Aloha all - Hello and such from the new guy

So, I have spent much of the day reading alot of these sites and decided to join this one. So, here's my deal. I'm an Iraq and Afghanistan Veteran, and on my most recent involuntary excursion for my country I wound up having some crazy GI problems (while in country). After alot of ups and downs for the rest of the deployment, I made it home and thought that was it - obviously I am here, so I was wrong. I started having flare-ups again within a month of being home, and had my first FLex-Sig in April 07. Doc said "Ok, can't see anything, but the biopsy tests show active colitis". SO we start Asacol, 9 a day. I have a decent summer, but things aren't perfect. But they were manageable. In the fall, had a flareup that was a bit more than the norm, doc said take 12 Asacol, and we try a little prednisone. Things are ok through the holidays (again, ok meaning it's just like I had IBS and had to stay away from stress and cheese), and then comes January. Things start to happen more often. February - complete and total explosion of symptoms. about 20 episodes a day. I take 2 weeks of sick leave and the doc starts all sorts of extra treatment, more prednisone, suspensions (cort and asacol). I go through another Flex-Sig - bam, doc says "I didn't see it last year, but this time, there's no denying". So ok, we knew, but now we know, Left-Sided colitis. So he turns the fire hose on: more prednisone tapering up, and we head to Azathiaprine, 50mg. That was April. Now, I am sitting at 175mg Azathiaprine, no prednisone (tapered off) and 4 x Lialda a day (I was passing the asacol whole earlier in the year, so he went with these, and they have worked much better because I time them for digestion. Am I Ok? Still no. And frustrated as hell. I went 4 solid months with no less than 10 episodes a day (and most of them just gas and mucus, that's it).

My toxicology reports show that I am metabolizing the heavy doses of Azathiaprine, so on that note I guess I am healthy as a horse. THe doc is cautious about going up to 200mg or more because quite frankly, I am at the top of the central band scientifically - he has said that if the toxicology reports show no toxicity next time, and that I am still not seeing benefit, and I agree to it, he thinks that the science can support another increase. It was an if-and-only-if conversation.

But that was not the last conversation we had. Before I left his office, we talked Remicade, and Removal. So I left with those two things floating in my head. And they are still bouncing around. I will invariably choose Remicade if I can afford, before I even consider seriously removal - I am 31 years old and still have every intention of going in the ground whole in 70 years or so. But it is in my head. Over the last 6 months I have exhausted all my leave - annual and sick. Options sliding, as they discuss medically retiring me, or worse, keeping me with no restrictions because it's hard to articulate how bad it is.

So, the only thing to add, is that I have been messing around with diet, and it seems that I had a few "really good days" in a row after a week of limited carbs (and it was only saying, hey, I haven't really eaten any bread or sugars this past week). SO I have been looking into this SCD thing I read about on some of the posts here.

So if anyone would like to respond to anything I have said here, or toss some knowledge about the drugs, options, SCD (very interested in SCD today), or whatever else, please do.

Sean

Try this link. I hope it will take you to the thread where this was being discussed:

https://www.healingwell.com/community/default.aspx?f=38&m=773011

aloha lucky and welcome!
as for the SCD, you can just do a google search for it or try these sites
www.breakingtheviciouscycle.info/
www.scdiet.org/
http://specificcarbohydratediet.net/
www.scdrecipe.com/recipes/

it has helped a lot of people and hopefully you will have luck with it as well!! since you are interested in learning about food and how it affects your body/symptoms, i suggest you keep a food journal (list everything you ate, drank, meds etc. and also your BMs, if you were gassy, felt overall good or bad that day etc.). that was the main thing to help me learn what really works for me. we are all affected by the disease so differently.

hope that you can start feeling well very soon!

I have been dealing with this disease for a long time, since mid-1980s. Like me, you will figure out what you need to do to feel as good as you can, whether it's food or timing your meals and thinking ahead about bathroom visits or whatever. I don't even see my GI very often, she knows I know what I need and when I need it, and she calls in the Rx. Based on what she observes with other patients and because I manage well even with severe UC, she doesn't think the new treatments are worth the side effects for me. My colon may be a mass of scar tissue, but to look at me you would think I am very healthy (and I don't tell). But if you followed me around... you would know different!
I'm surprised at how quickly some folks start thinking about surgery. Not that it is wrong, I'm just surprised. On the other hand, I'm also surprised at how many people expect that, with some combination of diet or medicine, their UC will go away and they will be OK again. Has anyone ever been cured of UC, without surgery? I don't think so, if it was really UC.
Wow, that's kind of a downer, sorry! I meant to just say, it seems so mysterious now and it will be a challenge but you'll figure it out.

I have really been looking into the SCD deal (and a few others on here who's diets are limited but are not SCD). I think after the next paycheck I will budget out a two week SCD plan so that I can walk into it, and see if I can sustain it for that long and what it will cost me.