Urgency and lack of control is THE issue isn't it? That's what changes our lives, the rest of it is just side issues that the doctor cares about
(bleeding, inflammation, etc) but doesn't really affect our daily routine of how we live our life.
At my worst urgency for me was:
Not being able to have a telephone conversation without sitting on the toilet.
Not getting in the car without having an almost immediate stop planned out. I would sometimes get in the car, drive around the block and come back to use the toilet because the car always stimulated the urge to go.
Walking across a parking lot to get inside a store was too far and too much time.
Making excuses for not leaving the house
Not going out to dinner
Not doing anything before noon.
Getting up 3 hours before I had to leave the house
Not getting enough sleep because of getting up several times a night to use the toilet
Choosing clothes not for how I looked in them but how fast I could use the toilet (elastic not buttons).
Wearing a diaper (hard to type that)
It has taken 6 months and diet modification to get me to the point of talking on the phone and not even thinking about
needing the toilet, I can get in a car without horrendous worry (but the past lives on in my brain). Urgency is the hardest and last symptom to heal for me. I know how to "shut it down" but am determined to not use Immodium or anything else in my quest to be totally healed. In the past 2 months I haven't used Bentyl, Immodium or anything similar. I feel 90% there with respect to urgency and 100% healed on all other symptoms.
What I finally understood was that the invisible inflammation was causing the bleeding and other symptoms including urgency and I needed to heal that before anything could improve. Duh, right? I took all the RX given to me but nothing ever got better until my last try at the SCDiet.
I KNOW what urgency is. When I read people writing about
having a minute I think "I would have LOVED having a minute." because I had NO warning. That is urgency. Amazing I still have my colon but I am hard-headed.
In remission April 2010 after 10 years of suffering and no remission ever
Jan 2010 started SCD diet (modified to remove dairy, fruit & juices)
Bleeding stopped in 3 days, 95% remission in 5.5 months
Diet: Gluten/grain-free, fructose-free (blueberries OK), dairy free (swiss cheese OK), starch-free
I eat: Protein(meat/fish/eggs,no soy), nuts(soaked/roasted), non-starch veggies, nut-flour muffins
Daily: fish oil, Vit D3 2000 2Xday with oil/fat, veggie juice, sunflower seeds, probiotic VSL#3
homemade yogurt and some fruit OK at 5.5 month remission
Highly recommend: the book "Life without Bread" and the Specific Carbohydrate Diet