Newly Diagnosed

[bk1579]

Hello, I'm new here and have just been diagnosed with CD or UC. Endoscopy shows UC, but blood work shows CD. My doctor said that there were certain pathogens in the blood work that are typically only present with CD. Haven't gotten the lab work back yet, but either way, he says I have one of the two. I know I don't have it as bad as some of you here, but I know I'll have lots of questions as I go. I first stared noticing blood about 6 months ago, but no diarrhea. Then there became lots of mucus or whatever that white stuff is. Finally went to the dr. and he sent me to the gastro. So, now here I am. Been reading lots online and found this forum. I know I can get some answers to some questions from people that have had this disease for a long time. Thanks for all the info and any encourgement would be greatly appreciated. Oh, the dr. does have me on 40 mg of prednisone that makes me eat like a cow and also asacol (9 pills a day).

 

[D Bergy]

Hello,

There are many interesting and helpful people here. As I was recently diagnosed also I can't really help anyone from much experience. But I can tell you that everyone seems to be welcome here and will help any way they can.

Sorry to hear you have one of these nasty conditions, but it helps to talk to others with the same problems. So, welcome to the forum.

D Bergy

 

[HostileJava]

Welcome, I haven't been here very long but it seems to be a very open almost family like community. A very welcoming and caring place.

 

[Crohniac]

Welcome. I too have found that it's like a family here. People here truly understand what we are all going through and each individual here has support, compassion, and a willingness to listen to what you have to say. It is a wonderful place and I am sooooo happy to have found it. Good luck and hope to hear more from you. Stay positive!

 

[Nancy Lee]

Hello and welcome to the Forum!

You'll meet plenty of great people here who are in the same boat
and also find a lot of reading material.

Keep us posted as to how you are doing on the Pred and Asacol!

Again.....Welcome!
Hugs~Nancy

 

[Kev]

Hey BK, welcome to the forum.. you'll get a lot from this site.. funny thing, your condition & mine sound VERY similar.. My GI isn't able to tell whether mine is CD or UC yet either.. all of the scopes, tests, bloodwork have been inconclusive so far
and my colon is too inflamed for them to attempt to route thru to the illeum.. So I am on 9 salofalk (one of the 5-ASA pills, similar to Asacol, pentasa, etc..) and 40 mg of prednisone.. Anyway, enuff bout me.. just wanted you to know you are not alone with your condition (does misery REALLY love company anyway? And if it does, would company WANT misery to love it? I mean, with a name like misery!!)

OK, enuff of that.. welcome to the forum, membership has its privileges (like, you get to read/respond to inane responses like mine.. see how fortunate you are?)

Cheers

Kev

 

[bk1579]

Thanks for the welcome Kev. What steps are they taking next to make a correct diagnosis for you? Any ideas? They've just sent some blood work to some lab in California that is supposed to be able to tell which mine is. Not really sure what makes that lab so special, but we'll see what happens. I should have the results from that back in a few days. It's been about 2 weeks already since they sent it off. I'll let you know when I find out. How long have you been on the prednisone and salofalk? I started taking asacol first for about 4 weeks and really didn't show any signs of improvment. Then my dr. put me on the prednison and have been taking that for about 2 weeks now. Not really sure of any improvement yet, but all in due time.

 

[TammySue62]

Hi
Welcome to the forum.
If you have any questions just blast away
and someone here is sure to answer.
We r still waiting on my daughters blood
tests to come back as she to might have
some kind of IBS proplem.
See is see a (MINE) GI on June 11 and
her GP may 28 hopefully then we will be
able to find out some answers. I"m just
praying that she does not have CD.
I wouldn't wish this on anyone.
Enough about me
Goodluck and keep us posted and
fire away on any questions that you have.
TAMMY:welcome:

 

[callypat]

Hi BK,

I was put on asacol 9 pills a day along with entacourt (sp?) when I was first diagnosed a few months ago and also didn't see much improvement. I've now been on humera shots and imuran for about 6 weeks, still not seeing much improvement. My stomach hurts all the time and I still have to run for the bathroom as soon as the food hits my stomach.

My blood was also sent to the lab in CA. It's special because it's the only lab in the country that has the technology to test for the pathagens that are markers for the crohn's (or so I was told). My doc says the treatment is the same as for UC, but I wanted to know for sure so he ordered the test.

Good luck with your test.

 

[bk1579]

CallyPat, Do you have CD or UC? It's been several weeks now and I went back to a followup appt. on June 1st and they still didn't have the labwork from Ca. back yet. My dr. was going to check on it and see what the holdup was. I'm now tapering off the prednisone but still taking the asacol. I'm seeing some improvement now. I only have some mild cramping on occasion, usually within a few minutes after I eat. I had some bleeding in the past, but that has since calmed down quiet a bit. Although, I think it has to do with drinking milk, I do have a lot of mucus/pus (yea, that's gross, I hate those words) sometimes. I think I'm going to try not to drink milk or eat icecream as much. I only guess thats what contributes to that? Anyone know? I do love them both though (Especially icecream) !!!

 

[callypat]

Bk

I was diagnosed with UC with a colonoscopy, but after the blood test was told the markers were there for crohn's. Not sure if you can have both or if it has to be one or the other. All the reading I do seems to lump them both in together. I got my results back from the lab in about 1 week so your doc is right to follow up on that. Maybe they are backed up or something.

I can't tolerate dairy at all right now. I'm not even having any luck with soy milk. I do miss ice cream though especially now that it's summer. If I were you I would eliminate it all together and see what happens when you add a little back in.

 

[DCH11]

Hi bk...

My fiance is on the same exact thing you are. Except now he has taken prednisone so long they have him on mp (mercaptopurine) only bcuz the prednisone is risky. They told us that long term its not good for you. He does great on the 40 mg of prednisone but once he tapers down to 20 mg he begins to bleed again. The asacol has really helped control how many times a day he goes to the bathroom...besides his flares.

If you have any questions i may be able to help you just ask!!

-Dana

 

[teeny5]

Welcome! I didn't notice any results from the Asacol for atleast a month. I also have that Prometheus blood test being done. Should get the results in a couple of weeks. Will let you all know what it says. I have had a CT scan, colonoscopy, upper GI, and several other blood tests done. I do think it is Crohn's though because I have skip lesions in my colon...they say that is a classic sign, but I guess we'll see. He said he thinks I have Crohn's but put it down as indeterminate colitis until all the test results come back.

 

[teeny5]

So I finally got the results from the Prometheus test...it said "Not consistent with IBD." Great so no help that was! My Gi seemed kinda irritated with it too...said he was hoping it would say if I had UC or CD but that it isn't a very good test. I guess only 74% of people with IBD, 71% of people with Crohn's and only 50% of people with UC show the markers they are looking for in the test. So, he said I do still have IBD but still not conclusive as to whether it is Crohn's or not. Oh well...maybe someday they will know exactly what I have.