Eileen - I had a malignant tumor located in the rectal area (barely inside), 1 inch in size. It was removed 10 years ago. My surgeon removed 90% of the sigmoid/reservoir area, 15 inches of colon above it and reattached me. Like you. I had a temporary colostomy for 8 weeks. It's been 10 years now and it's still a struggle. I have multiple bm's, small in size and amount, thru out my entire day, as long as I continue eating. Early on, I benefitted from a plain, low residue diet and 4 to 6 small meals a day. But then I had to return to a more normal routine (I had been taking college classes during the day while my daughters, 4th and 7th graders at the time were in school themselves). The goal was to obtain a bach. degree by the time my oldest went to college. It never happened! I couldn't get thru a full day or even half day of college classes. My early on great routine/diet habits were ruined by several semesters of classes myself. Long story short, I quit and stayed home again, recovering, trying to find that one approach to managing my situation. 10 years later I'd have to say I have this about
75% figured out. I still have very bad days, even after watching my diet, keeping my stress level low, etc. I am working part time (got a job 4 years ago, our daughters are both in college, I gave up trying to get a degree my myself). So that's an improvement. But I will never, ever be normal again (ie, one big dump a day, eating anything I want to again.....those days are over).
I manage my situation now by a combination of several things 1. diet (very important), 2. reducing stress as much as possible (saying no to certain social events if I am not comfortable attending them), 3. exercise (walking on a treadmill is what works the best for me, I can easily stop it to use the bathroom if I need to) and 4. Colace (a stool softener, I take a low, pediatric dose amount). I tried both powder and pill form fiber supplements, the thinking from my doctor was to bulk up my stool, recreate an internal new reservoir of my colon that was pulled down by stretching the walls of it each time I had to go but this never worked AT ALL! I was miserable. I can actually feel that I am very different now inside. My new doctor (original surgeon moved out of town) drew me a diagram of what my new lower colon is like compared to a drawing of what a normal colon should look like. A normal sigmoid/colon bulges out and can allow a lot of stool to back up and collect, without pressure or pain. My new lower sigmoid/colon area is very narrow, my doctor needs to use a pediatric speculum now to examine me, that is how narrow this area of my body now is. So consequently, I could see why stool just keeps coming down and I have such pressure to go. The walls of this new sigmoid area cannot stretch like the old one did and I need to go - a dozen, 15 or even 20 times a day. Small pebble like bm's sometimes, but usually they're the size of oh a walnut? Not large like they used to be. So basically I'm saying I'm a straight pipe now. If I keep eating I can feel the stool higher up slide down and then I need to go. I can hold it, but 30 min. seems to the longest and I have such pain if I hold it. You'd think it was a lot I was holding inside but after that individual bm the amount was so small. It always amazes me such a small amount of stool could make me so uncomfortable. Then of course 10 min. later sometimes, more slides down and I have to go again. What most people do not get if they see me struggling like this is why don't I just stay in the bathroom and go all at once (like I used to). In other words, just finish up. Well, it's just not that easy! Believe me, I've tried that. Sometimes I do stay in the bathroom but stand up, allowing for gravity to let more slide down and then I go again. But after oh 30 minutes of this you just want to wash up and go back out to watch TV or do chores around the house. At least now my family gives me this one bathroom in the house, I've used it so much the toilet is on it's third set of parts. And they know sometimes the urgency I experience is intense, I am running to get there sometimes.
You may experience the significant improvement your surgeon is hoping you will. I will hope that for you as well. But if not, remember you can manage all of this. I have been doing so for 10 years now. It's not been easy, oh my gosh no, but it can be done! My entire goal since accepting the fact that I go all day long, is to keep my stool as formed as possible (not messy, not D) and be able to use a public bathroom without trouble. I've gone everywhere! The grocery store, the mall, restaurants, even portalets. I know where every bathroom is on the face of the planet (it seems like!). Never thought my life would revolve around a toilet but it does. Once I accepted this fact and then decided, okay how can I make these bathroom visits more normal (releasing these small in amount bm's each time) did I manage the situation better. Once I let go of any hope of returning to having one dump a day, eating anything I wanted was I able to look at things in a more positive way. Now I'd have to say that for the most part I just accept things as they are and do what I need to so I can work part time, leave my home for social events, have fun outings with my family. You'll figure all of this out in time too.
I would highly recommend keeping a food diary/journal. Keep track of every single thing you eat and drink each day and also if you take meds. By doing this you begin to see what foods agree with YOU the most and then you can begin eating those particular foods the most. And avoid the ones that mess you up. That's how I somewhat perfected my diet. But it took about
2 years of faithfully keeping the journal to get to this point.
Wishing you well.
- Diagnosed with rectal cancer, April 1999 - Stage I, no treatment necessary
(5 hour colon resection: 90% sigmoid removed, 15 inches of colon removed, gall bladder removed, given temporary colostomy)
- Colostomy reversal, June 1999
- Left with IBS/D symptoms, multiple bm's every day
- On a low residue diet at least 75% of the time
- Takes Colace 50 mg each evening
All in all I do okay, I just use the bathroom A LOT! But I survived and beat cancer!
Post Edited (Marsky) : 6/9/2009 7:21:40 AM (GMT-6)