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I have some questions....crohns/colitis overlap? Remicade fears?

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Ulcerative Colitis
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Posted 3/23/2009 7:52 PM (GMT 0)
Hi everyone

It has been a long time since I have written or asked any advice.  I have been doing ok finally due to prednisone and iron infusions.  I seem to be in a remission for the first time ever!! With this said...I am also experiencing the nasty side effects of steriod therapy.  I am gaining weight (I swear overnight) and moody and having bouts of acne.  I am off of the asacol and tried Lialda.  They both seemed to make my diarrhea worse...odd but true.

I have some questions...I was told I have crohns/colitis overlap.  My colonscopy showed I have UC but my blood work showed I have crohns...what gives????  It was explained to me but I have never heard of this from anyone else.  Am I just that lucky??  LOL  I am just curious if anyone else has this and can shed some light.

My other question is about Remicade.  I am to start it in a few weeks and hopefully get off of the prednisone.  I am scared to death!!!!  I have read the 3 page consent form and really am afraid. I have heard some good and bad stories.  My concern is that I seem to be really sensitive to drugs in general.  For example, I have to take a childrens does of benadryl or I will be sleeping all day.  I have lots of allergies to meds and foods too.  I guess my main concern is that I will die from Remicade.  Now this might be my anxiety talking but I cant help but be super nervous about a crazy med like this.  Any words of encouragement are welcome!! PLEASE!

I hope you are well and thank you for your advice.  I really appreciate it! 

Take care

Amy scool

Posted 3/23/2009 8:21 PM (GMT 0)
Hi..you have Crohn's Colitis...it's CD in the colon. You may have some CD in the small intestine...is that correct? or just in your colon...that could be the overlap the doc is talking about.
Or...he was meaning indeterminent...which means it seems in the category of both and it cannot be determined as of yet.
My doc says either, not both...others disagree, but eventually most who have confusion regarding diagnosis end up with CD diagnosis anyway...

I don't think there's a definitive blood test for CD or UC....microscopically or pattern of disease helps diagnosis, but crohn's colitis mimics UC in early stages if it follows the pattern of UC, but there are some patients who may have other things going on as well as IBD....so the testing continues.

One thing...the meds for both are pretty much the same. Not all patients react to the meds with positive outcome...it's sometimes trial and error/success.

I understand your frustration, for me a definitive diagnosis is easier to deal with no matter what it is. At least information can be garnered...at least that helps my anxiety and dealing with stuff.

Hang tough....do the research and hopefully that will help ease some of your state of mind.

quincy
Posted 3/23/2009 8:23 PM (GMT 0)

I have never heard of that.  Are you sure it's not crohns-colitis - which is crohns disease that only affects the large intestine?  As for the remicade - I've been doing great on it for years.  It got me into a full remission.  Yes - some of the side affects are scary - but I had no quality of life and staying in a perpetual flare increases the risk of colon cancer.  So I took my chances and I'm happy I did.

Good luck!

Posted 3/23/2009 8:28 PM (GMT 0)
Quincy

thanks for your help.  The bloodwork they did was an antibody test.  It is used to show which disease I am more likely to have.  THe results pointed more towards CD then UC.  THe scope showed UC, pancolitis to be exact.  My GI said it was UC since there were no granulomas and the ulcers had only gone so deep in the lining of the colon. Also my ileum looked great.  I have not had an upper GI in years but I have no issues other than reflux with my upper GI tract.  I do think I have UC only since my main probs are with my lower bowels, specifically my rectal area.  That is where all the bleeding was coming from.  It is all so confusing.  I only hope the Remicade helps me out and I can get off the Prednisone.  I am scared to start it but will think positive!

THanks again

Amy

Posted 3/23/2009 8:31 PM (GMT 0)

mamas boys

I will ask my GI when I go in a few weeks to clarify. THanks for the good news on the remicade.  I have been doing good since on Prednisone but the side effects are not fun.  Especially the weight gain but I learned to take the good with the bad.  I am in remission and fat...lol 

I will let you all know once I start infusion and let you know how I am doing.  Wish me luck!

