Posted 7/19/2013 11:54 AM (GMT -5)
Hi all,
I am new to the site but from what I have seen, the work being done here is amazing. Sharing best practice and the levels of support being shown are truly inspiring. I hope you will bless me with the same enthusiasm.
I have been struggling with UC for the last 4 years. After several confusing colonoscopies, doctors are swaying towards ulcerative colitis as opposed to crohns. Images showed left-sided distal colitis. I was having issues for about 4 months at the beginning of 2009 until I went to see a GI who initiated a tapering dose of pred along with Asacol 800mg MR tabs.
This seemed to bring my flare under control and I was ok for a while until I had a couple of major flare-ups later on that year. Upon hospital admissions, I was treated with IV hydrocortisone and then switched to oral pred after a few days. Each time it seemed to calm things down but after tapering off the pred, I was never really truly in remission. They escalated my drug therapy to include salofalk enemas as and when required, and 150mg of azathioprine.
Whenever I was symptomatic, I would use the salofalk foam enemas for a few days and seemed to respond excellently. After a few days, the blood and frequency would have stopped and stools would start to form. I then relapsed in August 2011 with a major flare. I spent 9 days in hospital where they gave me IV hydrocortisone once again and then switched me to oral pred as before. It took me a lot longer to respond to the steroids than before but essentially it settled things down.
After this episode, things were good. I tapered off the pred and only seemed to have a few hiccups here and there which were sorted with salofalk enemas. In fact, my condition was the least troublesome it had ever been. I must add that I started smoking at this point which seemed to help me tremendously. In October of 2012, I completely stopped taking all of my medication. I was fine and still felt great.
about 6 weeks ago, I started having issues again. Bloody stools (both mixed and fresh), abdominal pain, general feeling of unwell etc. I was losing so much blood, it left me feeling extremely weak - I could see blood soak pieces of stool and blood dripping in to the pan like there was an open wound). I initiated the salofalk enemas (2g at night) immediately but after 4 nights, I hadn't seen much improvement. This puzzled me as I had always responded well to them previously. I then switched to pred foam enema (which I had never used before) 20mg at night. Again, nothing for a few days, but then symptoms started to improve slightly. More solid stools, a lot less blood etc. I continued this for about 2.5 weeks when all of a sudden, I had a BM with all of my symptoms back as bad as ever. I was once again seeing huge amounts of blood and I had a lot of pain. This really really confused me. I thought pred foam enema was supposed to work really well and it would really bring all the inflammation down. I have restarted salofalk foam enemas nightly for the last 3 days - I am not sure if there are any improvements. Although the fresh dripping blood has stopped, I am still having a lot of digested blood in my stools, along with what looks like blood clot masses just exiting my rectum and sinking to the bottom of the toilet. Stools will be fairly formed one day, and not formed at all the next - there is just no consistency. There is a constant 'churning' sensation in my colon and rectum especially. When I release the enema the next morning, it is like mucus pellets at the bottom of the toilet stained with blood if that makes sense.
The questions going around in my head are:
1. Why did salofalk foam enemas not do anything 5 weeks ago when I have responded so well to them before? Furthermore, why did pred foam not work when I have read so many good things about it? (actually it started to work, and then stopped suddenly - is this normal?)
2. How long can they take to work? And if I have not seen any effect thus far, is it possible for them to ever start to work?
3. Should I continue using them or go back to the dreaded prednisolone?
4. Are the characteristics of my BM common to anyone else? I know the blood stained stools are but what about the masses of blood and mucus pellets?
5. When everyone talks about long term effects of prednisolone, how long does someone actually need to be on it for them to be susceptible to these effects?
6. Is it possible for me to go back in to remission solely through the use of enemas?
I apologise for such a lengthy post but since its my first time, I want one and all to get a good picture of exactly what is going on and my history. I am also sorry for all the questions but I have had so many sleepless nights recently thinking about all this stuff and its really stressing me out. I just want to be healthy again - I'm sick of not being able to lead a normal life.
Any thoughts,comments or suggestions would be most appreciated.
I thank you in advance!