Ok, I used to read these forums looking for help and emailed with a couple people from time to time, but I didn't want to write my story because I wanted to wait a year with no pills and no flare ups. Here is what I did.
You can choose to believe me or not. I just know I was searching for anything and after 4 years of taking 12 colozal a day and 75 mg of purinthenal (spelling), and needing prednisone every 10 months or so I have put NOTHING medicine wise in my body since january of 2008. I had UC very bad starting I think in 2003 and I had never even heard of it upon my first flare up. I could not get to work without risking a bad accident, was up all night running for the can and had no idea what was wrong with me, scared to eat and lost weight. I went to a big time gastro in NYC and just looking at me and telling him my symtoms before he did his sigmoidoscopy he said he knew I had UC. Yada Yada, couldn't make a normal looking #2, they were pebbly and sandy and awful, could never stop a flare up once I felt constipated and sensed it coming on with flecks of blood and sand in in toilet. From supositories to some foam thing, no dice stopping it. Just prednisone helped and maybe that kept me clear until the next flare up and the colozal and other pills didn't do much. I have no way of knowing. My Dr. said it didn't matter what I ate as no studies showed food mattered, but if I noticed something bothered me I might as well stop. I asked about beer, meat, coffee etc and he said same thing. No proof of anything being a reason.
To try and not make this too long I still get frustrated thinking of pills forever and how frustrated I was. In my research I found a couple articles relating to bad bacteria building up on the colon walls and I started thinking perhaps people with colitis didn't get enough good bacteria or got too much bad bacteria or something and I came to a conclusion from my own testing of what was wrong with me and 12 MONTHS NO Pills, No flare ups, No accidents, and my Dr. finally saying to me he didn't subscribe to anything that was not medical, but if it works for me there are some new theories. So here is what I did and I am not selling anything, maybe I won't put in any names of anything because than it will seem like I am and take away credibility and all I want to do is help someone stuck in the misery I was.
I believe those of us with UC have a weakened lining in our lower colons. Other people can eat what they want and the amount of good bacteria in their colons beat up in a sense the bad bacteria that form from bad food and drink in our bodies. I noticed that I was constipated for about a week and than bam, a flare up. Here is what you do the next time you are feeling ok, not during a flare up.
1. Do NOT eat big breads and white pasta and steak for a bit. No dessert of any kind with sugar or sugar substitue. Stop with the bagels and the pancackes and muffins in the morning. Do NOT stop yourself up. That's what I did thinking I was slowing my system down, but really you just lock up your pooping abilities and those bad bacteria start to build and not pass through your system.
2. Get Juicing a bit- go to a juice store and a juice every morning, fresh with like celery and carrot and beat, parsely. Just vegetable No fruits, No sugars. Stay away from all sugar for a bit. I love pastry and I know this sucks, but you are about to feel better.
3. Eat thinks simple to digest like a half a turkey sandwich on bread with a soup for lunch instead of a huge puffy submarine sandwich and cookie. No soda. No beer.
4. Drink black tea, NO COFFEE,when you have a little food in your system. Don't keep the bag in their more than a couple minutes and not on an empty stomach. Tea on an empty stomach makes me feel naseaus for some reason.
5. Eat smaller meals and no junk food. You want stay away from too much pasta or bread or steak. How about none for 2 weeks. Eat like cooked chicked and things without BREAD or Pasta or much rice. It's tough but UC sucks so suck it up.
After a few days you start feeling a bit better. I started reducing my pill intake to about half on a hunch. Not from doctor advice so only do what you think. Obv. I only know what worked for me.
6. I bough this powder online, I almost don't want to say which one becasue you'll think I'm pimping it, but whatever, it was the dr natura stuff. I just like the colonix powder and the paranil pills. The tea made my stomach hurt.
7. Back to the no sugar, no big bread/bagel sandwiches/no sugar, do not Clog your pooping ability.
8. After a little bit you will start feeling better as you are not putting any bad bacteria in you and your good bacteria is getting tough enough to take on the bad. Make your body healthy with what you put in it and soon enough it fights back.
Picture those cavity commercials when we were young, I'm 35, where those green monsters attacked the teeth. That's how I picture the UC battle. Our colons don't have the power to fight off the bad green monsters as much as others so when you filled yourself over the years with USA white bread, pasta, coffee and sugar there was so much build up eventually they took over. To get back to normal, try what I said, help out your good intestinal bacteria and do not let yourself get constipated when you feel healthy.
about a month after I changed my diet (and not radically mind you just no cake at night, no heaping pasta or rice, low beef, small meal at night & no bread in the morning, no coffee, no soda, add in tea, real fresh made veg. juice and normal size portions of sandwiches and smaller meals).... I sat on the good old toilet when I felt a movement and soemthing strange happened & I looked at what I saw. I had a 100% normal poop. It had been years since that happened and I have had the same thing for 12 months and I have no prescribed pills in me. I now eat some bad stuff, but in small portions, I love pasta and cakes but I do not eat huge portions as I was accustomed to and I space it out. Like half as big. For example, I don't eat pasta as a meal by itself with bread. I eat like a side portion and 1 piece of bread with chicken or whatever. It's easy really.
Ok, this got long and I was taken away a few times when writing, but I hope it helps someone. I promise everything I said was true. I knew there was something I was putting in me that was the problem even though my Dr. said otherwise. I'm not saying that everyone has the same exact issue, but I bet more of you than you think do. Pills Pills Pills I hope I never see you again. Let me know if you try this common sense plan and if it helps. I feel 100% normal again and this is all I did after years of bleeding and accidents.