question for Quincy

[butterflytrans]

Please note in my above post that I was saying that maintenance therapy in CD is not warranted in MILD to moderate Crohn's cases The evidence shows that these can be put in to remission and kept in this state withOUT drug therapy.

Another thing...other than induction of remission in certain relatively mild cases of CD or colonic Crohn's, 5-ASA agents have no place in the treatment of Crohn's.

[quincy]

Hi twisten,

Oh, a fistula.....definitely leaning more to CD. Where was your fistula?So, now you're between the diagnosis of two doctors -- talking of being between a rock and a hard place.

Your CD is limited to the colon then? Which areas of the colon are affected (ascending, transverse, descending...etc)? If you're on Asacol it should help with the inflammation if it's not severe. There's also Pentasa or Colazal depending on where in the colon your CD is.

That was good news that your colonoscopy was ....but I hope the doc didn't abruptly have you stop your meds without tapering.

I'm sure that if you are not improving or have worsening symptoms you'll get back to the doctor. CD of the colon seems to be difficult in diagnosing.

How's the weather in AB? I'm in MB, and just had our first snowfall 2 days ago. I guess winter is here to stay..

I hope you get all this sorted out. At least the doc put you on meds!

What exactly are your flare symptoms at this time?

Keep us posted as to how you're doing.

Hope you have a feeling good day!!

btw....your post isn't anywhere near llllllloooooooonnnnng!

quincy

[quincy]

Hi butterflytrans,

Just for the record, I'm a she.

I don't have anal involvement perse with my UC....but when flaring my anus gets "touchy" and somewhat reactive. UC starts at the anal/rectum "connection"....and those who have had their colons removed but not the anus can have anusitis...a continuing of UC symptoms there. So, it's not spared really, just when it's not "alone" I guess.

My UC is rectum/sigmoid, and quite nicely treated and maintained with Asacol and Salofalk retention enemas. I was diagnosed just shy of 16 years ago, but had definite symptoms except bleeding almost three years before that.

It was suspect that I might be on the way to PSC because of increasing liver enzymes....I refused the ERCP and so far so good as to the enzyme levels. Still elevated, but not changing. Could be the meds, plus estrogen patch I'm using after my hysterectomy. It's a closed matter for now and the doc agreed with my refusal.

So far so good and both my doc and I are happy that my last c.scope in June came back with no cancer.

I just wanted to add that 5ASA is still one of the best meds of choice for CD, but it would definitely depend on the severity and how deep throughout the digestive tract wall has been affected.

I've never read nor heard that 5ASA has no place in treatment for CD. According to patients, it's successful in treatment plus maintenance. It just doesn't do well with pred (from what I've read).

Do you have CD or UC? If so, how long, which meds, symptoms....you know all the pertinent info required for sharing!! ;-)
I don't have the energy to go through all your posts to find out.

Hope you're doing well.

Best to you,
quincy

[butterflytrans]

Hey quincy! How are ya...sorry...I didn't realize you were a she.

Yeah, it is surprising to hear that 5-ASA isn't meant for use in CD in most cases. Like I said, there is an exception. #1. In colonic Crohn's, you can often use sulfsalazine or another 5-ASA agent to induce remission. You're right that many people are on maintenance therapy for CD with 5-ASA agents, but the thing is, this is a placebo effect. Numerous trials have been done on this subject in the past 10 years to show that, once in remission, the people who took the placebo pill did just as well as those who took the 5-ASA tablet. In other words, Crohn's in the mild and moderate forms is very managable without any medication whatsoever to maintain remission. In more serious cases, the two drugs that have evidence to actually work are MTX and azathioprine. Now I know that you probably have lots of friends on 5-ASA, and that's because they're probably being treated by their family doctors, many of whom were taught to do this in med school. If you are in contact with a tertiary care center, you will see that none of the gastroenterologists use 5-ASA agents in CD except in certain special cases.

No, I don't have UC or CD, which I am thankful for, but let's just say I have the opportunity to be exposed to it.

Anyway, I know this board isn't to discuss medical management of stuff--I just wanted to put out "did you know" type of statement 'cause it is evident that a lot of people use 5ASA agents in CD when they're really not that helpful in the vast majority of cases.

[twisten]

Actually I didn't know either that 5-ASA's aren't for cd maintenance. I've seen 3 GI's, 3 internal medicine specialists and numerous GP's and have never been told that. It makes sense though. When I was first diagnosed the asacol is all I was put on and it did nothing. It took close to 2 years of heavy prednisone and imuran doses to bring it into "remission". The symptoms I have now are extreme abdominal cramps above the belly button and curves down towards the right side towards the appendix (it's not my appendix causing it), burning in a couple spots, nausea and vomitting, achy joints, had diarrehea up until yesterday now nothing is moving which is what happens with me. I had the lesions previously from the left splenic flexure in a skip pattern right down to the terminal ileum. It's cold here Quincy, but I guess I shouldn't complain because its going to get a lot colder!! Things were really icy this morning because we had a freezing rain last night. We had lots of snow back in October but its pretty much gone now. I think I've answered most of the questions but if not just let me know.