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Ulcerative Colitis
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Posted 8/4/2013 3:26 AM (GMT 0)
And there is just SO much information!

I've probably had it since around 2009, but the flares (if that's what they were) were only once a year or so, lasted a couple of months, were reasonably manageable, and then spontaneously resolved. I was too embarrassed/scared to get it checked out until the current flare started seriously messing with my life and scaring the poo out of me (literally!) An accident at work (thankfully I got myself cleaned up and pants/underwear changed with no one noticing) was the catalyst. That, and when you stop eating in order to avoid the unpleasant results of peristalsis - yeah, it's time! I am 45, female, btw.

So I had the sigmoidoscopy this past Monday and the diagnosis is confirmed. Now am on the prednisone taper course (started at 40 mg) along with Lialda 3x daily. Feeling much better already except that it's drink/pee/drink/pee/drink/pee constantly! But at least I can control my poo and sleep through the night.

Of course there is so much I don't know; I'm supposed to go back to the MD in about 10 days unless I need to go sooner. Hoping for an easy transition into remission and then no more flares for a while, but yeah, I'd be lying a bit if I said I wasn't worried.
Posted 8/4/2013 3:58 AM (GMT 0)
Welcome, Mara2112, I'm glad you found this forum. I'm sorry you've had this diagnosis, but I'm glad you're getting treated.

Now that the prednisone is helping you, this is the time to start thinking about how you are going to manage this illness going forward. It is usually a good idea to begin taking your maintenance medication (yes, there will be a maintenance medication) while you are on prednisone. Most GIs start with the safe stuff, mesalamine, and this will help you get off prednisone more quickly, assuming you tolerate it well.

Most of us with inflammation in the rectum need to use a rectal medicine - mesalamine enemas are the best since they cover the rectum and sigmoid colon, the usual places where people with UC have inflammation. The oral mesalamines don't really treat this part of the colon very well at all. So when you go to your DR in 10 days or whenever, make sure you talk about mesalamine enemas, and start using them as soon as possible.
Posted 8/4/2013 2:56 PM (GMT 0)
Mara,

Welcome to the forum.

Kaz is right - now is the time to think about long term plan.

Rectal meds are good.

And then there are other things you can do too: diet modification, adding slippery elm powder, l-glutamine, what about probiotics - are you on any?

What about vitamin d3, what are your levels at?

Here's what put me in remission, and if it interests you, there are things IMO that you can control, which will have a direct impact on your disease, the symptoms you experience and their severity.

I was able to control my UC into remission through various supplements, probiotics, diet modification, and LDN , low dose naltrexone.

For more info on the protocol which has put me into remission, please go to this link: https://www.healingwell.com/community/default.aspx?f=38&m=1666318 , and look at the 11th post.

I hope you feel better and let us know how we can help you.

 

Posted 8/5/2013 1:19 AM (GMT 0)
Vitamin D3? See, these are the kinds of things I am SO ignorant about. I suppose it's OK, as I do take a Flintstones w/iron (only reason I am not anemic, probably) daily. But I didn't know there was a correlation.

It's more than a little daunting to discover that this disease varies so much in terms of different folks responding to different treatments. The list of possibilities seems endless.

I'll be honest - I hate the idea of extensive diet modification and would prefer to avoid going that route if at all possible. I'm super active and enjoy a variety of athletic pursuits, and one of the benefits (IMO) has always been that I can eat like a field hand if I want. I'm reading all of these recommendations about eating several small meals daily and THAT'S a big change from what I do now. I can do it - did it when I was bodybuilding years ago - but I prefer small (or no) breakfast, a MASSIVE lunch, and maybe a protein bar or something later if I'm hungry just before or after evening activities.

So far the meds are working somewhat. Things are a bit firmer and I can now sleep through the night; also the tenesmus is mostly gone. But there's still noticeable blood and some cramping, although I am much better than I was this time last week. (Just realized it's been 2 days since I took an Immodium or a Bentyl, and I seem ok without them, though I still don't like to be too far from the bathroom).

I read the Uceris thread last night and that's something I definitely plan to ask about, as I'm not keen on doing repeated/long courses of prednisone should it ever come to that.

Sorry for the rambling - I'm really glad this board is here!
Posted 8/5/2013 1:26 AM (GMT 0)
Mara,

Rambling is ok

Vitamin D3 levels should be IMO at the very least in the 50's, mine are in the high 60's

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