Any answers would be great

[crystal5520002000]

any answers would be great

I had just posted that I got my biopsy results and the nurse really didn't tell me anything, and then I got a letter in the mail stating that I have collagenous colitis. So naturally I start to google that to find some answers. Everything that I have read is so vague. I have been on loperamide, entocort, reglan, bentyl, pepto, some gas medicine, and other things. I have had no relief from the D in four years, Im low on several different vitamin levels, and I am just so worn out I am at the point of thinking about quitting work because by the time I make it home I am drained and I can't even spend what little time I have left of the night with my kids. I feel like I am picking to work over my family now. It is so frustrating and I am at a point that I really don't know what to do. I have always been one of those people that always had everything figured out, now I am just lost, tired, moody, and getting out of control. If any of you know more information than the normal stuff that post on to google about how this may or may not work would be greatly appreciated

 

[PeninsulaLil]

I don't know what google had to say, but here's what the Crohn's Colitis Foundation of American says http://fl.ccfa.org/site/TR?type=fr_personal&fr_id=1751&px=2062893&post_id=8920&bpg=rlist&pg=personal and also a discussion board http://www.perskyfarms.com/phpBB2/index.php

I was originally diagnosed with microscopic colitis also and treated with asacol for flares (which were relatively mild I now know) for almost 9 years. When asacol wasn't cutting it anymore, went to a new GI and after sigmoidoscopy, colonoscopy, blood tests and biopsies, got the Crohn's diagnosis. Because of where in my colon the Crohn's is and isn't, new GI said he could see how it was originally seen as microscopic colitis. Since the treatment is basically the same he didn't think any damage had been done.

Good luck!

Lilly

 

[Journey]

Crystal, sorry to hear that.
It's weird they told you in a letter
and not in person.
Is this in the U.S.?

If quitting your job does not
hurt you financially, then it is
something to consider. Some people
get stressed when they don't work
and have a lot of time on their hands
but many people find fun things to do.

You could also work part time and this will
reduce your stress levels.

 

[crystal5520002000]

yes this is the US right in good old kansas city, mo. I thought that was strange myself that they would tell me in a letter but not in person but I feel like they have more to say but haven't yet one more week til my appointment with the G.I. Hope I get more answers and hopefully a treatment program that will start to help alleviate some of these symptoms

 

[uab grad student]

Hi Crystal,

I think that is odd and unprofessional of them to notify you via letter instead of by phone call or in the doc office itself. I don't have any experience with collagenous colitis personally but I have heard that it can coincide with Celiac disease so if you haven't been tested you might want to look into it. I hope you start feeling better soon!

 

[crystal5520002000]

As soon as I left from getting my colonoscopy done they sent me to do the full celiac bllod panel however I have yet to hear the results from that, apparently it is a specialized test so only certain labs do it. They told me a week and it has been about 2 so maybe no news is good news.