar
susie0915
Posts: 425
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: Some things that have worked for me

Postby susie0915 » Tue Nov 14, 2017 6:56 pm

So happy you have found what works. I also tried many things. I went to a bowel control clinic. The Dr suggested taking miralax everyday. My issue was frequency of bowel movements. He said this could help me fully evacuate. He also suggested suppositories or enemas. I chose to do daily enemas as it gave me control of when and where. It takes about 30minutes and I'm good for the day. I was worried the miralax would cause loose stools and I may still have to go more often. We all have to try different things. Some are lucky and have very manageable bowel control and frequency. I hope your success continues, I'm sure you feel so much better. I know how stressful it can be when struggling with bowel movements after cancer treatment.
58 yr old mother of 3 Dx @ 55
5/15 DX T3N0MO/ 2A
6/15 5 wks of chemo/rad
7/15 sigmoidoscopy/scar tissue left
8/15 Pet scan NED
9/15 LAR
0/24 nodes
10/15 Bowel blockage. 3 1/2 weeks in hospital,early ileo rev since
surgery to repair blockage. c-diff inf :(
12/15 6 rds of xelox
5/16 Clear CT lung scarring/inflammation
9/16 clear colonoscopy
4/17 CT 4mm lung nod onc thinks scar tissue
monitored for autoimmune disorder/interstitial lung disease
7/17 no change lung nodule
10/17 Clear CT

lcasadonte
Posts: 3
Joined: Fri Mar 03, 2017 6:26 pm

Re: Some things that have worked for me

Postby lcasadonte » Wed Nov 15, 2017 7:53 am

I go through what most go through. I don't think it will change but being able to have some control over how my body is functioning has become my goal vs "being normal", the misguided goal i had. Doctors didn't really help and why should they care they saved my life and they did that well I might add. I use the prune juice instead of an enema. I change the volume and frequency of the prune juice accordingly. I was hoping not to have to do daily or weekly enemas or taking a prep once a week was another alternative. I know everyone on this board is trying and I never saw prune juice discussed. I wanted to take as few drugs as possible, especially as this is a daily issue. No one really explains this to you up front so you can prepare. I probably should look into the bowel control clinic. Do you find this helps?

User avatar
susie0915
Posts: 425
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: Some things that have worked for me

Postby susie0915 » Wed Nov 15, 2017 2:23 pm

lcasadonte wrote:I go through what most go through. I don't think it will change but being able to have some control over how my body is functioning has become my goal vs "being normal", the misguided goal i had. Doctors didn't really help and why should they care they saved my life and they did that well I might add. I use the prune juice instead of an enema. I change the volume and frequency of the prune juice accordingly. I was hoping not to have to do daily or weekly enemas or taking a prep once a week was another alternative. I know everyone on this board is trying and I never saw prune juice discussed. I wanted to take as few drugs as possible, especially as this is a daily issue. No one really explains this to you up front so you can prepare. I probably should look into the bowel control clinic. Do you find this helps?

The bowel control clinic did help. I had to find it myself. It is located at a different hospital than the one I was treated. MD Anderson has a bowel control program that can be downloaded online.It uses prune juice in the plan. It addresses diarrhea, frequent bowel movements and I believe constipation. It is more time consuming and restrictive than the daily tap water enema and I still had problems along with some good days. The daily enemas have made my life so much easier. It only takes me 30 minutes, and I can eat what I want and I don't go again until the next morning when I do the enema again. I know constipation isn't good either, I experienced that before which I caused by taking too much lomotil and immodium. Now I don't take either. We all have to do what works for us and what we are comfortable with. I've also been able to gain weight back since I'm not afraid to eat.
I agree, the surgeon just takes care of taking the cancer out. Although my surgeon was pleased when I told him the enemas were working for me, and that I gained weight. I lost almost 40 lbs during the whole year of treatments, and have been able to gain 15 back. I am so glad I went to the bowel control clinic. If you can find one in your area it may be worth investigating. No one ever mentioned enemas, suppositories, or taking miralax everyday as an option. I chose the enemas because I had to do one for a test the clinic did and felt pretty good the whole day. It does take time to become comfortable with and institute a routine. And doing daily just makes the whole process much easier as stool doesn't build up. I did seek help from a gastro at my cancer hospital and his solution was to take citrucel or Metamucil and give it time. Although he did tell me to limit immodium.
I feel anything that helps us feel we are living a somewhat normal life is the right thing. The key is just finding what that is.
58 yr old mother of 3 Dx @ 55
5/15 DX T3N0MO/ 2A
6/15 5 wks of chemo/rad
7/15 sigmoidoscopy/scar tissue left
8/15 Pet scan NED
9/15 LAR
0/24 nodes
10/15 Bowel blockage. 3 1/2 weeks in hospital,early ileo rev since
surgery to repair blockage. c-diff inf :(
12/15 6 rds of xelox
5/16 Clear CT lung scarring/inflammation
9/16 clear colonoscopy
4/17 CT 4mm lung nod onc thinks scar tissue
monitored for autoimmune disorder/interstitial lung disease
7/17 no change lung nodule
10/17 Clear CT

Lee
Posts: 5258
Joined: Sun Apr 16, 2006 4:09 pm

Re: Some things that have worked for me

Postby Lee » Wed Nov 15, 2017 4:46 pm

Thanks for sharing, it might someone down the road.

I do know there are many people here who have found great success with daily enemas.

Again thank you for sharing.

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 10 years and counting!


Return to “Colon Talk - Colon cancer (colorectal cancer) support forum”



Who is online

Users browsing this forum: Bing [Bot], Google [Bot] and 24 guests