Hi - first of all I just want to say THANKS to everyone who has contributed to, shared and been a part of this forum. When you're struggling with something like this it's great to know you're not alone. Which is why I feel compelled to share my recent experience - and success. This forum has been unbelieveably helpful and my apologies if this goes too long. But (so far) it has a very happy ending!
I first starting having issues in the latter part of 2009 (blood after wiping and in my BMs). My doc sent me in for a colonoscopy in early January 2010 and the diagnosis was proctitis. Canasa was prescribed and I was given a little "diet" sheet for any flare-ups (breads, cereals, pasta, applesauce, Sprite, etc...) and was sent on my merry way.
After the colonoscopy I really didn't have any issues. My BMs were fine. Still blood occasionally, however. To the extent that I did start to have more of an issue, I'd pop a Canasa in and that was that. I ate and drank pretty much whatever I wanted and continued on with life as if nothing had changed and got to carry on that way for almost a year.
Around October I could tell things were changing and then - a little before Thanksgiving of last year - things really took a turn for the worse (although I think antibiotics contributed, too). I began have BMs almost on the hour. They were (sorry if too graphic) bloody and basically diarrhea, although I'm not sure I could call it that. I couldn't sleep through the night. In fact, I was getting up every hour to use the toilet. The pain in my lower abdomen was excrutiating and I couldn't eat anything except Saltines.
Because of the holidays, I couldn't get in to see my doc as soon as I would have liked so, one Friday the first week of December, I went down to the emergency room (the pain was that bad) with the records I had from the colonoscopy and checked myself in.
The ER doc ran tests, checked me out and precribed 60 mg of Prednisone on the spot with a follow up prescription that decreased the dosage. It worked and I was thrilled! No suggestions, however, about diet.
I didn't actually finish the prescription because my BMs went back to normal (very subjective term, btw) in two or three days- and I wanted something on hand just in case.
Just in case, arrived about 45 days later around the latter part of January. Everything I'd experienced before was coming back in full force and then some. I took the Canasa and the Prednisone I had left (10 mg for two days then 20 mg the last as things escalated) before calling my doc for more Prednisone.
In the meantime, I started surfing the Internet because I knew something else was going on with my system and came across this forum. AN ABSOLUTE GODSEND!!! It also caused me to question if my original diagnosis of proctitis hadn't become something else like UC.
Anyway, I immediately became concerned with the downsides of Prednisone that many of you have discussed. I could already tell that my experience this time was different than before. Not only was the Prednisone not working as effectively (actually, it wasn't working AT ALL) but I didn't feel good or right. I decided that I would not take it for more than one week.
Additionally, I began to read about the role of DIET and decided to go gluten free immediately. I also decided to cut out sugar, dairy and red meat - eat more plain (goat) yogurt, steamed spinach and fish and to order some supplements: Turmeriforce and VSL #3 The Living Shield.
This Monday, I got the Turmeriforce first, took one cap - and HATED it. I haven't taken one since. My BMs were still like diarrhea and frequent - especially in the morning and the evening after eating. I also was having that issue of not being able to get to the bathroom fast enough after I felt a BM coming on and had a couple of accidents.
On Tuesday, my self-imposed week was up and I took my last 10 mg Predisone (even though I still have half the prescription) in the morning. Nothing had changed with my BMs.
On Wednesday the situation was the same: gassy, liquid, frequent BMs especially in the am and pm. That afternoon though, my VSL #3 arrived. I decided to take one about every six hours (four a day). They made me feel bloated and I had my doubts but stuck with it. In the meantime, I stayed gluten free and basically ate salmon, steamed spinach, avacado and polenta. I also put cayenne pepper on almost everything I ate (read that as a recommendation somewhere on the web) and ditched soy milk in favor of almond milk. At night I needed a Canasa.
On Thursday, my BMs were still more liquid than solid - but different, better and less frequent. I stuck with my new diet and took another Canasa in the evening.
On Friday morning I had one of the best BMs I've had in a long while. I went three times in the morning and while there was some blood, it wasn't anywhere near what it had been. I did not take a Canasa that night. In fact, I felt good enough to eat about a tablespoon and a half of Haggen Daaz vanilla ice cream (gluten free!) as I dished some for my kids.
This morning - Saturday morning - I used the bathroom twice. Great, solid BMs - and no blood.
All this could be coincidental - and it's a very short period of time. Perhaps the Prednisone finally kicked in or did its job after I went off it and starting taking the VSL #3.
That's not my (no pun intended) gut instinct which is:
1. Stay off gluten. If I weren't such a carb addict I'd love to back off grains altogether. I think there's a real case to be made the USDA food pyramid is actually making us unhealthy.
2. Keep changing/modifying my diet - and eat smaller, more frequent meals. When I over-eat I really feel it. Right now I'm looking at going on The Perfect Health Diet which is a variation of the Paleo Diet, I believe. I'm kicking myself for having been so 'devil may care' about diet over the years.
3. Reduce stress. I know - sometimes easier said than done. Especially if flaring.
4. The VSL #3 works. Turmeriforce might, too - I know many of you are fans. In all fairness, I took Turmeriforce while I was taking Prednisone (which wasn't going over well anyway...) and that might have caused the bad reaction I had to it. I didn't take the VSL #3 until after I stopped taking Prednisone.
A couple other things... I've tripled my intake of water (not tap), drink more green and white tea - but can't give up my coffee (but may) - although I make it half coffee, half heated almond milk with just a little honey. And no - I don't work for VSL or whoever makes it. A week ago I'd never even heard of the stuff - but wish I had.
Anyway, I wanted to share that. Having read some of your posts am know I am VERY BLESSED right now and don't take my improvement for granted the way I've taken my previous good health for granted. As things continue or change I'll stay in touch.
Thanks again to everyone for being there and God bless!
43 y/o male
dx w/ proctitis Jan. 2010
VSL #3 -- four times a day for now/Canasa as needed/Gluten-free diet/Fan of cayenne pepper
Keeping his fingers crossed...