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 yrs old Dx @ 55
5/15 DX T3N0MO
6/15 5 wks chemo/rad
7/15 sigmoidoscopy/only scar tissue left
8/15 Pet scan NED
10/15 Bowel blockage. surgery,early ileo rev, 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
7/17 no change lung nod
10/17 Clear pel/abd CT
1/18 CT/Lung no change in 4mm nodule
5/18 CEA<.5, clear CT pel/abd/lung nod no change
11/18 CEA .6