Amy

Posted 3/23/2009 8:35 PM (GMT 0)
It sounds like your GI meant that you have CD and it is affecting your colon...I think that would make the most sense. But like quincy said, maybe its some of the small intestine and the colon?

I was on remicade when I was flaring the first time and I was 16. The side effects are definitely scary but if you have no quality of life sometimes its worth trying. Before they would administer the Remicade they gave me benedryl and tylenol (? I can't remember tylenol for sure...it was a long time ago so I could be mixing it up with something else). Normally if you show any signs of an allergic reaction they stop it and don't let you continue and they monitor your condition. I was getting blotches from the remicade but I wasn't having a problem breathing or anything serious so I continued to use it until it stopped working for me.
Posted 3/23/2009 8:38 PM (GMT 0)
If there's no problem with your ileum but the tests show CD then you probably won't know for sure what you have until you start having problems with the upper part of your GI tract.

And lol don't feel bad for being in remission and gaining weight from pred. I'm in remission and gained weight from getting too excited with food and starting college! At least you have a medical excuse!! LOL! :)
Posted 3/23/2009 8:39 PM (GMT 0)
I know exactly what you mean, scared the Remicade will kill you- honestly, every time I go for an infusion, I wonder if it'll kill me! I've been on it for about 2 years, & it hasn't always been smooth sailing. I did develop strep pneumonia aftr an infusion, & wound up very sick, in intensive car for a week, with bacteremia, pneumonia, & a bunch of other stuff. I thought I'd never use the drug again, but it helped with the UC, & I did, & so far so good. It's taking a chance, but the risk is fairly low. My only real complaint is that I've had pneumonia twice since starting it, & seem to be more prone to respiratory infections now. If you're vigilant about your health, & keep an eye on things, you should do ok. But I still get a little nerved up before an infusion- after that hospital episode, I went for blood work before the next infusion, just to make sure I was ok to get it.

Posted 3/23/2009 8:45 PM (GMT 0)
I've been on Remicade for 3 years with absolutely no problems and great results.

In regard to the whole Crohn's-UC thing, there are a very small number of people who have features of both conditions. However, the blood tests are notoriously unreliable, so much so that a lot of GI's never use them. Most feel the biopsy done at colonoscopy provides the most accurate diagnosis.
Posted 3/23/2009 8:45 PM (GMT 0)
I've been on Remi for almost four years now; no problems or side effects, and I'm living life. I understand about being sensitive to meds; I can't take any narcotic type meds...usually Tylenol does the trick. The others make me loopy or sick! I usually take half the dose of any cold meds, etc., just because I'm so sensitive. Hope this helps..good luck with the infusion, and let us know how you are doing!

Posted 3/23/2009 8:54 PM (GMT 0)

Wow thanks everyone for the quick responses....

It makes me feel so much more normal to chat with fellow sufferers.  I should chat more often.  I agree that the blood work is not the most reliable and upon initial dx my GI did say he was going to go with UC since the scope was more accurate but then this past visit he mentioned the potential of the overlap.  LOL  Who knows, all I DO know is I am going to start Remicade and see what happens.  I am a tad reluctant since I am feeling so much better, better than I have in yrs but know that I cannot be on pred forever.  I will keep you all posted once my treatments start.  My first one is Apr 8 the day after my bday!  How exciting right?  LOL

Take care of yourselves!

THanks a ton

Amy turn

Posted 3/23/2009 9:52 PM (GMT 0)
You might be in the rare 2% of patients that suffers with both CD and UC but keep in mind GI's doing scopes don't always make a perfect DX and neither does the blood work is not always accurate either, plus there's always human error on the part of whom ever did your blood work just as there can be during a colonoscopy...the only good news is meds that are used to treat UC are also used to treat crohn's colitis.

Many of the symptoms for UC are the same as for crohn's (regardless if the crohn's is affecting the colon or not) so going by symptoms alone isn't enough since they are both inflammatory bowel diseases.

:)
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